My son has diabetes

Same Old Fears Different Day

2011-11-15T08:41:00.000-05:00

Most days I can forget how dangerous Type 1 diabetes is. I can forget the havoc it wreaks on the body and on the mind. I can forget that it kills. I guess it’s a defense mechanism. If it was at the forefront of my mind all the time I would go insane. I have to convince myself that if we just check sugars and dose with insulin all will be well.

But, then something like night before last happens and it all comes crashing down. All the fears I keep tucked safely in the back of my mind come tumbling out of my head and fill up my heart.

It started out like every other night with a quick check of the sugar before he went to bed. All seemed well. Every check thereafter was higher than the next. He would get a dose of insulin and 1-2 hours later his sugar was the same or higher. And, let me stop right here and say: I know I should have dosed him with a syringe. I know, I know. I have no excuse. But, I am human and sleep-deprived. My plan was to get him through the night and change his needle first thing in the morning.

Fast forward a couple of hours. His sugar was 466. I could not tell you how long it’s been since I’ve seen a sugar that high. I knew I had to do something. As tired as I was I knew I had to change his needle. He awoke and said he needed to use the restroom. Of course with a sugar that high I expected nothing less. But then he said his stomach hurt and he felt like he was going to be sick. He heaved but nothing ever came up. And I knew with guilt only a mother can feel that he had ketones.

I had him gulp water to try to flush them out. I changed his needle. When I removed the old one the cannula was completely bent and flat. He had not been receiving any insulin. He hung off the bed feeling horrible. Usually when I have to change his needle in the middle of the night he puts up a lot of resistance. Not this time. He just felt too bad.

An hour later I was up and checking his sugar again. It was coming down nicely, thank God. I leaned over and kissed his cheek and smelled that familiar smell that parents of kids with Type 1 know anywhere, the sickly sweet smell of ketones. I haven’t smelled it in years and years, but you never forget that smell.

And, then there was more guilt. I should have changed his needle sooner. I should have given him a dose of insulin with a syringe. I should have not been worried about sleep. I should have….

Then the “what ifs” started. What if I’d not checked his sugar all night? What if it was too late when I finally changed his needle and he went into DKA? He could have ended up in the hospital. He could have died. What had those sustained highs done to his eyes, his heart, his kidneys?

November is National Diabetes Month. I haven’t been as vocal about it is as I should have been. To say I’ve had a lot going on is an understatement. Still, I have to remember what’s most important and that’s the health and well-being of my child.

I’m not being dramatic, he could have died. If I hadn’t of caught it early enough and done something about it, he could have slipped into a coma and died.

So, my friends, I’m asking for your help. Please donate today in honor of my little man. Dr. Faustman is doing awesome research that I believe will one day lead to a cure for Riley and all the others who deal with the needle sticks, the restrictions, the fears every single day.

If you would like to help go here and donate. Every little bit helps. Also, Saturday is my birthday. Want to get me something? Well, I’ll take a cure for Riley please. Your donation can help make that possible.

One day he will sleep through the night without worry. He will run and not have to check his sugar. He will see a cupcake and just eat it without figuring carbs and debating whether it’s a good idea for him to even eat it. Would you like to be a part of making that happen?

Happy 6th

2011-10-06T09:00:00.002-04:00

Six years ago today my world, the world of my 3 year old son, and my family’s world was turned upside down by six little words: “Your son has Type 1 diabetes.” We were all suddenly thrust into a world of carbs and insulin. My little man was thrust into a world of endless needle sticks and food restrictions. My husband and I were thrust into night upon night of interrupted sleep.

Looking back on that day I had no idea what was really in store for us. I knew it was going to be hard, but I couldn’t fully comprehend just how achingly hard it would be. All I knew was how hard it was to stick my child with a needle or how hard it was to tell him he couldn’t eat or drink something. I know now, that was the easy part.

I now know the hard part is the fear. The fear of waking up one morning and finding him dead in bed. The fear that I’m really not strong enough to handle it; that I have no clue what I’m doing and that instead of helping him I’m really harming him. The fear that one day he will rebel against this disease and just stop managing it at all. The fear of blindness, limb amputation, kidney failure. The fear that there will never be a cure.

For six years I’ve been carrying around these fears. The pain from this fear isn’t as stabbing as it once was. It’s softened around the edges, but it’s still there. And, I suppose it always will be. I’ve learned to live with it, not to let it rule my thoughts like it once did. Yes, it’s brought to the forefront from time to time, like when I hear of another child whose life was cut short by this terrible disease. But, for the most part it sits quietly in the back of my brain.

Every year we “celebrate” Riley’s anniversary. We go out to the restaurant of his choice and for an activity. This year it is Sappari and bowling. People often don’t understand how we can celebrate such a thing. I once felt that way too. But, we are not celebrating that he got diabetes. We are celebrating that it hasn’t beaten him. We are celebrating that he is free from complications, that he’s never been hospitalized, and, basically, that he’s living and breathing. Not just living and breathing but having a wonderful time doing it.

I celebrate the fact that he can still participate in any activity he wants. He is so happy. He loves life. He loves his video games and his big brother. I celebrate the fact that while this disease has left scars on his body, it has not left scars on his heart or his soul. And, if anything, this disease has made him a better person, a more compassionate person.

And, I celebrate all that it has taught me. I believe there is a lesson in anything if you just look for it. I’ve learned that you can chose to be happy or you can chose to be miserable, right where you are. The situation you are in may not be optimal. It may not be what you always dreamed of. But, it’s where you are. Make the best of it. I’ve learned not to take anything or anyone in your life for granted. Tomorrow they may not be there. Don’t take anything for granted that you have right now, not your health, not your family, not your relationships. Six years ago I thought I could never ever be happy again. I’ve learned not to look towards the future for my happiness, but to look right where I am right now.

Right now is really all that I have. And, right now I have a little boy with the most beautiful brown eyes I’ve ever seen. He’s happy and, by God, he’s healthy. He’s got an insulin pump tethered to his side and a huge smile on his face. And, right now, that makes me happy.

“To get up each morning with the resolve to be happy... is to set our own conditions to the events of each day. To do this is to condition circumstances instead of being conditioned by them.” Ralph Waldo Trine

Reading A Cure for Emma

2011-08-10T16:43:00.001-04:00

Today I began reading the book A Cure for Emma by Julie Colvin. For those who may not know the book “chronicles a mother’s quest to heal her child from a nearly invisible disease: type 1 diabetes”.

I purchased the book online the first day it came out. I had been following Julie’s progress on writing her book at her web page and I’m also friends with her on Facebook. I was eager to purchase the book for two reasons. One, because I was curious to see what she had to say, was curious to hear her story, her journey. We parents of kids with diabetes all have a story as to how we got here. We all have our lives before and after the disease entered our lives. I have always been interested in hearing other parent’s stories about how diabetes came to take up residence in their lives. I’ve read hundreds of stories written by other parents. And, there has not been one single story, not one, where I couldn’t feel the pain, the exact pain they felt when they learned that their child had type 1 diabetes. Whenever I read these stories it always amazes me that no matter how different we all are, no matter what our life experiences have been, we are all still, in our rawest form, the same. It’s weird and, at the same time, comforting to know that.

The second reason I bought the book was because part of the proceeds is going to support my most favorite cause in the world: finding a cure for type 1 diabetes. Not only is it going to support finding a cure, but it is going to what I believe to be the most promising research: Dr. Faustman’s research being done at Massachusetts General Hospital.

The book arrived in the mail several days ago. But, I finally got up the courage to start reading it today. Courage; why would I need courage to read a book? I read constantly. I really have no idea how many books I’ve read just this summer, but it’s a lot. I’m always excited about starting a new book. I was also excited to read Julie’s book. But, I was also scared.

You see, over the last 5 years I have honed the skill of pushing emotions down. I’ve learned to deal with the task at hand and not feel the moment. It sounds sad, really, when I say it. But, it’s true. It’s called survival. Because if I really took time to process all that type 1 diabetes throws at my child every day, I would be in the insane asylum or dead. Either way, I would be of no use to my child, who now needs me more than ever.

I knew that by reading this book I wouldn’t be able to keep those emotions at bay. And, I was afraid that once those emotions where brought to the surface again, they would overwhelm me.

I sent a little post to Julie that I would start reading the book Monday. Well, Monday came and went, as did Tuesday, and I didn’t start. I have no excuse. I just had surgery 5 days ago and have been lying around doing much of nothing. But, finally, today, I started the book.

I literally took a deep breath, opened the cover, and began to read. And, I’ve done better than I thought. I was on page 10 (“Then I scan her chest for signs of breathing, as mothers do the world over. I’ve always done this, even pre-diabetes. But, now I’m prepared at a moment’s notice for a crisis.”) before I had to blink back the tears.

I’ve made it to chapter 7 with no real break downs. I’ve stifled sobs a few times, but no actual tears have escaped yet. I’m not exaggerating when I say that most of the pages have been out of focus, blurred due to the tears in my eyes. Even the stories that seemingly don’t have anything to do with diabetes, like when she spent time with her long-lost friend who was dying of cancer, make me suppress the tears. Because I know that “seemingly” it doesn’t have to do with diabetes, but that in reality it does. In reality, once it’s in your life, everything, past, present, and future has to do with diabetes.

I know that a break down is coming. Eventually, the flood gates will open and I’ll weep for my child. My guess is it will happen tonight after Riley’s in bed. You see, I made a promise to myself that Riley would never see me cry about his diabetes. And, I’ve kept that promise for almost 6 years now. I don’t intend to go back on that promise now, or ever.

I’m going back to reading now. I just thought I’d give you guys a heads up. I’ve said countless times that this blog is my therapy. I will probably need lots of therapy after reading this book. So, there may be a blog explosion for a while. Or maybe not, maybe I’ll be OK. Actually, I know I’ll be OK. I don’t have a choice really. The question is: how much grieving will I have to do before I get back to a good place again?

A Rant and a Letter to the Lady at the Gate

2011-07-11T12:46:00.000-04:00

Seems I only come here to rant about diabetes now. Not like that's not what I was doing almost 6 years ago when I started this blog. Back then my posts where more melancholy. I also had a few hopeful and uplifting posts. But, now, I think I just come here to complain.

My blog is my therapy. And, at this point in my diabetes journey, I need a place to vent and whine.

I feel bad about it because there is so much more I could be posting. Like: Holden's wedding pictures. Yes, that's right; Holden has been married for 2 months now. He's still in college and about to start his junior year.

Or, I could talk about the new house we bought in January. Or, the awesome grades that Riley got this year.

But, no, I'm here to vent. Complain. Scream into the wind.

Riley is very active in sports. He plays baseball, spring and fall soccer, and basketball. Right now he is playing baseball. He made the all star team and the tournament is this week. The park where he is playing has a very strict policy regarding outside food and drink. And, I understand that. It is a local park that is trying to make money so that the kids have somewhere to play. I don't mind supporting that at all (even though a bottle of water is $2).

But, they only sell sodas, water, and regular PowerAde. To say that it has been hot in NC, is and understatement. It's been in the 90s here and when you add in the humidity it feels like its 100+. So, I had been taking PowerAde Zeros for Riley. He had been putting them in his bat bag and walking through the gate and no one was the wiser. But, yesterday, in his excitement to join his team he took off with his bat bag before I could put his drink in it.

I was going to get him to come back and put the drink in the bag. But, my mom said she would just take it in. She said she would explain why he had to have it. She was sure there wouldn't be a problem. Me, I wasn't so sure. That's why I had been sneaking drinks in all week. I've had to fight that battle too often. I'm a conflict-avoider by nature. I was just trying to let my child have his drink without having to fight for it.

When my mom got to the gate the woman told her she was not allowed to bring in the drink. My mom calmly explained to her that Riley has diabetes and they did not sell any sugar-free sports drinks. The woman then said that she had diabetes too and drank regular PowerAde. Uh, lady, wrong thing to say. I very calmly told her that she is free to do what she wants but that my son would not be drinking a regular PowerAde.
Her saying this flipped a switch in Michael and he started to flip out a little bit. He started off by asking is she was Type 1 or Type 2. When she practically screamed back that she was Type 2 he went into a mini lesson on the difference between Type 1 and Type 2 diabetes. Instead of listening and trying to understand what he was saying, she said, “Well, he can just drink water.” OK, lady, mistake number two.

Her first mistake was pulling out her diabetes card. If you’re going to pull it out at least use it to let us know you get where we’re coming form. Don’t use it to judge us and put the way that you deal with your diabetes onto our son. Everyone’s diabetes is different, especially when dealing with two different types. I know a lot of people with Type 1 diabetes and they all have to do things differently. I know some kids who do drink regular sports drinks when they play games because they need the carbs to keep their sugars from going low while they are playing. That is not the case for Riley.

Her second mistake was making a call on what our child should be drinking. Yes, he could just drink water. On occasion he’s had to do just that because I have forgotten to bring him a drink. But, should he have to drink water instead of an electrolyte-replacing drink because of someone else’s ignorance? My answer to that would be a big fat NO.

Michael snatched the drink from me and proceeded to walk in with it anyway. I took it from him and told him not to make a big deal about it that I would just take it back to the car. Of course, my intention was to get Riley to go to the car, put the drink in his bag and walk back through the gate. That drink was going in one way or another. Besides, the woman was one of those people who can only see things from her perspective. There was no talking to her. She was too busy arguing and trying to be right to actually listen to what we were saying. So, trying to avoid drama I took the drink back to the car.

While I was taking the drink back to the car Michael said he turned his back to the woman and told her she just needed to stop talking to him. He said she kept talking and called him pathetic twice and then went on the say it was amazing what people would do to get out of paying $4 for a drink. It’s a good thing I didn’t hear her say that, because that’s when I would have lost it. Ignorance is one thing, but attacking someone else is a whole other ballgame.

That is when Michael turned to the woman sitting next to her and asked to speak to who was in charge. She immediately took him to a man. To the other woman’s credit, she was also trying to get the lady at the gate to understand that Riley needed that drink. When Michael found the guy in charge, my mom was already talking to him and explaining the situation.

By the time I got back into the park, the matter had been resolved and Michael was allowed to go back to the car and get the drink.

Michael did cause somewhat of a scene at the front gate. I noticed some other parents standing there with there mouths gaping open. You see, we’re normally pretty quiet. We don’t like to make waves and pretty much keep our mouths shut. But, after almost 6 years of dealing with people’s ignorance of Riley’s disease, Michael snapped. I’ve snapped on people before. But, yesterday I just didn’t have the energy. I was tired of fighting but, thankfully, Michael took up the slack for me.

While I was sitting waiting for the game to start I was thinking of some of things I wanted to tell the woman. Not ugly things, but things to try and make her understand where we were coming from.

So, I decided to write a letter. She will never see this letter, but my hope is that one day someone will read it and understand a little better what it’s like to live with Type 1 diabetes.

Dear lady at the front gate,

I wanted to explain to you why it was so important to us that we get to bring in a sugar-free sports drink for our child. I’m guessing that since you were working at the tournament that you have a least one child. Maybe as a mother you can understand. You see, my son was diagnosed with Type 1 diabetes when he was only 3 years old. He has no memory of life before having to be jabbed with needles on a daily basis. He has no idea what it’s like to just eat whatever he wants. He doesn’t even know what it’s like to play a game without sticking himself with a needle at least once, but often, several times. I don’t tell you this to gain your sympathy. Neither he, nor I, wants your sympathy. We want you to understand what it’s like. Really understand the battle he fights every single day just to stay healthy. Not to sound dramatic, but it is a battle. Everyday we fight a battle for his health. Just today I had to fight a battle with him over French fries. He loves French fries, but we fight battles with him over French fries because it runs his sugars sky-high. We fight this battle to try to avoid complications like kidney failure and blindness. He hears on an almost daily basis why he can’t have certain things that other kids take for granted. This battle is emotionally draining on all of us and some days are worse than others. I guess we are a little battle-weary. So forgive us if we don’t want to have to fight with someone just so he can have a sugar-free sport drink.

And, you were correct when you said that he could just drink water. But, why should he have to? In the heat and humidity an electrolyte replacing drink is better for him. And, frankly, that’s not your call to make. He deserves to have a sports drink like everyone else. If your park sold sugar-free sports drinks we would gladly buy one. But, they don’t. Again, not looking for sympathy, but my son will always be a little different from the other kids. No other kid on his team sticks their finger through the dugout fence to have their sugar checked. No other kid chews glucose tablets while running out to play a base while their mother silently prays that he doesn’t pass out from a low sugar. No other child on his team is hooked to a life-sustaining machine 24/7. You don’t know how happy he was when we found PowerAde Zero. He was finally able to have a sports drink instead of water. To you, it may seem insignificant. But to a little boy who is used to always being different it is like heaven.

My hope is that you will have a little more compassion for others in the future. Everyone has their own battle that they are fighting. And, a lot of us are just plain tired of fighting and would like a little understanding for a change.

Sincerely,
Riley’s mom

Gotta' Look For the Blessings

2011-05-13T12:46:00.000-04:00

Today my little man is 9 years old. Yes, 9. Can you believe it? For those who have been following along with this blog since the beginning, he was 3 when I started writing it.

It’s strange how certain events bring diabetes to the forefront. As I’ve said before, most days diabetes is way in the background. There are the “agghhhh!!!” moments from time to time; like night before last when I had to change his needle at 3:30 AM and he begged me not to as he stood there with sleep in his eyes. But, as usual, he took it all in stride. He let me change his needle and then lay down to sleep with his hips slightly askew as not to lay on the now tender spot where I had just jabbed him with a needle. While all that was not fun, it was just one of the many things that come up every day when you live with Type 1 diabetes.

But, today, the day that I celebrate bringing my child into this world, things seem a little harder, a little rawer somehow.

Don’t get me wrong, I’m not feeling like doom and gloom today. It’s a happy day. Riley is elated. He is having a birthday party with his friends after school and a few of them are sleeping over tonight. He is really excited about the sleepover.

Tomorrow we will be having a family birthday party. That is when he will find out that we will be flying to Disney World next week for his birthday. I’m so excited about that and know that he is going to be thrilled about it.

I think what it comes down to is that you can never just be with this disease. Every birthday, every Christmas, every great family vacation, diabetes is there. It has to be factored into everything. And, while most days it’s second nature to do so, some days, like today, it’s just exhausting. I know the other parents of kids with Type 1 understand what I’m saying; like I said, not trying to be doom and gloom, just venting a little.

On the way to work every morning I have prayer time. I turn off my radio and just pray. Today I did my usual prayer for safely for my family. I prayed for those who have recently lost loved ones as well as those who are sick or having surgery today. And, I prayed a special prayer thanking God for letting Riley make it to 9. Morbid? Maybe. But, I know I am blessed that he didn’t die at diagnosis. I am blessed every single morning when I tiptoe into his room and see his little chest rising. And, most of all I am blessed that God chose me to be his mom.

Why I Love My Alarm Clock

2011-03-22T09:36:00.000-04:00

(**Note: This post was written a while ago and I never got around to publishing it.)

I’m not what one may call tech savvy. I do pick up on how to use new technology pretty quickly, but I’m not really into all of the latest gadgets. For example, I don’t have Internet on my phone nor do I own an ipod or mp3 player. I have recently begun to text, only because it is Holden’s chosen form of communication with me.

I wouldn’t say I’m old school. More like “not as young school”.

The thing is as much as I’m not into technological advances; I get giddy when I read about the advances in insulin pumps and CGM (Continuous Glucose Monitors). When Riley was diagnosed 5 years ago CGMs were talked about but didn’t really exist. Now, I “know” several people who use them or their child does. When CGMs first came out they seemed archaic, at best. But, recently it seems they are becoming more and more reliable.

Still, I’m apprehensive to begin using one with Riley. It’s not really the cost, although that does have to be taken into consideration. Because if I really thought that it would make a huge difference in Riley’s diabetes control, I’d get a second job to pay for it if I had to do that. With his A1C in range I’m not sure it’s really worth it right now. It took me a LONG time to become accustomed to having him hooked to a machine 24/7. It was years before I didn’t cringe at the sight of his pump tubing snaking out of the waistband of his pants. I’m not sure I am ready to hook him up to another machine. I don’t think Riley would like two pieces of hardware hanging off of him.

Also, I’ve heard the needle changes are brutal. I’m not ready to subject Riley to that if we don’t have to. My hope is that over the years they will become even more accurate and eventually be integrated into one piece of hardware (by Animas, I love them). And, they will downsize the needle a bit.

I’m not opposed to trying one out. I’m just not ready to jump on the bandwagon and buy one. To be honest, the main reason I would like to have one is for nighttime. I wish there was a way that he could only wear it at night, but I know that it takes a while to calibrate and all that, so that’s not an option right now. I have to be honest, since the story of the 13 year old girl who never woke up in the morning, the victim of dead in bed syndrome, I’ve let Riley run a little higher at night. It’s not a conscious decision, really. I’m just more wary about giving insulin if he’s high. I’ve cut back on the amount he gets which, of course, makes him run a little higher.

My husband and I get up more to check on him too. And, we’ve been sleep deprived for 5 years now. Every minute of sleep is precious to us. But, I can’t seem to go as long between checks now. It doesn’t help that a few nights ago at around 1:30 AM Riley’s sugar was 65. He drank a juice and got a basal decrease. 20 minutes later, he was 63. After another juice he was fine for the rest of the night. But, I can’t help but wonder what would have happened if we had not gotten up to check when we did. What would have happened if the alarm clock didn’t wake us and we hadn’t done the check 20 minutes later? Would his liver have helped out and kicked in some glucose? Or would his sugar have continued to plummet? Would he have become a victim of DIBS?

Speaking of technology, I am completely dependant upon my alarm clock. It doesn’t just help me get to work on time; it helps me insure my child’s safety. Most people probably buy cheap little alarm clocks. They will get the job done just fine I guess. Not me, I buy top of the line alarm clocks, the ones with all the bells and whistles. You see, when you are constantly resetting your alarm for every couple of hours every night to the week, alarm clocks don’t last as long. I found out it’s best to spend a little money on them. They will last longer.

I always have to make sure that the alarm is loud enough to wake us. You see, when the alarm goes off every couple of hours your sleep deprived brain will learn to ignore it. Right now the alarm clock is on my side of the bed. In a while, we’ll switch it to Michael’s side of the bed. Eventually, I begin to hit snooze and ignore the alarm, sometimes for more than an hour. That’s when I know it’s time for it to go to Michael’s side of the bed. And, when he starts to ignore it, we switch it again.

We recently bought a new alarm clock. This time I bought one with some sort of internal battery that keeps time even when the power is out. Before, we had an alarm clock that used a 9 volt battery so that when the power goes off it will continue to work. Well, turns out, our power went out and the 9 volt was dead and so the alarm didn’t work. The alarm has to work. ALWAYS. So, I shelled out a little more for an internal battery thingy. It helps me sleep a little better on stormy nights.

This is one of those “little things” I’ve talked about before. I’ve said it’s the needle sticks and the food restrictions that get people's attention. But, the fact of the matter is, that for those of us that live it, it’s the “little things” that weigh us down. The not-so-normal things that take the toll on our minds and the minds of our children. The “little things” that make him different. The “little things” that make me different. I mean, it’s not normal to love your alarm clock. But, I do. And, as much as I love the alarm clock, I absolutely positively love, love, love Riley’s little blue pump. I cannot imagine life without it.

As much as I don’t really get into technology, I am still very thankful for it. Who would think that an alarm clock is so important? But, it is to me.

JDRF Vs. Faustman

2011-02-24T20:13:00.000-05:00

About three weeks ago I came across a post by DOC founder Allison Blass. I was very interested to read it for a couple of reasons. One, it talked about losing faith in a cure for Type 1 diabetes. And, two, it was written by Allison. I don’t really know Allison, but I kind of do in a round about sort of weird internet way. Allison’s blog is one of the first blogs I started reading when our world came crashing down about 5 and ½ years ago. She also interviewed me one time for a magazine article that she wrote. And, we even got a Christmas card from her once. So, I was interested to see what she had to say on the subject. I think she did a great job writing the post. She was able to state why she felt how she did without begrudging others for feeling differently.

Prior to reading her post, I had read a little chatter on the internet about JDRF saying they were not as focused on a cure, or something to that affect; or more like they were focusing on a cure still, but also focusing on better treatments of Type 1 diabetes. I never gave it a second thought, really. It wasn’t news to me. It didn’t anger me. It didn’t shock me.

You see, when Riley was diagnosed in October of 2005, the minute we got home from the hospital I began to scour the internet for any information I could find. Inevitably I searched about a cure. Of course, JDRF was one of the first web pages to pop up. After all, JDRF is an acronym for Juvenile Diabetes Research Foundation. I read about them. I read their mission statement. I did my research on them.

I also found some articles written about research being done at Massachusetts General Hospital by Dr. Denise Faustman. I read about her research. I read about what she had done with mice. It all made sense to me. Something just clicked inside of me and said, “This woman is dedicated to finding a cure”. And, I was hooked. She hadn't even begun human clinical trials yet. The phase I of her trials began in January of 2008. She is now raising money to fund Phase II of the project.

The next year, one day after Riley’s one year anniversary, I held the 1st annual Walk of Hope. Every cent raised went to Dr. Faustman’s research. I’ve held several other walks since then. All of the money went to Dr. Faustman’s research. Every walk, every fundraiser, every penny saved in Riley’s “hope jar” (featured in my blog profile pic), goes to her research. And, it always will, until the research ends.

Have I supported JDRF? I guess I have a little. I have donated to others who have walked to raise money for JDRF. Some people I know and some I don’t. Riley had a T-shirt sent to him several years ago by a little boy who he will probably never meet. I “met” his dad through his blog and donated to his walk. In turn, he sent a T-shirt to Riley. JDRF is prominently displayed on the shirt. Riley wears it with pride.

I don’t have anything against JDRF. But, and it’s just my personal opinion, they are not really focused on a cure. There, I said it. I know that infuriates some people, but that’s how I feel and I have felt that way for over 5 years now. I do believe they are very committed to finding better ways to manage diabetes. When Riley was diagnosed, continuous glucose monitors were talked about, but not on the market. I remember that even back then JDRF was throwing around an idea about a closed loop system, AKA: an artificial pancreas.

I feel the same way about it now as I did then. It’s quite simple really. That’s not a cure. I want a cure. Period. I want my little man to live his life without depending on a drug to live. And, I’m not being dramatic here. Without insulin, Riley would die. I want him to know what it’s like to eat a snack without having to jab himself with a needle first. I want him to know what it’s like to not be attached to a machine 24/7. I want him to play sports without worrying if he will go low. I want him to have a functioning pancreas again. To me, anything short of that is just a band aid. Band-aids come off. They have to be reapplied. They cover up wounds. I don’t want him to be “wounded” anymore.

I know that JDRF also funds research projects searching for a cure. (As a side note, they haven’t given one cent to Dr. Faustman.) But they put the majority of their money into projects such as the artificial pancreas. And, that right there is why I have never had a fundraiser for them. I want ALL of my money to go towards a cure.

Don’t get me wrong, I am grateful for organizations like JDRF that are trying to find better ways to manage diabetes. Like I said, when Riley was diagnosed you couldn’t even get a continuous glucose monitor. Now, many people have them. And, in the years since they came onto the market I’ve been told their accuracy has improved quite a bit. Not only that, I now bolus Riley with his pump from across the room via his blood sugar machine. It is quite wonderful.

And, all of this technology is great because it helps improve the lives of those touched by this disease. It helps control sugars, which in turn decreases complications and increases my little boy’s now shorter than average lifespan.

But, in the end, he’s still attached to his pump 24/7. He still could go into DKA from the flu. He could go into a coma from a low. And, my biggest fear, he could go to sleep tonight and not wake up in the morning. All because of Type 1 diabetes.

As parents we all want the very best for our children. We want to see them succeed. We want to see them live their dreams. Some think that better technology is the answer.

Me? I know Riley can live his dreams with or without Type 1 diabetes. But, I would rather see him do it without an insulin pump tethered to his side, without the worry, the emotions, the complications that come along with this disease.

So, I will continue to hope. I will continue to pray. And, I will continue to use that improved technology until the day that Riley does not need it anymore. And, I firmly believe, with all my heart, that Dr. Faustman’s research will lead us there.

**(I have recently began a letter writing campaign to raise money for Dr. Faustman’s research. If you would like do donate, please click here. All donations are tax deductible.)

Home is Where the Diabetes Supplies Are

2011-02-03T12:24:00.002-05:00

We just moved into a new house. We have been renters our whole married lives and finally made the leap into being homeowners. I love it. It's so nice to be able to paint whatever color I want and hang as many pictures as I want. There is also something special about just knowing that it's ours.

But, in the midst of all the bliss of finally having our own home, diabetes keeps poking out its ugly little head.

First, it was during the packing phase. I had so much stuff that I'm not sure why I ever had in the first place, let alone know why I kept any of it. Riley's diabetes supplies were in the living room closet. They were kept together for the most part, but over the years some things had gotten separated from the pack. I found too many meters to count. I threw out some and kept some. I had to debate on which ones to scrap. Finally I just got rid of the older ones. After all, we all know that meters are a dime a dozen. Companies are happy to give you free meters. Where they really make their money is with the strips anyway.

In that same closet I came across Riley’s bag. It is a little black nylon lunch bag. We used to keep all of his supplies in it, insulin, syringes, juice, alcohol swabs, ketone strips, glucagon. We took it wherever we went. That bag has been places. I’m not much of a purse kind of girl, but a few years into his diagnosis I broke down and started carrying one with me. It’s very practical for carrying all the needed diabetes equipment. When I finally gave in and started carrying a purse, we retired that bag. After I pulled it out of the closet I turned to throw it in the trash bag next to me. I held it there and let it hover of the bag for a second before I turned and tossed into a storage bin that would be put in the attic. I just couldn’t bare to throw it away.

When I cleaned out the kitchen cabinets, up in the far corner in the darkest recesses of one cabinet I found some more diabetes loot. I then remembered that when Riley was first diagnosed we kept his supplies in a kitchen cabinet. That was back in the injection days. Once he started on the pump there wasn't enough room there for all the supplies and most were moved to the closet. I found a few strays lancets, some insulin syringes, and several alcohol wipes.

I reached in and felt around one last time before moving on. I pulled out 3 small slips of paper. I turned them over to see what they were and stared at them for the longest time. They were prescriptions given to us when Riley was discharged from the hospital. The date in the corner was 10/7/05. Suddenly, I was taken back to that day. I stared at the neatly printed words. They were written by a woman just out of medical school who was very unsure of herself. It took her forever to write the prescriptions. And, when I took them to the pharmacy they were written for over the counter things like alcohol pads, lancets, and ketone strips. They were returned to me and for the life of me I’m not sure why I kept them.

But, there they were, in my hand, a harsh reminder of the day he was diagnosed. All of a sudden I was bombarded with images from the hospital. I slept in the bed with Riley at the hospital. I remember the first morning I woke up and saw Michael sleeping in the chair. Riley was still sound asleep beside me. I woke up, looked at him, saw the IV sticking out of his little hand, and promptly burst into tears. All I could think was “It wasn’t a dream. This is a reality. My little boy will have to deal with this disease forever. It’s never going away.”

I got up out of the bed and tried to get myself together. I tried to stop the tears before anyone saw me. At that moment, the doctor who wrote his prescriptions walked in. She began to blab on about something and when she finally looked at me she saw the tears. She looked at me and said, “Are you crying? Don’t cry, everything is going to be OK.” She looked terrified because she didn’t really know how to handle a crying mother. At the sound of her voice Riley had stirred from his sleep. He sat up in bed. I quickly turned my back toward him and faced the wall. My back was to the doctor also. I forced the tears to stop. I had made a promise to myself that Riley would never see me cry about his diabetes. And, since that day, I’ve cried a river, no an ocean, of tears. But, I haven’t broken that promise I made to myself. I remember as I was turned around she kept droning on and on about something. And, all I could think was that I wanted her to shut up and leave.

All these memories came from just a few pieces of paper, memories that had been tucked in the recesses of my mind. Ones I hoped some day I would forget, but I know now I never will.

We are finally moved into our new house now. I had packed all of Riley’s diabetes necessities up in a box. Instead of unpacking them right away I let them sit in our closet for a little while. Eventually, I got tired of digging through them to find what I needed. I began to search for the best place to put them. I finally settled on a shelf in a hall closet. There they sit: sites, strips, IV prep, cartridges, Glucagon, old meters, a few syringes. They take up a whole shelf.

Once I got them placed in the closet I took the box they were packed in and threw it down the hall. Michael came in and asked what was going on. I told him I was angry. I was angry that I had to find a place for all these things. I was angry that Riley needed these things to live, angry that he always will. Angry that every house he ever moves into will have to have a special place for all the things it takes to keep him alive.

This is the just another example of how diabetes taints every aspect of life. It even makes its mark on a new house. It makes marks on Riley’s fingers, permanent scars on his skin. And, it has made permanent marks on my heart.

A Harsh Reminder

2010-10-23T13:58:00.004-04:00

This week I was harshly reminded of how terrible Type 1 diabetes is. I was reminded by a little girl named Eilish. Eilish passed away in the middle of the night because of a disease that she and my son shared.

Most days I'm able to push diabetes to the back of my mind. I count carbs. I help with boluses. I adjust basals. I monitor sugars at half time of soccer games. I ponder what to do about that 2 AM sugar that is a little on the high side. But, somehow, I keep the "bad things" at bay. All the "what ifs".

The first thing I do when I wake up every morning is tiptoe into Riley's room and listen for his breathing or watch for his chest to rise. I've been doing it for 5 years now. It's become somewhat of a habit. I think I had convinced myself that he'll be OK. He's been OK for 5 years now.

But, the story of this little girl, this girl with so much life left to live, has brought all of the "what ifs" flooding back in. I haven't slept well in 5 years. I get up at least a couple of times a night to check Riley's sugars. But, now, my sleep is tempered with something else. My brain seems to be on alert all the time. I can't quite rest. I've had several fitful nightmares where Riley was in a coffin.

It's horrible. I hate this disease. I hate it with a passion. I hate that it can rear it's ugly head and anytime steal away what little bit of peace I had made with it. I hate what it makes Riley have to do on a daily basis. I hate the little black dots it leaves on his fingertips. I hate how it alters his moods. I hate what it did to Eilish, what her parents must be going through. And, I hate that I cannot be sure that it will not happen to Riley.

Yes, it's a harsh reminder that no matter how much you convince yourself that everything will be fine, it's just smoke and mirrors. It's just a way to get yourself through each day. A way to cope with a disease that you are helpless to make go away.

My heart is broken right now. I haven't felt this way about diabetes in a while. I had stupidly convinced myself that everything will be fine. And, this story reminds me that it may not. This story reminds me how fragile life is and how we really don't have the control that we think we do.

The only thing I can do is hope and pray for a cure . All of my fundraising efforts go toward Dr. Faustman's research.

I will do what I can. I will pray for this family. I will pray for a cure. And, I will hope and pray that Type 1 diabetes spares my son from the same fate.

A Five Year Battle

2010-10-06T14:04:00.001-04:00

Five years ago today my son was diagnosed with Type 1 diabetes. I don’t have the energy, either physical or emotional to write an actual blog post about it.

Right now I am exhausted. I was up late doing a site change and then up every two hours all night checking sugars. So, yeah, I’m tired. Not just because of last night, but because of the last five years. I’m just tired of it all.

But, I felt like I had to come here and acknowledge this day in some way. I know this blog post isn’t the most uplifting, and I’m sorry about that. I can barely keep my eyes open, let alone put together a coherent post summing up the last 5 years of life.

All I can say is that we’re still here. We’re still fighting. Five years later we’re still determined to fight a battle that seems will never end. Actually, Riley is fighting the battle, I’m just the one on the sidelines trying to make the strategic maneuvers that will hopefully keep him safe for one more day. Today I feel like waving the white flag, but I know I can’t. A little boy who means everything in the world to me looks to me to lead him in this battle that he didn’t chose. The enemy just snuck up on him and we’ve been on the defensive ever since.

He’s been fighting this battle for 1,825 days now. There have been no cease fires called, not for birthdays, holidays, or even the middle of the night.

He needs a cure. It’s as simple as that. He needs a cure.

Another Quicky Update

2010-06-17T11:11:00.002-04:00

It seems I always promise a real post, yet always do little bullets. One day, I'll write a real, heart-felt post about diabetes. But, not today.

*** I'll start with diabetes things: ummmmmmm, not much to report. His last A1C was 7.3. I'm happy with that. But, if things continue like they've been lately it should be even lower next time. But, we all know that he could start running high 24/7 and that "great" A1C will be out the window. For the most part diabetes has been behaving itself as much as it can. Riley was playing soccer and baseball at the same time and was on a temp basal quite a bit because of it, but his sugars did well. Right now he's just playing baseball.

*** Speaking of baseball... It was supposed to end this week. But, he made Allstars. While I'm proud of him for making it, I'm not happy that he has practice every. single. day (other than Wednesdays and Sundays). I was looking forward to relaxing on my one month off (July), but it appears that will not be happening. He is playing in a tournament next weekend. Then the Allstar tournament is July 5-11. If they do well it may last longer than that. Still, Riley is excited about it. He didn't think he was going to make it and was a little upset. The smile on his face when they called out his name was priceless.

*** My last day of work for the summer is June 30th and it can't come quick enough. I'm off today and loving it. Even though I'll be busy the whole month of July I'm looking forward to not having to go into work every day.

*** We are planning a trip to New York City in July. We were planning on leaving on July 12th, but because of Allstars I'm looking at going the last week in July instead. I am very excited. None of us have ever been to New York. It's going to be a bit expensive, but it will be worth it. I figured since Holden is getting married next year, this will be our last chance to have a real family vacation with just the four of us. Holden has always wanted to visit New York, so that's what we are doing. If any of you have any tips or suggestions let me know. We are driving up and planning to spend 3 or 4 nights in Manhattan. I plan to use the subway for transportation once we get there. I have a lot of planning to do between now and then. I want to kind of know what we're going to do every day, so we're not just wandering all over the city. Again, any advice on what to do while we're there and where to eat would be greatly appreciated.

*** In addition to going to New York we will be going to Myrtle Beach in July also. We are going on a church mission trip. We've gone several years, but were unable to go last year because my mom was so sick. We've always spent 3 nights before and this year we will be spending 5. I'm looking forward to it. We do that as a family too. And, my future daughter-in-law is going too. We have fun helping others and have some down time in the pool too. And, one day we visit a water park. So, it's also kind of a little vacation.

*** Not enough things to do in July? How about we throw in swimming lessons for Riley? That's right, the one week we don't have vacation, a mission trip, or baseball, Riley will be taking swimming lessons. I wasn't going to sign him up because it was being done the week we were going to New York. Since that has changed I figured I'd sign him up. I'm not doing it because I'm a glutton for punishment and want to spend my entire time off shuttling him from here to there. I'm doing it because we live around water and he loves getting in it. It's important to me that he knows how to swim. Holden took swimming lessons pretty much every year for several years when he was younger. He's not a great swimmer, but he knows enough to keep from drowning. Riley took lessons last year, but still has a lot to learn.

*** My mom is STILL sick. June 20th will be exactly a year since her first visit to the ER. And, to be honest, we're not really any closer to knowing what's wrong with her than we were then. We have been around and around in circles. She's seen every doctor that has been suggested to her and some who haven't. And, they always send her on to someone else, because they can't figure out what going on with her. She has an appointment with a GI doctor next week as well as a urologist. Even after all this time, I always hope that we'll walk in and they'll say: "I know what's wrong with you." But, it hasn't happened yet. I have to believe that it will one day soon. At least she's not bad all the time. She never has a great day. But, she has good days and bad days. I never know how she's going to be from one day to the next.

*** Michael is off for the summer. He is still doing pool work on the side. Currently he and Riley are in Holden's room playing video games together.

*** Holden is home for the summer. He is working a few days a week. He also goes back to his apartment and spends a night here and there. It's nice having him home again. We watched The Book of Eli together last night. He has already seen it, but wanted me to see it with him. It was a good movie. I really liked it, but can see why it wouldn't be for everybody.

I guess that's it. Isn't it enough? Really, when I get time between games, vacations, and swimming lessons I will write a real post. I missed out on diabetes blog week. I plan on doing the posts at a later date. There are some good suggestion given on what to talk about. I'm overdue for a sappy, emotional diabetes post anyway.

Eight Is Great!

2010-05-13T13:58:00.003-04:00

My sweet baby boy turns 8 today. I cannot believe how the years have flown.

Happy birthday, little man. You inspire me with your courage and positive attitude each and every day.

I am so blessed to get to be your mom.

Quicky Updates

2010-04-09T12:48:00.005-04:00

I don't mean to stay away for so long. I really don't. So, for now, here are some quick updates on life.

** Had my surgery (hysterectomy, kept one ovary) on March 29th. Everything went well. I spent one night in the hospital. I begged the doc to let me go home the night after surgery, but he wouldn't let me. He said there was too much of a risk of bleeding. But, he did take away my pain pump and catheter so I could move around more. So, I came home first thing the next morning and have done well. Probably have done too much on some days. My belly lets me know when I've done too much because it swells. As far as the pain goes, it has not been anywhere near the pain I was in before surgery. Only having to take Ibuprofen for the pain. Have my post-op appointment on Monday and plan to return to work on Tuesday. ( In addition, the two stray kittens (Savannah and Samantha) we got in December had their hysterectomy this week. We've all been lounging around together. Actually, we haven't. They started jumping up on the couch and chasing each other the night after surgery. They took it a little better than I did.)

** My mom is still not doing well. We still do not have any answers as to what is going on with her. She has good and bad days. She has been sick for 10 months now. I've lost count of how many doctors she has seen or how many times she's been in the hospital. So, if you don't mind when you say your prayers include a quick one for my mom.

** Holden is doing well. In a few short weeks his first year of college will be done. I can't believe it. It has flown by. You know, I thought I would die when he left for college, but I didn't. It was rough for a while, but it was also nice to see him out on his own and to know that I didn't do such a bad job raising him after all. He still comes home pretty much every weekend. He will be home tonight. He is going to work first and then he'll come home. He texts me almost every day. I am so proud of the young man he has become.

** Michael and I are still saving up a down payment for a house. It's not easy. We have both been on spring break this week and he's worked most of it putting up and working on pools. I hate that he has to do it. But, it's good money. And, I want a house that we can call our own. Also, since my last post we celebrated our 10 year wedding anniversary. We didn't do anything special. We went out to eat at a local restaurant that night and the following Saturday we went and looked at houses and went out to eat again. (Also, Michael had a birthday yesterday. Happy birthday Michael Alexander. I love you!!!)

** Riley is playing soccer and baseball. Soccer practice started a few weeks before baseball did. Baseball games start a couple of weeks before soccer ends. It makes for busy weeks. He had baseball practice on Monday and soccer practice last night. His first soccer game is Saturday at 11:30 and he has baseball practice that morning at 9:00. It seems like a lot, but he loves it and doesn't want to give up either one. I am glad he is able to play both.

___________________________________________________________________

Now, let's talk diabetes. That's what this blog is supposed to be about anyway.

** A few days after my last post Riley's pump starting unpriming itself. It had done it before but not enough to warrant a new pump (according to Animas). This time they said to send it back. We got another Animas 2020 while we waited for the PING. It didn't take long before the paperwork was straight and he had his new pump. And, it didn't cost us as much out of pocket as I thought it would. To sum things up we love, love, love it. The remote is fabulous!! He can be up to 10 feet away from me and I can bolus him. He got it in Duke blue. (BTW way to go Duke 2010 National Champs !!!)

** Don't really have much else to say about diabetes. I guess that's a good thing and a reason I don't post as much as I used to. What else is there to say? Diabetes sucks, enough said. He has highs and he has lows and he has some sugars in between. He deals with it really well and I'm very proud of him. He is taking on more and more of his care. I hardly ever check his sugar anymore, only when he asks me too. He does all of his bolusing at school, but I handle it when he's at home. He's able to read labels for carbs now. He understands so much about what affects his sugars and what doesn't. I still hope and long for a cure. All my donations continue to go to Dr. Faustman's research. I pray every day for a cure, but have learned to live life as though there will never be one (if that makes sense).

Well, I guess that's it for now. Thank you to anyone who is still reading.

What's Happening

2010-03-08T13:24:00.002-05:00

I don’t post on a regular basis anymore. My blog reading has slowed down considerably too. Still, I think about you guys often and even if I don’t type out an actual post, I’ve written many a blog post in my head.

Just wanted to update anyone who might be interested on what’s been going on lately.

● First, the biggest news; Holden got engaged last weekend. He and his new fiancé, Brittaney, have been dating for almost 4 years now. They have set a date for April 23, 2011. That will be the 5 year anniversary of when they first started going out. He’s young and she’s young, 19 and 18. I’m not thrilled about it and would rather he wait until he’s out of college. Still, it’s his choice. He assures me he is still going to pursue becoming a physical therapist. She will be starting college in the fall at the same place Holden is. They both assure me they are going to stay in school. It’s doable, but it will be hard. I am a firm believer that anyone can do whatever they want as long as they are committed to their goal and will work hard for it. Still, he’s my baby and I’m not ready for it. Guess I have another year to get ready anyway.

● My surgery (hysterectomy) is scheduled for March 29th. The closer it gets the more anxious I get. I’m just ready to get it over with so I can stop thinking about the “what-ifs”. I hope to be having a DaVinci robotic surgery. (I have my pre-op on the 19th so will get more details then.) Mainly I’m worried about how speedy the recovery will be. Really don’t have a whole lot of time off of work. The doctor told me I’d be out 2 weeks, but I’ve requested 3 weeks off to be safe. I’m going to try to go back at the 2 week mark if at all possible. That way if Riley gets sick or has a field trip I want to go on I can take a day off for that. Just don’t want to use up all my sick time if I can help it.

Like I said, I’m anxious. I’m starting to work on getting my house in order. I want everything clean and straight prior to my surgery. My problem is I know what I want to do, but haven’t gotten motivated to do it yet. I’m a very last minute person which only adds to my stress level. I’m trying to push myself to get things done now rather than later. My surgery is the Monday before Easter so I know I need to get my Easter shopping for the kids done pretty soon.

I’ve weighed the pros and cons of surgery and the pros far outweigh the cons. The one thing I keep reminding myself when I have doubts about going through the surgery is that I’ve been hurting going on 20 years now. Also, I hurt about 2 weeks out of every month. When you add that up it means I’m in pain about 6 months out of the year. I just thought of that yesterday. It’s staggering, really, to think I’ve given that much of my life up with this. Just ready to get it over with and get on with my life.

● Riley’s been having a lot of lows lately. I’ve been kind of holding off on doing anything with his basals. Usually this sort of thing works itself out. It doesn’t seem to be doing that so I’ll be sitting down tonight and trying to figure out what to do about the lows and his basals. He had a 48 last night (the lowest he’s had in a good while). Usually, he just says he feels low, drinks a juice, and goes on about his business. But, the 48 threw him for a loop. He was shaky and looked scared to death. The low came right at bedtime and thanks to good ol’ rebounds and my overzealous attempt to stop the low, the rest of his nighttime sugars were over 300. He was 188 at breakfast this morning, so was finally starting to come down. His teacher called at lunch and he was 72. That’s how most of his lows have been: low enough to have him drink juice, but not low enough to really make him feel bad.

● I totally missed Riley’s pump anniversary. I’ve remembered it every year but his one. On March 3rd he had been on the pump for 4 long years. That means his pump warranty has expired. At first we were told that once it expired he could get a new pump. Then, I was told that insurance would not pay for another one until his current pump malfunctions. He has an Animas 2020 now. Once this one croaks he will be getting a Ping. Animas told me that once his pump does malfunction they will still send a replacement pump until all the paperwork is done for a new one. That made me feel better because I thought he might have to be without a pump for a while. So, we sit and wait for his pump to do something crazy. He’s had 9-10 pumps over the past 4 years. The last one he got was in September. This one will probably last for years. While I’m not looking forward to the out of pocket expense for a new pump, I cannot wait for the remote. It seems like it will make things easier. Riley currently wears his pump in pockets sewed into his waistband. So, every time he needs insulin he has to dig in his pants and fish out his pump. It will especially come in handy for dosing in the car.

● My mom is doing better, but still doesn’t have any real answers as to what is going on. Over the past 9 months she’s been in the hospital 4 times. She’s been to the ER 5 times at 3 different hospitals. She’s seen 3 neurologists, a rheumatologist, a psychiatrist, a cardiologist, and a gastroenterologist. She’s even had gallbladder surgery. Everyone she’s seen tells her they can’t find anything wrong with her. Whatever is going on is neurological but no one can seem to put their finger on what is causing her symptoms. She got her 3rd neuro opinion from a physician at Duke a couple of weeks ago. He’s given us more hope than anyone else. She goes for a sleep-deprived EEG on Thursday. Her test is at 10:00 AM and she has been told she cannot sleep past 12:00 PM on Wednesday. That means she has to stay awake for 22 hours. I can’t imagine even trying that. Of course, I’m sleep-deprived all the time. What with sugar checks and belly pain I’m lucky to get 5 hours of sleep per night. Luckily, Holden is on spring break this week. He has volunteered to stay with Mom Wednesday night and help keep her awake by playing games with her and stuff.

● Michael and I are trying to save up a down payment so we can build a house. At first, we were talking about buying a house, but we changed our minds about that. We’d rather have something we built together. We have found some land we’re interested in, but are trying to save up enough money to make a down payment on the land and house at the same time. I’m just hoping the land isn’t sold before we can get it. But, if it is, it is and we’ll have to find something else. Saving up a down payment wouldn’t be as hard if Riley wasn’t in private school. I’ve said before that the local public school system here leaves much to be desired. Holden went to private school and Riley is still there. Unless some drastic changes are made to our school system he will be there until he graduates. So, in addition to saving up for the down payment we are also saving up for a tuition payment.

● My wedding anniversary is on March 11th. We will have been married for 10 years. I really do love Michael more now than when we got married. We’ve been through a lot together the past 10 years, the toughest being Riley’s diagnosis. Somehow we always make it through. I love him very much and I am very blessed to have found him. We don’t really have plans to do anything special. We had talked about going away for a couple of days, but had to nix that plan due to a) my mom’s health b) trying to save money for a down payment and c) not wanting to take any more time off of work because I’m already taking time for my surgery. Like I said Holden will be home this week, so I’m sure we’ll go out Friday and eat and go to a movie of something while Holden watches Riley for us. It’s not important what we do, what’s important is that we made it this far and we’re more in love than ever. It’s nice to know I can trust him and that he will always be there for me. Knowing that whatever I go through I don’t have to do it alone is a big comfort to me.

Geez, I guess that’s enough for one day. I really don’t need to go so long without posting anymore. I will try to post again soon, but I’m not making any promises. I’m going to be busy cleaning house and pre-preparing meals…

Kinder than necessary

2010-02-04T12:10:00.002-05:00

I started to write a blog post and deleted it. It was just way too negative. I have a lot going on in my life right now. My mom is still sick with no answers, a piece of land we were looking at to build a house fell through, I have to have surgery…

Anyway, not going into details about the negative today. It’s just too easy to get sucked into a black hole when I think about it.

So, a few positives…

** Holden is doing great in college. Last semester he got 4 A’s and 2 B’s. The B’s were in his easiest classes (sociology and music). If he had done what he needed to do in those classes he would have had a 4.0. But, I’ll take a 3.7. It’s not too shabby either.

He’s enjoying college and doing well living on his own. He has yet to bring home even one item of dirty clothes for me to wash. It makes me think I didn’t do such a bad job raising him after all.

Also, his birthday is tomorrow. He will be 19. I can’t believe it’s been 19 years. They really have flown by.

** Riley’s sugars have begun to behave for the most part. He’s had a few lows and a few highs. He was going into the 300s at least once a day, but that hasn’t happened in a while. His nighttime numbers, which have always been a challenge, have been great lately. I’m just going to try and enjoy it while I can. I know tomorrow everything can change and I’ll be cursing his meter again.

** On the diabetes front, Riley’s pump warranty expires next week. I am already in the works to get an Animas Ping. He has an Animas 2020 now and we love it. The Ping has a remote and I cannot wait for that. Right now he keeps his pump in a pocket sewn into the inside of his pants. So, we have to dig around in the pocket every time he needs to bolus. And, when he’s strapped into the car it’s even more of a pain. So, yay to diabetes technology!! I can’t wait to get the remote for his pump.

** I saw this quote in a doctor’s office the other day and it really struck a cord with me. Like I said before, I have quite a few things causing stress in my life right now. But, I am truly blessed all at the same time. Anyway, this quote reminded me that everyone has their own things that they are going through. We often have no idea what the bank teller is going through or our waitress at a restaurant, or even our co-workers for that matter. So, we shouldn’t be so quick to jump to conclusions about people.

The quote is: “"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Truer words were never spoken…

Endo Rant and an Ode to Dr. M

2010-01-19T09:43:00.001-05:00

Riley had his endo appointment on Friday. His A1C had gone up from 7.2 to 7.8. I wasn’t surprised. On the way to the appointment Riley and I took a guess as to what his A1C would be. I said 7.8 and he said 8.1. I’m glad, at least, that I was right and he was wrong.

December was pretty rough on his numbers. There were highs and lows (mainly highs) with no pattern to them. Still, I knew I hadn’t been on top of his numbers like I should. I knew I didn’t adjust basals as often as I should. I have no excuse as to why. I just know I could have, should have, done better.

This was our second visit to this endo. Our first visit was quite pleasant. I liked him and he was quite pleased with Riley’s A1C of 7.2 and said his goal for Riley was 7.5. Last time he didn’t recommend much of anything other than a slight little basal increase. He didn’t like that Riley’s basals were a little higher than his bolus, but other than that he was pleased. He did say that sometimes when basals get like that he orders to have the child to go on a set basal rate all day. That was not a pleasant thought for me.

I knew, without a shadow of a doubt, that Riley’s A1C would be above 7.5, so I wondered what the doctor would say this time. I didn’t know him well enough to know if he’d fuss at me or not.

The nurse came in first. She looked at the numbers and graphs I had printed out from excel. She looked at his basal to bolus ratio. I told her we’d had a rough couple of months to which she replied, “I can see that.” Then, she made a comment that he had one night that he was 57 at 3 AM and another where he was 315. She just raised her eyebrows like that had never happened before. But, unfortunately it has, way too many times to count. That is why I have been sleep deprived for the past 4 ½ years.

Then, she wanted to know how often we change sets. I told her every 3 days. She suggested we try every 2 days instead to see if that helped. I told her that I really didn’t want to do that, that a needle stick every 3 days was enough. I also told her that Riley goes low with most site changes, even though I don’t fill his canula and decrease his basal 60% for 3.5 hours. It’s just one of those things. (Not to mention the increased cost…)

She looked at me and said, “It’s because it’s fresh insulin. That’s why he goes low.”

I looked at her and said nothing. I know from my (almost) 4 years of experience with the pump that it is not fresh insulin. That’s what I used to think too. But, there have been times when Riley’s insulin was starting to get low and it wasn’t quite time for a site change and I just put in fresh insulin without changing his set and he didn’t go low at all. She went on to say that since that is what causes the lows that changing every 2 days would make more sense because the insulin wouldn’t seem as new.

Huh? She lost me there. Again, I looked at her and said nothing. Then she said we’d see what the doctor said about it.

She checked out Riley’s pump sites and said they looked fine. Then, she checked out his feet, which, thankfully, were fine too.

Then, I mentioned how I knew his A1C would be up. She went out to check and came back saying it was 7.8. I guess she saw me cringe and she said, “Oh, don’t worry about that. We have kids that come in with 9’s and 10’s.” Then, she shut the door and walked away.

Then, the doctor came in. He said that Riley’s A1C was up from last time but that it was still “very good”. He went on to say that his goal for Riley was 8.0, so 7.8 was just fine. So, let me get this straight? When he was 7.2 his goal was 7.5, but now that he’s 7.8 his goal is 8.0? I don’t get it. I don’t go to the doctor’s office to be pacified. I go there for help. I don’t go to get a pat on the back and to get told I’m doing a good job when I know that I’m not. They didn’t even ask how often I’d been logging and adjusting basals.

Then, the doctor went on to say, “I’ve had kids in here who’s A1Cs were 13 or 14. So, 7.8 is good.”

Let me just stop here. I have NEVER compared my kids with other kids. I have NEVER compared standards for my kids with other people’s kids. I HATE it when people do that. My son is not everyone else’s son. He is my son and I know what his A1C could be. That’s like Holden or Riley making a “C” in a class. They have always been capable of straight A’s. It doesn’t matter to me that everyone else in the class made a C too. What matters is that I know what kind of grades my children are capable of making. I also know that some kids are just not capable of that. Some kids are happy if they make a “D” and they really worked for that D. I know that. I work in a school system. Every child is not the same. And, if my children were only capable of making a C or D, then I’d be quite pleased with a C. But, they are capable of all A’s and B’s so that’s what I expect. I really, really don’t care what the kid next to them made.

If I were only capable of having Riley’s A1C in the high 7’s, then I guess I’d have to be OK with that. But, I know I’m capable of better, at least for now. I also know that once he hits puberty and his hormones go all out of whack I might be elated to have it at 7.8.

Furthermore, I know there are parents reading this right now who would be thrilled with a 7.8 and don’t understand why it bothers me. I know parents who are very vigilant with their children’s logging and adjusting of basals and they still don’t see 7’s very often. For whatever reason, their children’s sugars are harder to stabilize. Which brings me back to my earlier point that everyone is different and shouldn’t be compared to one another.

Now, that I’ve ranted about that for a bit, let me say that the 7.8 didn’t upset me all that much (contrary to all the stuff I just said). I knew that’s what it would be and I knew what I needed to do to see that change. He’s been that high before and I’ve gotten it down. I also know that it happens from time to time and you make adjustments and move forward.

What got me was the constant comparing of how bad his number could have been, that his A1C wasn’t a “bad” as a lot of kids. I kind of felt like I was being chastised for caring about his A1C.

OK, let me continue with my rant, which at this point, is probably incoherent to most of you.

The doctor went on to say that Riley’s basal to bolus ratio was dead-on. It was 50/50 just like it should be. But, you see, I know that Riley does better with it being 45/55 or so. I know that doesn’t seem like a big difference but with his tiny doses, it is. For example if his total daily dose of insulin is 16, then a 50% basal would be 8.0. A 55% basal would be 8.8. To the adults out there, that may not seem like much of a difference. But, for Riley it is a huge difference. And, I know from experience that’s really where it needs to be.

Then, the doctor goes on to say that sometimes parents do too much. And, then went on to say that I am one of those parents. He said I needed to back off a bit and stop checking so often. He said that there was no reason to check Riley 2 hours after he had breakfast because I knew he’d be high anyway. First off, I don’t check Riley 2 hours after he eats unless he says he feels low or something. The only time Riley’s sugars are checked is at meals and snacks and if he says he feels low. He is also checked a couple of times in the middle of the night. I’ve already gone over why we do that. For example, Riley eats breakfast at 7 AM, he is not checked again until 10:45 AM when he is about to eat lunch at school; then, again at 1:45 PM for snack. Excessive, I don’t think so. Often, unless he says he feels low, he’s not checked again until between 5-6 PM when he eats supper.

Secondly, when I’m trying to get his basals right I’ll probably test more. Because, guess what? I don’t want him in the 300s every single day 2 hours after breakfast. That can be fixed most of the time. Plus, how do I know what his carb coverage should be without testing after meals? (Man, you should see me typing this right now. I bet my keyboard is glad it doesn’t have feeling.)

Then, the best part of all, the doctor told me that because I was doing too much for my child, I had probably gotten his basals all out of whack. He didn’t quite use those words, but that’s basically what he said. He then said he had taken Riley’s total basal and divided it by 24 and come up with 0.35. He said he wanted Riley’s basal to be 0.35 all day and all night. Then, he said he wanted his carb coverage to be the same all day too.

I had kept my mouth shut up until then but when he said that I had to say something. Riley’s carb coverage is about the same all day, for the most part, anywhere from 25-27g. But, at breakfast, it is 20g. It has to be. Otherwise he’d be really, really high. When I told him that he said, “OK, we’ll keep his breakfast coverage at 20g”, like he was throwing me a bone or something.

And, I was thinking, “You’re darn right I’m keeping it at 20g. I don’t need your permission to do that.”

Anyway, that’s the gist of what went on. He handed me my instructions and sent us on our way.

I know I’ve made him sound like a horrible person. But, I don’t really think that he is. I think it all boils down to the fact that we had the very best endo in the world before. After you’ve had the best, everyone else pales in comparison.

Dr. M would have looked at those sugars in the middle of the night and said, “Why do you think he was 57 one night and 315 the next? Was it increased activity? Did he eat something different for supper?” And, if there wasn’t anything out of the ordinary she would chalk it up to just one of those things and move on.

She would always ask Riley how he was doing. The question she always asked him, without fail, even when he was 3, was: “Is diabetes keeping you from doing anything you want to do?” She always asked how school was going and how soccer was. During this endo visit Riley lay on the bed reading a book the whole time. The only thing the doctor asked him was what he got for Christmas. Otherwise, it was like he wasn’t even in the room.

Riley always answered Dr. M’s question with a “no”. But, I know that if he ever said yes, she and he would come up with a plan of how to change it.

Also, when Riley’s A1C was up to 7.8 she would say she was OK with it, but she knew I wasn’t so we’d sit and figure out what to do about it. On our very first visit, she brought up how much we were checking in the middle of the night. When I told her why, she never brought it up again.

Dr. M would always make suggestions about what to do and then ask me what I thought. There were times when our opinions differed. She always said that she trusted my instincts and we’d try it like I wanted it. She said more than one time she would look at his basals and wonder why it was like it was and then she’d look at his sugars and see why I had done what I had done.

I guess it all boils down to the fact that Dr. M may have gone to years and years of medical school and she had years and years of pediatric endocrinology under her belt, but, she still realized that, when it came down to it, I was the expert when it came to my son. My 4+ years of experience with his disease trumped her 30+ every time. Because, we all know everyone with D is different. There are no cookie cutters when it comes to this disease. Dr. M got it. I’m afraid many doctors do not.

OK, rant over. I don’t despise Riley’s doctor. I think he’s doing what he thinks is best. I don’t have plans to change endos any time soon. (unless, Dr. M comes out of retirement)

And, by the way, I didn’t make Riley’s basals 0.35 across the board. I made a few basal changes and that was it. I’m not saying that the time won’t come that I might have to try it, but that time is not right now.

When, I was talking to Michael about it, he said, “What would Dr. M tell you to do?” I said she would tell me to trust my instincts and he said that is exactly what I should do.

So, right or wrong, that’s what I’m doing.

Rambling Ranting Time

2010-01-05T09:43:00.001-05:00

I’ve had lots of blog posts running through my mind lately. But, due to some sort of virus issue with my computer I’ve been unable to get onto blogger. I finally found a solution to the problem today.

Where do I start?

Frustration…yeah, that’s where I will start. Riley’s sugars have been out of control for the past month or so. He’s gone high several times a day, with no obvious rhyme or reason to it, no pattern, no red- flag- here’s-where-you-need-to-adjust-basals, and, no obvious need for a basal increase. By “obvious need for a basal increase” I mean his ratio is dead on. I learned a long time ago that Riley’s basal needs to be about 55% of his total daily dose of insulin. Well, it is. Yet, still the highs. I say high, but he woke up with a blood sugar of 66 this morning. That, after going to bed with a sugar of 351.

I know I’ve been there and done that before, yet still frustrating. And, I know I shouldn’t focus on his A1C, but I can’t help it. His last one was 7.2. His new endo was amazed at it and thought it was great. Well, we go back next week and, somehow, I don’t think he’s going to be quite as amazed. I’m guessing 7.8, if we’re lucky. Aggggghhhhhhh!!!! I just want to scream. But, experience tells me that it won’t help, it will only give me a sore throat.

Maybe he’s growing? That’s what I usually blame for the wacky sugars. Another problem is that Riley has been out of control hungry lately. By that, I mean he is asking for food on an almost hourly basis. He’s started checking his sugar more frequently claiming he feels low (he rarely is). I think he’s checking because he hopes his sugar is low enough to eat. And, who am I to deny him food? Yet, he’s usually in the 200s when he checks and he just ate an hour before, and……

Agggggggggghhhhhhhhh!!! (Yeah, still not helping.)

Every time I tell him he can’t eat, I feel guilty. Yet, if I let him eat and his sugar is high I feel guilty too. Still, in the back of my mind I have this nagging feeling that by not letting him eat whenever he wants it is going to bring up issues of control later.

Maybe his carb coverage needs adjusting? Maybe I just need to let him eat and let the chips fall where they may. His sugars are sucky anyway, he might as well eat. It doesn’t help that there are still a few holiday treats at the house. Santa is forbidden from bringing chocolate and candy next year.

I guess the best thing to do is let him eat, but keep it low carb and healthy? Sounds good on paper. Doesn’t translate so well into the real world.

I am just so sick of this disease. Diabetes has a way of making me feel like a failure. I feel like I’m not doing enough for Riley, yet, strangely, at the same time, like I’m doing too much. How does that work?

OK, rambling ranting time is over. Any suggestions would be appreciated. I know he needs to eat, he’s obviously growing, but any suggestions on what to do about his basals?

I have good things going on too, lots of them. I am blessed beyond measure. I am excited about what 2010 might bring.

Yet, today, I just need to vent about this stupid, terrible, very bad disease that makes me want to pull every hair out one by one.

Going Solo

2009-12-17T08:53:00.001-05:00

The birthday party/sleepover was last Friday. At snack time at school Riley’s teacher called to tell me that everything was fine but that Riley didn’t want to eat his snack. It is VERY unusual for Riley not to want to eat, so I asked her what was going on with him. She said she thought he was just excited about the party. Since the party was right after school, I told her to tell him he had to eat snack since I didn’t know when he’d be eating again.

I picked Riley up right after school and took him to his friend’s house. The friend only lives about 10 minutes away. On the way there I asked Riley why he didn’t want to eat snack. He said that it was his stomach. I asked if his stomach hurt, to which he replied: “No, it just kind of feels like it does before a soccer game.”

I told him that just meant he was excited about the party. Then he said he was excited, but he was nervous too. I quickly went into, “Everything will be fine. You are a big boy and you know what to do to take care of yourself. And, I’ve talked to Mrs. B. about everything and she knows what to do for you too.” It upset me a little to know that he was nervous about “going solo” for the first time. But, it also made me proud that he cared. He could have just had the mindset that he wouldn’t bother with his diabetes while he was there.

When he got to the friend’s house all of the kids where playing in the long driveway. I dropped Riley off to play with them and checked one last time to make sure he had the cell phone in his pocket.

When I got to the house the mom and I chatted for a while. Then, I took a deep breath and handed her Riley’s bag with his juice and machine in it. Once again, I found myself reassuring yet another person that everything would be fine, when I wasn’t so sure of it myself.

As I left I saw Riley running around the yard playing with his classmates. Right then I felt a peace about it. I knew I had made the right decision to let him go to the party and to let him try it on his own.

Not only did I leave him at the party alone, but then I left to go shopping an hour away. Of course, my mom and Holden where only a few minutes away from Riley if anything were to arise that Riley couldn’t handle on his own.

Fortunately, nothing like that ever happened.

Riley called at around 5:30. “Hey, Mom, my sugar is 190 and I’m getting ready to eat pizza and some chips.” I told him to call me back as soon as he was done and tell me how much of everything he had eaten.

About 15 minutes later he called again. “Hey. I ate one piece of pizza, 3 cheese doodles, a cookie, and a piece of cake.”

I asked him if he ate the pizza crust too so I’d have a better guess of the carb count. I did the best I could estimating carbs without actually seeing the food. He bolused while on the phone with me and then, he was off to play some more.

At around 9:15 I hadn’t heard anything else from him. I knew he probably needed to eat a snack soon so I called him.

“We’re outside starting a fire to roast marshmallows.” I told him to call me when he was done.

A little while later, “I ate 2 marshmallows and my sugar is 180.” Since I didn’t know the carb count right off hand I asked him to ask the mom to read out the serving size and the amount of carbs. Once again, he bolused while on the phone with me.

A few minutes later the phone rang again, “We’re having weenies too.” I made sure they were not putting them on buns before I told him not to worry about the carbs for the weenies.

I didn’t hear from him anymore that night. Michael went to pick him up at the designated time, 1 AM. He said they were lying in the floor watching a movie and that most of the kids were already asleep.

I was sitting on the couch waiting when they pulled into the driveway at about 1:15. The smile on Riley’s face was priceless. A check of his sugar before tucking him in reveled that it was 71. He drank a juice and got a basal decrease and drifted off to sleep.

The night was a complete success. I am so proud of my little man for doing such a great job at the party. He did everything just like he should. It’s just another assurance that he really is going to be OK and that this disease does not hinder him, it only makes him stronger.

What if....

2009-12-09T19:06:00.003-05:00

The sleepover that I posted about earlier is Friday. While Riley will not be spending the night, he will be attending by himself.

Riley has never been on his own at a birthday party before. I always attend parties. This same boy had a party last year and Michael and I were the only parents who stayed. I tried to blend in, but somehow don't think anyone thought I was really a 7 year old boy.

Like a drug dealer I would pull Riley over to the side. There were a few whispers and a black bag and discussions of being high. Then, I'd deliver the drug and he'd run off to play some more.

Riley has gotten to the age that he really wants to go on his own. And, I'm OK with that. Or, at least I'm trying to convince myself that I'm OK with it.

Riley checks his own sugars and gives his own insulin every day at school. I know he knows what to do. I know he'll be OK. Plus, I've given the mom a heads up about what needs to be done. Riley is going to take a cell phone with him. He will call me at every sugar check and every time he eats. I will count carbs over the phone the best I can and pray for the best. My biggest fear is lows. I don't mind if he runs high as much as if he has lows while there.

As I write this he has fallen asleep on the couch. This after a pretty brutal low that struck with over 2 units of insulin on board. I decreased his basal and he got a snack and a juice, but it still kicked his butt. I just decreased his basal a little more. I will sit and wait for the impending high.

What if this happens at the party? I don't know. I'll deal with it the best way I know how. And, I've learned over time you just can you live your life for the what ifs.

Even though I've learned not to live according to the what ifs, they still scare the hell out of me.

Just When I Think I'm Out, You Pull Me Back In

2009-12-04T11:07:00.004-05:00

I just wanted to say a big thank you to everyone for your kind comments after yesterday's post.

I have been neglecting this blog for quite some time. I do check in on the occasional D-blog every now and then and even comment sometimes. But, I've been out of touch with D-blog ville for a while.

Even so, whenever I need you guys you are always there to lend an ear or a virtual hug.

I cannot express how your comments have helped. First, to know you've had the same issues with sleepovers made me feel like I'm not alone and neither is Riley. We are all fighting this thing together and doing it to the best of our ability. We all screw up along the way because we are human. I know that all I can do is make what I think is the best decision at the time and learn from that and move on.

Also, I really felt very guilty for the ice cream treat, but you guys made me feel better when you said you would do the same thing.

When Riley was diagnosed I mainly worried about what the highs and lows were doing to his body. But, as he grows older the emotional and mental aspect seem to bother me more. I guess maybe because I'm a nurse at a high school and see how much certain things can affect a child's life. Parents play a HUGE role in the mental health of their children and I just don't want to screw it up. There is no rule book and we're all just really winging it.

I know that how I handle his D now will help him handle it in the future. Sometimes I just don't feel strong enough to handle it like I should.

It's nice to know I can come here and you guys will help provide that strength for me.

Sometimes You've Just Gotta Let It Out

2009-12-03T09:00:00.000-05:00

I haven’t come here to vent in a long time. Well, today I’m breaking that dry spell.

Let me start off by saying: I. Hate. Diabetes. With. An. Intense. Passion

Ahh, I feel better already.

Riley’s sugars haven’t been behaving lately. Well, when do they ever behave? But, for the past couple of months I’ve been able to whip them into shape pretty quickly when they did get out of line.

He has started running high quite a bit. I went from making basal adjustments every 2-3 weeks to making basal adjustments weekly, sometimes 2 times a week, with little results.

I knew it was coming. I’ve been around D long enough to know that, but still it pisses me off every time.

Couple that with the fact that Riley has been invited to two birthday parties. And they are both sleepovers!!! Oh, the joy.

When I got the mail yesterday I opened an envelope and received the first invitation. As I read it I could feel the tears forming in my eyes. I knew immediately that he couldn’t actually spend the night. It’s just not doable right now. Yet, it made me so mad that he couldn’t. It just gave me another reason to hate diabetes and what it does to my child. I dreaded telling him that he couldn’t stay. I don’t let him use diabetes as an “excuse” not to do things, but there I was about to tell him just that, that he couldn’t do something because of his diabetes.

I was sitting on the couch thinking of how to approach the situation when he opened his book bag and handed me another envelope. “B. is having a sleepover for his birthday!” He beamed as he handed me the envelope and my heart sank.

B. is Riley’s best friend. I’m sure Riley had been thinking of how much fun they would have all day. I could feel the tears stinging my eyes again. A million thoughts ran through my mind. What if I asked B’s mom to check his sugar? What if I snuck in at 3 am and checked it myself? What if I gave Riley a cell phone and called and woke him up to check himself?

I quickly realized that none of those were feasible. You see, we have always checked Riley’s sugar during the night. There are not many nights that I don’t give insulin or make a basal decrease. Riley has never woken himself up when he was low. Not checking is just not an option. And, putting that on someone else to do is not an option either. There are just too many variables to consider.

Then, I got to thinking. Riley is only 7. I’m pretty sure I wouldn’t have let Holden spend the night off with a friend at that age. So, I used that approach instead. Besides, due to a comment Riley had made earlier in the day I really didn’t want to use diabetes as the reason.

“Riley, I know you really want to spend the night at B’s house, but I think you’re still a little too young. I wouldn’t have let Holden spend the night away at your age either.”

“How about if I talk to B’s mom and see what time bedtime will be and I will pick you up right before everyone else goes to bed? Then, you’ll really only miss the sleeping part.”

“OK”, he said. But, I could tell he was disappointed.

Would I have let him spend the night off if he didn’t have D? I don’t know. I really can’t answer it. He does have it. I don’t know how to make a decision about him without taking diabetes into account. I know one day the time will come for a sleepover, but not right now.

Not long after this conversation Riley said his sugar felt low. It was 65 with 1.8 units of insulin on board. For Riley, that is a ton of insulin. So, I decided to take him for ice cream.

Yes, I just got through saying that Riley had been running high for days. Maybe ice cream wasn’t the best decision at the time. But, because of something Riley had said earlier I did it anyway.

Earlier, before I saw either of the invitations, I told Riley we had to go on and change his needle. It was a site change day anyway and he had a sugar in the 300s and one in the 400s at school. I knew it needed to be changed soon.

Riley was giving me a hard time about it and really dragging his feet. I told him it was important to go on and get it changed because if he didn’t his sugar might be in the 500s.

He looked right at me and said, “I don’t care if my sugar goes into the 500s!”

My stomach lurched. “Why not?”

He shrugged his shoulders, “I don’t know. I just don’t care.”

I left it at that. I did the site change. And, then when his sugar went low I’m not sure why I decided ice cream was appropriate.

Well, yes I do. I felt guilty. I felt guilty because I can’t “fix” him. I felt guilty because he really shouldn’t have to care what his sugar is. He should be able to eat all the ice cream he wants without worrying what it might do to his sugar. And, I felt guilty because he’ll never be able to do that, at least not without consequences.

We got in the car. On the drive over I glanced at him in the rear view window. The glow from his DS was on his face. He looked so sweet. And, once again, the tears welled up in my eyes. All I could think was, “It just isn’t fair. Why couldn’t it just be me?”

I don’t know why diabetes gets to me like that sometimes. It is a very rare occasion when I let diabetes get me down anymore. But, it still happens. And, every time, it shocks me, like I thought I was immune or something.

Riley turned off his DS and I took it as an opportunity to start a conversation.

“Hey, Riley, earlier today when you said you didn’t care if your sugar went in the 500s or not, why did you say that?”

All I got was a shoulder shrug.

“Did you really mean it?”

“I don’t know.”

“Well, you know it’s OK to get angry about diabetes sometimes, but you always have to take care of yourself. Sometimes your sugars are going to be high and there really seems to be no reason for it. But, if you know how to keep it from happening, then you should always try to do that. You should always take insulin whenever you eat. And, you know you shouldn’t eat ice cream and sweets every day. No one should do that, sweetie, even me.”

“And, even I eat things I shouldn’t. I eat things that have too much fat in them and that’s not good for me. But, I try not to do it all the time. So, I know that sometimes you may eat things that you shouldn’t. But, what is important is that you always take insulin for it.”

“Do you understand?”

“Yes. Like it’s OK to eat cake at B’s birthday party. I just don’t need to eat stuff like that every day. And, I just need to call you and ask how many carbs it is so I know how much insulin to take.”

“That’s right, little man.” I’m trying to suppress the uneasy feeling I have from having him go to his first birthday party by himself. I’ll deal with that later.

As we’re waiting in the drive-thru for his chocolate ice cream cone, Riley asked, “Hey, Mom, how am I ever going to get to go to a sleep over? What will I do about checking my sugar in the middle of the night? Maybe I can just set an alarm clock and check it myself.”

“Maybe”. And, there’s the damn tears again stinging my eyes. My 7 year old should not have to worry about things like that. He just shouldn’t.

Much to my chagrin the cone was piled high with chocolate ice cream. But, Riley enjoyed every last carb-filled bite of it. And, his sugars ran high all night long because of it.

And, his sugars haven’t been under 200 today until a few minutes ago when it was 150.

I think I can deal with the sugars if that’s all there was to deal with. It’s the other things that really get to me. Things that affect his psyche. Things that make him feel different. Things that no child should have to worry about.

The sugars will eventually come down. But, I don’t know how long these emotions are going to affect him. And, that’s what really bothers me.

Three Years Free Turns Four

2009-11-19T10:18:00.000-05:00

I started this blog 4 years ago today (on my 32nd birthday).

I started this blog to connect with others going through the same thing as me. It quickly became not only a way to connect, but a good way to get my emotions out, to vent.

This is post number 457. There have been some pretty downer posts, especially in the first couple of years. There were days when I felt like I could not go on. I'd sit and pour my heart out in my blog and that would help. It helped to keep my emotions from spilling over into my every day life. And, you guys were there to "listen" and lend an encouraging word or just to say "I've been there too and it does suck."

I've never met any other d-bloggers. Still, I feel like I know some of you. Plenty of you always had a kind word to say just when I needed it most. The diabetes blogging community has grown by leaps and bounds in the past four years. When I first started there was a handful of parent blogs. Now, there are too many to count. And, most of us whose blogs were in the infancy stages back then don't blog as much as we used to blog.

Every once in a while one of them will update and I'm delighted to see their kids and hear how they are doing. I enjoy reading the newer blogs also. I see so much of my "old" self in their posts.

And, it's not just the posts of the parents. I have found a lot of strength and encouragement from the ones who live it every day. I read their posts and know that Riley really is going to be OK.

So, to all of you d-bloggers, thanks for letting me be a part of your world.

Who knows? Maybe in another four years the title of the blog will be changed to "My Son Used To Have Diabetes". One can always hope.

All In Due Time

2009-10-29T12:34:00.004-04:00

Four years ago I was at the worst point in my life ever. My 3 year old son had been diagnosed with Type 1 diabetes just 3 weeks prior. My days consisted of clock-watching and finger-poking. I never slept through the night. I would sit and stare at the numbers in Riley's log book for hours trying to figure out what to do about them. I would lock myself in the bathroom and cry and then sneak in Riley's room at night while he was sleeping and pray and cry some more.

I was miserable. I was inconsolable. My son had an incurable disease and I was helpless to do anything about it. I felt guilty. I felt guilty because I felt it was my fault he was going through all of this. I felt guilty because when he looked at me with his tear-filled I eyes I couldn't do anything but cry myself. I felt guilty because I didn't see it coming, didn't take him to the doctor sooner.

I couldn't think of anything but diabetes. My whole day revolved around carb counting and insulin dosing. I scoured the Internet and read everything I could about Type 1 diabetes. I read medical articles as well as postings from other moms of kids with T1.

I tried my hardest to put on a brave face for everyone, especially Riley. I did not want him to see the pain in my eyes. I refused to let him see me cry. I didn't want anyone in my family to see my struggles. I felt so weak. I knew I needed to suck it up and move on, to find happiness again, but I just didn't know how.

Five months into Riley's diagnosis he was placed on a pump. Those first 2-3 months after that were hell. I often wondered what we'd gotten ourselves into. But, after those first few months I fell in love with his pump. Still, it took me a while to get out of the MDI mentality, to figure out that Riley didn't need to be on a schedule. It took me a while to learn to decrease or increase the basal for certain situations. It took me a while to not cringe when I saw the tubing sticking out of the waistband of his pants.

Then, in October 2006, Riley's one year anniversary came and went. Those days leading up to it were heart-wrenching. I relived the pain of his diagnosis all over again. I was still grieving for my son on an almost daily basis. I didn't cry every day, but there wasn't a day that went by that I didn't think, "Why my son? Why does he have to go through this?"

Fast forward 3 years; fast forward through starting Kindergarten, the flu, numerous ear and sinus infections, birthday parties, starting sports, learning to check his own sugar and do his own insulin, explaining to others over and over again what type 1 diabetes is, knowing you have to live it to really understand.

There were more tears. But, the interval between the tears got longer and longer. The "whys" got less and less frequent and now that has stopped all together. The why just does not matter anymore. Tears, while I'm sure they are not gone for good, have slowed down to maybe a couple of episodes a year.

I hate to admit it, but I used to look at Riley and all I could think of were the things he couldn't do, how unfair life was. Now, those thoughts never cross my mind. There isn't anything he can't do. Some things may be harder for him, but life is like that in one way or another for everyone.

Fast forward 3 years and that brings you to where I am right now.

I hardly ever think of diabetes during the day any more, other than when I have to think of it. I still log sugars. I still pour over them from time to time. I spent about an hour last night analyzing sugars and figuring out what to do about them. Riley has been having a lot of lows lately. I made a carb change as well as a tiny basal change. Now, I have to wait and see if that helps. I still get occasional calls from school about Riley's sugar that forces me to think about it.

I remember early on in Riley's diagnosis wondering how on earth some of the moms whose blogs I read could be so happy. How could they just go on with their life like diabetes didn't bother them? I could not fathom ever getting to that point.

But, here I am right there. I now realize that diabetes did still bother those parents, they had just learned how to deal with it. It took me longer than some parents to get here. And, I know some parents who have children who were diagnosed before mine that haven't quite reached that point yet. We all have our processes we have to go through.

4 Years In

2009-10-06T08:30:00.000-04:00

14,600 finger pokes

910 shots of insulin

426 site changes

3 blood draws

1 very happy, healthy little boy who I love more than life itself

I want it so badly I can taste it

2009-10-02T14:21:00.005-04:00

We met Dr. Benjamin, Riley’s new endo, last week. I was a little wary about the visit. We absolutely adored Dr. Morris and I knew there was no way we would find anyone else like her. I told Michael on the way to the appointment that as long as the doctor didn’t say we tested too much or that we shouldn’t test sugars in the middle of the night, then I’d be OK.

The first thing the doctor said, after introducing himself, was how awesome Dr. Morris was and that he actually trained under her when he first started. Then, he said how his philosophy was much like hers in that he was there to help us fit diabetes into Riley’s life and not Riley’s life into diabetes. That’s when I knew we’d be just fine.

All in all it was a very pleasant visit. Even though I thought Riley’s A1C would be decent I am always on pins and needles waiting for the result. After Dr. B gave his little spiel he said, “Riley’s A1C is awesome, by the way. Is it always in that range?”

“What range is that?”

“Well, it’s 7.2 today.”

(Yay!!!) I told him it was hovering around there for a while, but due to a bad school year last year we’d gotten up in the 7.8-7.9 range and worked hard to get it back down, with the last one being 7.4.

Dr. B then said that his goal for kids Riley’s age was 7.5, so he was very pleased with the 7.2.

Riley’s sugars have really been doing well lately. Of course, diabetes still lets me know who the boss is every now and then, but for the most part, everything has been going well.

I just opened up an email with an attachment of the newsletter from Riley’s school. There was an announcement in it about Walk of Hope which will be held on October 7 to raise money for a cure for Type 1 diabetes. (All proceeds will go to Dr. Faustman’s awesome research going on at Mass General Hospital. Please go here to make a donation. If you do, please comment or email me and let me know. I’d love to add the total to the amount raised at the walk.)

As I read it my eyes filled up with tears and started to spill over onto my cheeks. It caught me completely off guard. It came out of nowhere.

Well, not out of nowhere, I guess. It came out of almost 4 whole years of worry, blood sugar tests, needles, highs, lows, carb counting, praying, crying….

Riley’s 4 year anniversary of his diagnosis is coming up on Tuesday. I don’t know why it gets to me every year, but it does.

October 6, 2005 will always be imprinted in my memory. It is the thought of that day, and knowing that right now, other parents (and their kids) are having a day just like that of their very own, that make me want a cure so badly I can taste it.

I used to be so sure that one day I would taste it for real. Now, I’m not so sure, but I’m not going to stop trying to make it happen. I will fight for a cure, until my very last breath. It’s the least I can do for Riley. I said this several years ago and I still mean it: I fight for a cure, because I don’t want Riley to ask me one day why I never tried to fix it. I want to be able to tell him that I tried my very best.

Although, in the back of my mind, I fear that my best is not good enough.

Pumped Up

2009-09-23T07:00:00.000-04:00

Riley's pump finally arrived around 5:00 yesterday afternoon. I was like a kid a Christmas when it arrived.

And bonus: He was using an Animas 1250, but they sent a 2020. It has a color screen and it's really neat. I also like that you can pick the time that you want to change carb coverage and target BGs. On the 1250 you could only adjust at them at the times already preset by Animas.

Off to meet the new endo today. I'll let you know how it goes.

Look Ma, No Pump!

2009-09-21T09:00:00.000-04:00

Around 2:00 Saturday morning, Riley's pump alarmed that there was 10 units or less of insulin left in his cartridge. Michael silenced the alarm and went back to bed. I was due to change his needle at breakfast anyway.

So, when his pump alarmed again at around 7:30, I didn't think much of it. Michael went to silence it again and I heard: "Penny, the pump screen is blank!"

My heart sank and I got a bad feeling in the pit of my stomach. I jumped up out of bed. I pushed every button I could on his pump. The back light would come on and the pump would beep appropriately when I locked and unlocked it, but I could not get anything to show up on the screen.

I called Animas and while I was waiting for someone to call back I changed the battery. I was really hoping that would work, but alas it did not. That's when I knew that it was bad.

I spoke to the very nice Animas lady and I was on the phone for less than a minute before she was taking down my address to send a new pump. Since it was Saturday the pump would not arrive until Monday. I guess she could hear the sound of defeat in my voice. She was very sympathetic to my plight. She asked if I had the pump settings written down somewhere and when I said yes she said, "Good job, Mom." That's when I wanted to ask her if she wanted to go explain to my 7 year old that he had to go back to injections for two days. My stomach hurt just thinking about it.

It had been at least 3 years since Riley had received an injection of insulin. But, just like everything else having to do with diabetes, he took it like a champ. He said he was hungry and wanted breakfast. I sat him down and explained to him that his pump was broken and he'd have to take a shot with breakfast. He shrugged his shoulders and said "OK". I really need to take some lessons from him.

Right now we're between endos. Well, not really between endos. We have one, we've just never met him. Riley's beloved Dr. Morris, who is the best pediatric endocrinologist in the world, had to close her practice in June, due to health problems. She recommended a doctor to us. Since we had been seen by her in June, I made the appointment for September.

When I made the appointment I spoke with the nurse (who, I learned, is Dr. Morris' best friend. Thanks for looking out for us Dr. M.) and she gave me the emergency number to call with problems. I dialed it and was immediately connected to some doctor I've never spoken to before. She said, "Oh, it's simple, you just take his basal and shave 10-15% off and that's how much Lantus he takes."

Sorry, doc, there is nothing simple about it. Since Riley's total basal is 8.40 units, she told me to give him 7 units of Lantus. Also, she was going to call in a prescription for new Lantus. The Lantus I had in the fridge had an expiration date of this month, but had been in my fridge (unopened) for a year and a half. I would rather be safe than sorry. I also had her order some more syringes for us.

Not to go into too much detail, but as of late my life has been very stressful even if you take diabetes out of the equation. My mom is still sick, with no real answers as to what is going on. Work is horrible, I was switched to being the school nurse at the high school with no warning at all and I've hated every minute of it.

Then, Riley's pump decided it needed a vacation. I went to the pharmacy and the doctor had not called in the prescription. The pharmacists ended up having to call her and get the info. All the time, I'm waiting and envisioning Riley's sugar rising as he had no basal insulin floating around.

I finally got home and gave him the Lantus. He screamed and said it hurt. Since then, I've had to chase him a few times to give him his NovoLog also. He's skipped snack a couple of times too, only because he knew if he ate he'd have to take a shot.

I will be so happy when his pump arrives later today. I'm sure the first thing I'll do is take it out of the box and hug it and kiss it.

I've always loved the pump, but these past few days have made me love it even more. I will go to help Riley take off his pants to get in the shower and fish around for the pump for a few seconds before I realize he doesn't have one on. When his sugar is low, I'll go to see how much insulin he has on board, only to realize that figuring that out is up to me.

Or, he was getting low in the middle of the night, and I went to tell Michael to decrease his basal and then realized you can't do that with Lantus. Or, he'll run around and around and I'll think "maybe I should decrease his basal".

Math has never been my strong suit. I've given all the injections, but Michael has been the one computing to determine how much insulin to give.

Yes, I've had a miserable weekend. Technology is wonderful. When the man in brown shows up at the door, I might even kiss him too.

Diabetes Is Expensive

2009-09-08T15:38:00.001-04:00

We all know how much it costs to effectively manage diabetes properly. There are the sugars machines (which I have yet to have to pay for) and the strips. The strips are where they really stick it to you. “Here have a FREE machine. Now, all you have to do is pay around $50 a bottle for strips so you can actually use the machine.”

Then, for those on a pump there are the pump supplies. Or, if you’re on MDI you have to buy syringes. Then, there’s insulin, two kinds if you use MDI.

But, that’s not the expense I’m talking about today. I will save my decline of health care/ insurance rant for another day.

Today I am talking about the expense of a cellular phone. To those parents out there with kids with D, your cell phone is your lifeline. It is how you are able to be a pancreas while being miles and miles away from your child. You are able to talk to teachers and nurses or your child and tell them what to do. You are able to be reached at anytime if needed for an emergency site change. My cell phone is like my security blanket.

A couple of posts ago I wrote that I had to switch schools with no notice. To say that I live in a rural area is putting it mildly. Because I’m in such a rural area cell phone coverage can be spotty at times. It has gotten better over the last couple of years and now 99.9% of the time I can be reached by cell phone.

Except now. The school where I have been reassigned is in an area where I do not have any cell service. To say this stresses me out would be an understatement. I have a phone in my office, but what good school nurse sits in her office at all times. Also, I don’t have a private line. All calls have to go through the front desk. The front desk line is very often busy.

If you remember, Riley was supposed to call me at every sugar check for instructions on what to do. Well, after the first few days, that plan had to go. His teacher kept getting a busy signal every time she tried to call me. A few days into the school year I drove all over creation to find a place that still sold beepers. I figured his teacher could page me and I could call her back on the school’s phone.

I showed up at work that first day and realized about 10 minutes after Riley was supposed to check his sugar that I still hadn’t received my page. I called his teacher who had tried calling Michael when she couldn’t get me and then ended up calling my mom. She had paged me several times and I never called back. I quickly paged myself and found out that the pager did not pick up inside the school building. I called the pager company and they said that happened sometimes and there is nothing that can really be done about it.

I had noticed other staff members talking on their cells at lunch. I found out they use a different cell company than I do. I can’t really switch cell companies since I’m under contract. So, I contacted the other cell company today to ask about a pay as you go plan.

They have a plan where I will have to pay an activation fee and a monthly fee and then so much per minute for every minute that I use the phone. So, after work today I’m going there and sign up for yet another cell phone with a different company.

Thankfully, the beeper was not expensive and I did not have to sign a contract. Hopefully, the new cell phone won’t end up costing too much a month. It should only be used if his teacher needs me. She’s doing just fine with lunch and snack on her own. She has been told to call for any sugar less than 80 and over 300. And, anytime he has to check his sugar when it is not snack or lunch (including before PE). Hopefully, I won’t use too many minutes a month since I’ll still have my regular cell for other calls. It’s the activation fee that gets to me.

But, it’s all worth it to make sure Riley is OK. It not only helps me, but I think it stresses his teacher out not to have me readily available when she needs me.

Labor Day Meme

2009-09-07T12:13:00.002-04:00

It's labor day and it's raining and I'm bored. Feel free to do this if you'd like...

How long were your labors?

Holden: Started first contraction at 6 AM and delivered him at 8:42 PM= 14 hours and 42 minutes

Riley: Started first contraction at 9 PM and delivered him at 12:18 PM the next day = 15 hours and 18 minutes

How did you know you were in labor?

The pain and tightening in my abdomen were dead give aways.

Where did you deliver?

A hospital in Eastern NC. I had both of them at the same hospital.

Drugs?

Holden: No, because I was young and stupid and didn't want my baby to get any drugs in his system.

Riley: Yes, because I was older and more tired and knew how much labor hurt. I had an epidural with him, but went through some pretty intense labor for several hours beforehand.

C-section?

No, for either.

Who delivered?

Holden: Dr. Sandy (Aka: Dr. Easley)

Riley: Dr. Stephenson

(And a bonus question) How long were you pregnant?

Holden: 39 weeks and 5 days. He was due on February 7th and born on February 5th.

Riley: 40 weeks and 1 day. He was due on May 12th (Mother's Day) and was born on May 13th.

Where Do I Start?

2009-08-31T13:29:00.001-04:00

So much has happened. Where do I start?

We got Holden moved into his apartment on the 23rd. I did OK until it was time to tell him goodbye. I hugged him and told him I loved him and then I quickly walked to my car as I felt the tears start to spill out of my eyes. Once I got in the car I really started crying and then noticed that Riley was crying too. He and I took turns crying for the next 20-30 minutes. Riley slept in Holden’s bed every night last week and every morning he would tell me how many more days before Holden would be home again.

Holden enjoyed his first week of school. He came home Friday because he had to work. I didn’t see him much, but I did get to see him some. We were able to watch a movie together Friday night. I teared up a little when he told me goodbye last night, but I never cried. The plan this week is to go see him and take him out to eat and then watch Halloween 2 together. We both like horror movies and it gives me an excuse to see him. He doesn’t have to work this weekend, so I don’t know if he’ll be coming home or not.

For the most part, I’ve done OK with him being gone. Most of the time, I don’t think about it. But, then, sometimes, it will hit me that he’s not coming home at night and I miss him. That’s the worst: when he’s not home at night when we go to bed.

Riley had a very good first week of school. He loves his teacher and she has done an awesome job with him. Last school year, which will hence forth be known as “the year of the bad sugars”, Riley said he didn’t like school. He made good grades (all As) and he loved kindergarten the year before. I didn’t really make much of it. I knew I had some reservations about his teacher. I didn’t really know how Riley felt about her until he started 2nd grade. Now, every day he’s come home and said how much he loves school. It seems he didn’t feel very comfortable with his teacher last year. I don’t think she really gave his D the attention it deserved and sometimes gave it the wrong attention. Now, I realize that it was probably stressing him out, thus the high sugars. And, to be honest, it makes me mad. I know it was an added responsibility for the teacher, but it upsets me that Riley picked up vibes from her that made him uncomfortable. But, that’s water under the bridge.

His teacher this year is wonderful. As I said before, she was my second grade teacher as well as Holden’s. I knew she was a great teacher, but didn’t know how she’d handle his D. So far, she has done a great job. I know Riley feels more comfortable with her and she told me on Thursday when I picked him up that she was already feeling more comfortable with it. On Friday she sent a note home which read: “Riley has had a good first week of second grade. He is a hard worker and a sweet boy. I am amazed at his ability to cope and admire you for the hard work that you put in to keep him healthy.” It brought tears to my eyes when I read it.

So far, his sugars have been OK. He had one day where he was in the 300s at lunch, but it came down just fine with insulin. The rest of the week went pretty well. His sugars weren’t perfect (when are they ever?). But, I was pleased with how they did for his first week of school. I sat down Saturday and tweaked his basals some to see if that will help a little. So far, knock on wood, he hasn’t had a single low at school. (Now, I’ve probably just jinxed it.) The start of school couldn’t have gone any better than it did.

My mom is still not doing well. She’s not quite as bad as she was before her surgery, but she’s not well either. She is going back to the doctor tomorrow to figure out what to do next. She is sick and tired of feeling sick and tired. Even though I see her every day, I miss my mom. I want her back like she used to be.

And, last but not least, public school started around here on August 25th. North Carolina has been cutting a lot of things out of the budget for this year. I heard horror stories of other counties around me laying off teachers and other state employees. Well, that cutting started happening around here the day before school started. At 3:40 PM on the Monday before school started, I got a call to be at central office for a mandatory meeting at 4:00. I was terrified. I just knew that I was going to be fired.

Turns out, instead of firing anyone, they just shuffled us around. Instead of being at my regular elementary school where I was last year, I was told that as of 8 AM the next day I would be reporting to another elementary school. I had no way to prepare. I didn’t know any of the children at the other school, nor did I know where anything was in the office. But, I was happy to still have a job.

I think they shuffled us all around to try and make someone quit. So far, no one has. I still feel like my job is up in the air. Right now, I still have one and that’s all that matters. I really like the school where I am now. It is less stressful than where I was last year. But, I still kind of miss the kids in the other school. I knew them. And, my student with diabetes got a pump over the summer and I was looking forward to working with her this year.

OK, that’s enough rambling for now. I will really try to update more often, so I don’t have to jumble everything together.

Back to School Stress

2009-08-10T09:02:00.003-04:00

I've got one about to start college and one going into 2nd grade. To say I'm getting a little stressed about it all would be an understatement. Riley going into 2nd would be OK, if I could just take diabetes out of the equation. But, unfortunately, I can't do that.

First, an update on my mom. She had a HIDA scan to test how well her gallbladder is functioning. It turns out it's not functioning at all. A result of 35% or more is considered normal. When we visited the surgeon last week we found out that Mom's results were virtually 0%. Well, that explains a lot.

Two months and thousands of dollars later we think we finally have an answer. She is having surgery on Thursday to have her gallbladder removed. Our hope is that will relieve her symptoms of fatigue also.

Holden is moving into his apartment on August 23rd. The apartment is furnished but I have yet to buy any linens or kitchen supplies. Holden and I are supposed to go shopping Saturday and get all that stuff. He is getting so excited. And, I'm really excited for him, but at the same time I know I'm going to miss him terribly.

Because my mom has been so sick I didn't get to go on the mission trip we had planned in July. Holden went and spent 3 nights away from home. I was so happy to see him when he got home. I really missed him. I know once he moves he'll be OK and eventually I will too. I've really done better with it than I thought I would. Of course, he hasn't moved in yet. Once he does I'll have to get back to you and let you know I how I feel then.

It's almost time for Riley to start back to school. His first day is August 21st. If you are the parent of a child with D I don't have to tell you the stress this causes. He has a new principle this year. So, my first task is to meet with him and see what his thoughts are on things. Riley goes to a private school, so they really don't have to do what I ask if they don't want. But, I've never had a problem in the past and I don't expect to have one now. I really, really like the new principle (He started in the middle of the school year last year.) and have found him to be very fair. I will also have to meet with his new teacher.

His teacher this year was my 2nd grade teacher. She was also Holden's second grade teacher. I know her well and totally trust that she will take good care of Riley. Still, that initial meeting is stressful for me. Like I said, he's in private school so they really don't have to accommodate me at all. Even though I've never had a problem that thought is always in the back of my mind.

The plan I have for him this year is different than in years past. I'm going to run it by you guys and see what you think. When Riley was in Kindergarten he checked his own sugars, but at that age the numbers really didn't mean anything to him. I trained his teacher what to do and how to give insulin with the pump. I made a notebook with as much information as I could cram in it. She knew what to do for highs and lows. I went to the cafeteria and got carb counts. I did the best I could to train her in how to take care of Riley.

She did an awesome job. Even though I had trained her and didn't require that she call me, she called me at almost every single sugar check. Of course, I didn't mind it at all. Riley's sugars that year were good for the most part.

That brings us to first grade. It was a whole different experience. By the time Riley was in first he had learned how to dose himself with the pump. His teacher was still responsible for looking at his sugars and counting carbs as well as supervising him while he put his numbers in the pump. She was also responsible for treating lows and making sure he rechecked his sugar in 15 minutes or so to make sure it had come up.

I trained her as best I could and gave her a notebook chocked full of information too. I told her to feel free to call me at any time with questions. She didn't call all that often. She pretty much handled things on her own. She tried to follow my instructions, but as you all know, there is really no way to teach proper diabetes care. You really have to live it to fully understand it.

For example, if I were to check Riley's sugar 1 hour after he ate and it was 95 I would know that if I didn't do anything then he would go low. I would take into account how much insulin he had on board and give him a snack and maybe even a temp basal decrease. Last year his teacher would check and think "OK, that's a good number" and let it go. Of course, in a little while Riley was low. Then, she'd treat with juice like she was told. But, the amount of insulin that was still on board was never considered. I touched on that with her, but like I said, unless you live it, you just can't really understand it.

Now, I'm not complaining about Riley's teacher. She did a good job with Riley. She just didn't do a great job. And, sorry, but when it comes to my child I want as close to "great" as you can get. Riley's sugars were horrible pretty much the whole school year. It wasn't until about the last 2 months of school that things finally clicked into place.

This year my plan is to take decision making power out of the hands of the teacher. I want Riley to call me after every sugar check and I will tell him what to do. He's old enough now that he can do what he needs to do while I talk to him on the phone. I will still train his teacher like I have before. She will still know what to do, especially for lows. And, she will still have to learn how to count carbs. But, as I said before, there is no way to teach how to handle insulin on board and exercise and sickness and stress. There are just too many variables. I refuse to have another school year like last year.

My hope is that administration will not fight me on it. I hope that they will see that it is what is best for Riley. Also, it really does take some of the strain off of the teacher.

I've talked with Riley about it and he says he's fine with calling me when he checks his sugars. On a good day in Kindergarten his sugar only got checked 2 times. On a good day in 2nd, it should be the same (once we get basals ironed out and except for PE days). Once we get things straight I'm OK with him checking at snack and lunch and then again if he has PE. Of course, there will be high days and there will be low days. I know there will be days when he'll have to call 5 or 6 times. To say that it doesn't add to my stress would be a lie. It's going to force me to think about it more at work than I'd like. But, I think it will be the best thing for Riley.

Last year there would be days where Riley would run in the 300s for hours. No one would call. The teacher would just have him give himself insulin. Or, there was one day when he was in the 400s at around 1 or 2. He got insulin and was never checked again before he went home. Of course, I called the teacher and told her how dangerous it was and that his site could have been bad and that he could have gotten really sick. The instructions in the book told her to call for any sugar over 350 and for Riley to recheck his sugar 1 hour after dosing for highs to make sure they are coming down. But, this wasn't done. There was also one day that she forgot to get Riley to dose for his snack. If he's calling me at every sugar check these things won't happen.

It's times like this that I really hate this disease. Most days I've made peace with it. But, when I start thinking of all the responsibilities Riley has to take on at such a young age it makes me mad. When I think of everyone else running off to PE while Riley has to stay back and call his mom it upsets me.

But, just like anything else with this disease you just gotta do what you gotta do. You have to take the lot you've been given and do the best you can with it. My goal is to keep Riley as stress free about his diabetes as I can while maintaining the best control possible. It's not as easy as it sounds.

Update on Mom

2009-08-03T08:00:00.000-04:00

There isn't much to update. My mom is just as bad if not worse than she was when I last posted.

She was admitted to the hospital last Friday. They ran bunches and bunches of blood tests. They sent her home on Sunday and said once the blood tests came back maybe we'd know something.

By Thursday all the results were back and all of her blood tests were perfectly normal. They have tested for just about everything under the sun. They've tested for all sorts of vitamin deficiencies. They've tested for celiac and liver disesease. They've tested for increased levels of things like copper and lead. They've tested her thyroid and adrenal glands twice.

Since the only pain she's having is right-sided pain which very much resembles gallbladder pain she had an MRI of her abdomen scheduled for this past Friday. (She's already had a gallbladder ultrasound and a CT of her abdomen and pelvic.)

On Thursday the GI doctor's nurse called and said the MRI had been cancelled because insurance would not pay for it. They said she needed a Hida scan first. A Hida scan is a more specific ultrasound of the gallbladder where they inject die and watch how it goes through the gallbladder and ducts. (She had one two years ago which was normal. She was having the pain off and on back then.)

Well, I got on the phone with my mom's primary doctor and explained we needed something done NOW. They were able to schedule the scan for the next day (Friday). When we showed up for the scan we were told it was cancelled because the person who does the scans called in sick. (Welcome to the middle of nowhere.) So, she is now scheduled for the scan this morning.

She is still weak and barely eating. She is unable to stay alone anymore. She and my dad have moved into my grandmother's house for now. At first they did it to see if maybe something in her house was making her sick. But, she's not getting any better. Now, she needs to be there because she needs someone with her all the time. Did I mention I have to return to work tomorrow?

I don't know what we're going to do. Her primary doctor mentioned sending her somewhere like the Mayo Clinic or somewhere like that.

Please continue to pray that an answer will be found soon. I want my mom back.

Pray for My Mom

2009-07-23T12:31:00.002-04:00

I don't have much time, but I just wanted to ask for those of you who pray to say a prayer for my mom.

She's been sick for 5 weeks now. Her main symptom is extreme fatigue. It's coupled with occasional right sided abdominal pain. She's been to a slew of specialists and had tons of blood tests done. So far, no one has come up with a cause for her symptoms.

Her weakness has progressed from only being able to leave the house for and hour or two at the time, to not being able to leave the house, to not really being able to leave the bed except to go to the bathroom and eat. It's not that she doesn't want to do anything. It's that she is physically unable to do anything.

The plan is to admit her to the hospital tomorrow and run more tests. Keep her in your prayers please. She can't stand being like this much longer.

Stop and Smell the Roses and All That Stuff

2009-07-17T11:19:00.000-04:00

As I write this I’m supposed to be cleaning my house. My goal is to have it completely clean and straight before we leave for our mission trip on Sunday. But, first, I felt compelled to blog.

It’s been a long time since I’ve written an actual post where diabetes was the main theme. That, in itself, is very telling. My blog, which started with good intentions of helping others, quickly turned into my outlet. I often came here to talk about my frustrations with this disease. I have come here many times just to vent and mourn and many of you have mourned right along with me since the very beginning.

It’s funny; even though I haven’t blogged in a while, I’m often thinking, “Oh, I need to blog about this” or I start writing a post in my head while driving down the road. Usually, that post never gets written.

As I was throwing the towels in the washing machine this morning “diabetes thoughts” were floating through my head. I guess they always are. I’ve just gotten used to it.

Riley has had diabetes for 3 years, 9 months, and 12 days (but whose counting?). Diabetes has implanted itself into our lives. It’s become our normal. I resisted it for so long. I would scream in my head, “This is not normal!!! I don’t want this to be my child’s life!!!” Now, I’ve come to realize that it is normal for us. I can dig my heels in and resist all I want, but it doesn’t change the fact that a bag of diabetes supplies go everywhere we go, or, the fact that I know the carb count of pretty much every food known to man.

I think a lot of it has just come with time. I don’t feel like diabetes has beaten me down, I just feel like I learned that there is no reason to get drug down the path kicking and screaming. I’m going down the path anyway; I might as well enjoy the walk. You know, stop and smell the roses and all that stuff.

Of course, I don’t take the credit myself. My strength and attitude come from a little 7 year old named Riley. He is wise beyond his years. He’s been through much more in his 7 years than most people do in a lifetime. And, yet, he has a passion for life like no one else. He never sees something and thinks, “Can I do that with my diabetes?” He just does what he does and deals with it as he goes. He’s taught me a lot about life and how to enjoy the moment and not get caught up in the rut in the road that diabetes can cause. I used to get stuck spinning my wheels in the rut. Now, I’ve learned to gun my engine, give it a little push, and move on to bigger and better things.

Don’t get me wrong, everything is not sugar-free bubble gum and rainbows. We both have our moments where we are frustrated with diabetes. Riley will declare that he hates diabetes from time to time. And, I will lock myself in the bathroom and cry on rare occasions. I did that Wednesday night after a rather brutal site change that involved Riley running and screaming and adamantly demanding that he would not let me insert his new site. He even debated about going back to injections for a while. Of course, he was high at the time. He was high because I forgot to bolus him for his supper. About an hour afterwards I remembered and corrected the 300+ high. At sight change time he was in the 400s. He always does worse when he’s high at a site change. And, it was all my fault. So, I held him and talked to him and then I went into the bathroom and cried. Then, I dried my tears and went on with life.

I think that’s what has finally clicked with me that last few months. While things like the forgotten-bolus-high-sugar-screaming-site-change are bad, they are only a small part of our lives. Prior to that site change we had spent the day at the ocean. It was a perfect day. It was in the mid-80s with a breeze that kept the temperature just right. The water, which is often frigid, was the perfect temperature also.

We drove down there, set up our chairs, and spent the entire day just hanging out on the beach. It was just me, Michael, Holden, and Riley. It’s a rare treat to have just the four of us together for any extended period of time like that. I spent the day alternating between reading a book, chatting with Michael, and spending time with my kids.

Riley and I stood in the edge of the surf jumping the waves and then searched for sand fiddlers. Holden and I waded out a little further and he actually got me on a boogie board. It took me a while to get the hang of riding a wave into shore, but I finally did. And, then, a huge wave engulfed me on the way in and I did a nose dive into the sand. I ended up on the beach looking like a beached whale. When I opened my eyes Holden was standing over me with a mixture of concern and amusement on his face. I was fine, of course, and enjoyed every minute of that time out in the ocean with Holden.

One time as I sat and read I glanced up at Riley jumping in the surf. Further out, Michael and Holden were on boogie boards. It’s one of those moments where you realize how blessed you are. Life couldn’t have been more perfect at that moment. Just about that time, Riley came up to dry off a bit and I had him check his sugar. It was 106 and I asked him if he wanted a snack. He was having too much fun in the ocean to stop and snack so I decreased his basal and let him go on his way.

When we left we stopped and got something to eat. That’s where the forgotten bolus comes into the perfect picture. A while ago I would have let it ruin my day. I would sit and beat myself up for letting it happen. I would have let it trump all the fun we’d had that day.

But, instead, I went and cried and got over it. As I sat in the bathroom drying my tears, I heard Riley talking enthusiastically about his Star Wars game. He was over it. I took my cue from him and got over it too. It happened. Move on.

It’s taken me a while to figure out that when Riley looks back on these times he won’t remember the forgotten bolus and the site change. Instead, he’ll remember a day of sun and fun on the beach with his family. He’ll remember spending a good portion of the day building a huge sand castle with his big brother. He’ll remember seeing dolphins jumping up out of the ocean and the crab leg he found and used to adorn the top of his sand castle like a flag.

I still hope and pray for a cure. When my dad mentioned a news piece he had seen on TV about how they had found a cure for Type 1 diabetes I just nodded and said “That’s great.” I hope beyond all hope that it will happen one day. But, I’ve realized that we’ve got to go on with life in the meantime. And, right now, that life involves sugar checks and site changes. It involves highs and lows. It even involves frustration and tears. But, it involves way more happiness and smiles. I don’t know why I couldn’t see that before.

Graduation Pics and More

2009-07-06T09:30:00.000-04:00

I'm finally getting around to posting some graduation pictures. I've also put up some pictures of Riley from baseball. The season at the ballpark has ended but Riley found out there was a rec. league too and wanted to play that. So, we'll start up with that again this month. In addition, he starts swimming lessons tomorrow. I may have a month off from work, but I'll be busy, busy, busy.

Hanging with the guys

Holden and his best friend, Daniel. Daniel was Valedictorian and mentioned Holden in his speech for being such a good friend to him throughout the years. It made me cry.

Walking in. When Pomp and Circumstance started is when my tears started.

He received a scholarship (yay!!!!)

Those who received other scholarships were also recognized.

At one point a song started playing ("It Won't Be Like This For Long" by Darius Rucker). All of the kids got a flower and came and brought it to their mom. I cried off and on throughout the service, but I completely lost it when Holden brought me the flower.

Receiving his diploma.

It won't be too many years before Riley will be wearing this hat for real. (sniff, sniff)

What's Up?

2009-06-24T09:16:00.002-04:00

** Holden has graduated and been oriented to his new college. It's the same college that Michael and I both attended. We went to orientation with him and it felt like going home. It was strange. When I walked into the English building I turned to Michael and said it brought back memories, not because of the sites, but the smell. It smelled the same and it brought back a lot of memories. Anyway, Holden is now registered for his classes and ready to start school in the fall. He moves into his apartment on August 23rd and his first day of classes is August 25th.

** Riley had an endo appointment on the 18th. His A1C was down to 7.4 which makes me happy, but not elated. I would like to have it a little closer to 7, but I'll take it. We sat and talked with Dr. Morris for a long time. She is closing her practice at the end of the month. We discussed our options as far as another endo and I made a decsion. I'll make an appointment with them and see how it goes. I know there is no way we will love them like we love Dr. Morris.

** Diabetes doesn't get as much of my attention as it used to. That's not to say that it doesn't get any attention. I guess maybe it's getting the proper amount of attention. I don't think about it as much, only when I have to think about it. Like, at Riley's end of the year party at school when they started passing out little juice jugs that were nothing but pure sugar. When Riley turned to me and said "Can I have one?" I had to tell him no and gave him a 2g juice pouch instead. He took it and went on his way while a group of mothers all lamented how sorry they felt for him. Or, the time at the family reunion when he had eaten a piece of cake and a piece of chocolate but when I'm standing at the dessert table trying to pick something out for myself he asks if he can have another piece of cake I say no. The woman standing next to me said, "Oh, poor thing. I feel so sorry for him." Why? Because he didn't eat the whole dessert table like you? I'm only going to have one piece of cake too. Or, last night when I changed his needle and he howled like a banshee. I'm not sure exactly what a banshee sounds like, but I'm pretty sure Riley's screams last night were pretty close. So, yeah, it's still there. It still causes my emotions to run the gamut some times, but my emotions aren't as extreme as they used to be.

** My mom just got out of the hospital yesterday. She went to the emergency room Saturday night having chest pressure. When they hooked her up to the heart monitor he heart rate was running in the 40s and low 50s. They admitted her to the hospital to run tests, but they still don't really know what's wrong. She's going to wear a monitor at home and also have some more tests run. I just talked to her on the phone. Her biggest problem now is that she is worn out. I guess having a low heart rate for so long will cause you to be fatigued. The problem is all of her tests and follow up appointments are scheduled for next month. That's too far away in my opinion. If she doesn't start feeling better soon I'm going to call and see what I can get done earlier.

** My last day of work for the summer is June 29th. Then, I'll have 5 weeks off before I have to start back. I can't wait!

Complications

2009-06-09T11:06:00.001-04:00

When I dropped Riley off at my mom’s this morning she told me that she had gotten a call that one of my relatives with Type 2 diabetes was in the hospital and was going to have his foot amputated today. This same relative had his other foot removed a few years ago, but due to some problems ended up with a below the knee amputation a little while later. He now walks with the aide of a cane and prosthesis.

Anytime I hear of someone with diabetes losing a limb a small knot forms in the pit of my stomach. I pray every day that Riley will be spared of complications and that he will continue on the same responsible path on which he has started.

On the day Riley was diagnosed there was a long one hour ride to the doctor’s office. I’m a nurse and the only people with diabetes I had ever dealt with had Type 2 diabetes. And, to be honest, 9 out 10 of them had some form of complication, be it blindness, amputations, or kidney disease. All the way to the doctor that is all I could picture for my little boy. I could only imagine what complications would face him since he was diagnosed at such an early age.

I’ve learned a lot over the past 3 ½ years. I’ve “met” many, many people who have lived with Type 1 diabetes for 20+ years with nary a complication. And, most of them were diagnosed when insulin therapy was primitive to say the least. There was no carb counting and there were no blood sugar machines. And, yet, they stand, on their own two feet, complication-free. They’ve lived long, happy lives. Many of them are not only parents, but grandparents as well.

Still, hearing of a PWD developing complication brings up those fears I’ve tucked way back in the back of my mind. And, it makes me long for a cure more than ever before.

This Is It

2009-06-05T15:03:00.002-04:00

Riley's last day of school was today. He is now officially a second-grader. My mom took him out for ice cream to celebrate. Luckily, his sugar cooperated and was 81 at the time.

I'm getting ready to leave work. Once I get home I will change and head off to Holden's baccalaureate service. Graduation is at 10 in the morning.

I've cried a lot this week. I tear up at the drop of a hat. I know people have looked at me strangely, because I can just be standing there and a thought will hit me and I'll get tears in my eyes.

I'm sure there will be more tears tonight and tomorrow. I know he's going to be OK. And, I'm excited for all he has left to experience. But, this is one of those milestones that really get to you. Bittersweet is really the only way to describe it.

Once I get through tonight and tomorrow I'll be OK until it gets closer to him moving away to college. I'll post some graduation pictures when I get a chance.

Oops, I Did Again

2009-05-29T09:00:00.000-04:00

I was reading Jill's blog and she was talking about her daughter forgetting to dose herself for lunch. In the comments some people shared some of their similar experiences.

Do you have a story you'd like to share about when you totally screwed up when it came to D? Come on, none of us are perfect and maybe sharing your story will make someone else feel better about themselves.

My biggest oops happened on Riley's very first day of Kindergarten. I think because it was his very first day out of my sight with someone else caring for him it made it stick out in my mind even more.

I was sooooo upset about Riley starting school that I had made myself sick (literally). I was so nervous that morning. I got him to eat breakfast and somewhere in all the caos I forgot to bolus for it. I didn't even realize I had done it until Holden called me at snack and Riley was in the 300s. When I asked how much insulin he had on board, Holden said "none". (snack was about 2 hours after breakfast) That's when I realized that I had forgotten to bolus for his breakfast.

He got insulin then and went on to have a fine first day of Kindergarten, but I felt like such a dunce. I will never forget doing that.

That's my big story. There are plenty of other oops over the last 3 1/2 years but that's the one that sticks out in my mind.

What's your D-oops?

Odds and Ends

2009-05-27T09:59:00.002-04:00

** Riley’s sugars have been pretty good lately. He’s had a few lows, but not low-lows. I did decrease one of his basals last night because he keeps going low (but not low-low) every day between breakfast and lunch. I had already adjusted his carb coverage a little, but that didn’t seem to help. He did have a real-low yesterday in between breakfast and lunch; he was 59. It’s strange to decrease basals. It seems to go against everything. His insulin needs should increase, not decrease. I know that since it is summer and he’s more active that’s probably what it is. Still, it’s strange to me to ever decrease anything.

** Holden’s last full day of high school was yesterday. He’s going half a day today, and then he has Baccalaureate practice. Tomorrow he has one exam and then he will be done. Last night before I went to bed he said, “You know tomorrow will be the last day I take Riley to school in the morning.” There goes another “last”.

** A couple of weeks ago I purchased Wii Fit. Riley got a Wii for Christmas and ever since he got it I’ve wanted Wii Fit. But, because of the price, I held off. A couple of weeks ago I decided I was tired of being tired all the time and wanted to do something about it. I also knew it was important to do something for myself. So, I bought Wii Fit and have been using it pretty much every day since. Yesterday was my 11th day having it. I have lost a little over 2 pounds since starting it. I have cut down on what I eat and have cut out sodas completely. While I would love to lose about 15 pounds, that’s not really my ultimate goal. My goal is to feel better and to get in shape.

** Michael just called me and asked if I wanted to help him with a pool liner replacement. For about ten years now he’s been working summers helping someone who owns a pool and spa shop put in pools and things like that. He always got paid hourly wages to help him. Last year the owner decided he was too old to help anymore and turned the pool installation over to Michael. So, in addition to working for him Michael had a little side job putting up pools (above ground) and replacing liners. He not only gets referrals from the owner but from another local pool shop as well. It’s really hard work, but it’s really good money. He has someone else to help put up pools. I can’t help him with that because I’m really not physically capable of all the digging, lifting, and pulling it involves. So, he splits the money for that. But, last year I helped him with a liner replacement. It was really hard and really, really HOT, but we did it. And, that way we get to keep all the money and he doesn’t have to split it with anyone else. His extra summer job paid for our kids to go to private school last year. So, this Saturday I will spend my day in the bottom of a hot, hot pool. I will have to keep in my mind why we’re doing it so I can get through it.

** When Michael called me he said we could either do it this Saturday or next one if that was better. I reminded him that Holden graduates next Saturday so we’d have to do it this Saturday. Saying that made me realize how close it really is. My baby graduates from high school next week. He got his annual yesterday and I sat and cried for a good 30 minutes reading through the senior pages. At the beginning of the year the parents are given the opportunity to place a senior ad in the annual. You can put whatever you want on the page. We got one. We put a lot of pictures of Holden up there. There were pictures from all stages of his life. And each of us (me, my parents, Riley, and Michael) wrote a little note to Holden. I don’t care how many times I looked at the page yesterday every time I read it my eyes filled up with tears. The pictures of a young Holden and a very young-looking me where the ones that brought the tears on the most. It seems like only yesterday he was Riley’s age.

** I know I keep harping on Holden's graduation, but just bare with me for a little longer. Right now it's on my mind even more than diabetes. And, that's saying something. It's really a strange place to be. On one hand, I'm happy for him. He gets to go off to college and experience life on his own. I'm even a little excited for him. On the other hand, I want to keep him just like he is. I don't want him to graduate. I don't want him to go away. I don't want to see his high school end. I known that once you're out of high school life is never the same again. That's not necessarily a bad thing. But, change is always hard and the thought that my baby is old enough to graduate from high school just blows me away. Once he graduates it will only be a few weeks before he's off to college. It will be a new beginning for him. This line keeps playing over and over in my head: "Every new beginning comes from some other beginning's end."

One of Those Days

2009-05-25T10:38:00.005-04:00

Riley had a ballgame yesterday afternoon. He had lunch just before the game. When I checked his sugar right before the game it was on the higher end of the spectrum but I didn’t give any insulin because I knew he had plenty of insulin on board and was getting ready to run around in the hot, hot sun.

After the game there were the usual snacks. This time it was Doritos. They are not too bad but they’re not too great either. Really, I’d rather him have the cupcake from the week before. Cheesy snacks sometimes affect his sugar in a weird way.

Anyway, Riley started the usual “Can I have it now? Can I have it now?” To which I gave my usual, “Let’s wait until we get in the car and check your sugar.”

We got in the car and I handed Riley his machine. He started checking as we drove away. I heard the beep of his machine. In a whiny voice he said, “It’s 425.”

“Can I still have my snack?”

It’s times like these that I want to crawl in a corner somewhere and throw a blanket over my head and hide away for a little while. “No, baby, you need to wait for your sugar to come down a little bit, OK?”

“Why, Mom? It’s not fair. I hate diabetes!” Then, he started to cry.

I reminded him of the week before when he was on the lower end of the spectrum and he got to eat treat after treat. That was no comfort to him. It was probably a dumb thing to say, but I just wanted to do something, anything to make him feel better.

Accepting that your child is hurting and there is absolutely nothing you can do about it is one of the most difficult things in the world to handle. I wanted to cry too, but for Riley’s sake I held it in.

It was time for a site change anyway, so when we got home I started gathering the supplies. Riley started up. “I don’t want to change my needle!! When do I get to eat my snack?”

I disconnected him from the pump. He had a few minutes to run around free while I drew up insulin and primed the tubing.

When I pushed the side of the inserter and the needle pierced his skin he seemed to be fine. He kept carrying on a conversation with Michael like nothing had happened. I was relieved. When he’s high at a site change is when it seems to bother him the most.

I decreased his pump 50% for 3.5 hours (like I always do after site changes to try and prevent lows). I also did not fill the canula (another trick to try to prevent lows). I dialed in the amount of insulin he needed for his high sugar (minus a little, to try to prevent lows).

When I pushed “OK” and the insulin injected Riley let out a howling scream. His eyes filled with tears and he began to bawl. I hugged him and tried to comfort him. All the while he was crying on my shoulder. After a while the crying stopped. But, every few seconds he’d say “Ow, ow, ow” and tense up. Then, he’d cry a little more.

This went on for several minutes. Finally, it stopped hurting.

Right after the change we needed to leave to go somewhere. Riley started to complain. He didn’t want to go anywhere because it hurt to sit down after a needle change. We told him it was a short ride, just over a mile down the road, and he got in the car and did fine after that.

An hour after his needle change his sugar was 217. He had dropped 208 points in one hour (even after all the things I did to try and prevent a low). So, he got to eat his Doritos. He proceeded to go low anyway.

Then, high, then low, then high…..You get the picture.

During church yesterday morning his sugar was dropping so I decreased his basal, I decreased it a little too much I guess because he ended up high after that. At the end of the day his sugar graph looked more like something you would see on a heart monitor.

I hate days like that. I hate that I can’t do anything to take away the pain. I hate that I help cause that pain. I hate that my full-time job is being a pancreas. It’s the most important job of my life, yet I didn’t go to school to do it. There’s no such thing as a degree in pancreatology. It’s all on the job training. And, when you screw up, your child pays for it.

Field Day Update and Sappy Post

2009-05-22T13:44:00.002-04:00

Field day was a success! I know I ended yesterday’s post on a downer note, but really everything turned out OK.

I misunderstood what the teacher said yesterday about his lows. Instead of the 60s, his sugars were 74 and then 76, which is not really low, kind of. We normally treat low-but- not- really- low sugars (only those with D understand what that is) with a few fruit gushers. That’s exactly what the teacher did, but with very little results. So, I told her to go ahead and give him a juice box to go on and get it up.

It worked wonderfully. I don’t remember the exact numbers, but there were not any other lows and no highs at all. The only complaint Riley had was that after drinking the juice his teacher made him sit in the classroom for 15 minutes so he could re-check his sugar before going out to field day. I told him that she did the right thing because if his sugar was already low he didn’t need to be running around until it came up. I think he understood, but didn’t like having to wait when no one else did.

At the end of the day they treated all of the kids with icy pops. His teacher didn’t know how many carbs they were and she wanted Riley to be able to participate. So, she found out where they were purchased and called the store and had them look at the box for her and tell her the carb count.

They were only 4g and he was able to have one along with the class. Riley was thrilled. I am so pleased that the teacher thought to do that for him. It would have just been easier to tell him he couldn’t have one. I’m not sure she even realizes how significant that one gesture is.

She called me this morning to let me know that Riley said he felt low and when he checked it was 145. But, the machine didn’t beep like it usually does so she had him check it again. The next two checks were 129 and 101. She called because she didn’t know if she should trust the machine since he took the sugars so close together and they were so different. I told her that there was a margin of error with the machines. I told her that since it was only an hour and a half after breakfast he still had plenty of insulin floating around and that even if his sugar was 145 he probably still needed some gushers to keep him from dropping. I told her to give him 4 gushers (about 8g carbs).

An hour later she called back and said he was now 174 but the machine still didn’t beep when he checked his sugar. I told her that since it went up with the gushers then I was going to trust that it was working correctly and that I felt she could trust it unless his lunch sugar was just totally off the wall. We have to have a sort of blind trust with these meters anyway.

------------------------------------------------------------

Now, I want to talk a little bit about my other baby.

We attended Holden’s last athletic banquet on Monday. Then, we attended his last academic banquet last night. Everything with him over the next few weeks is a last.

He got a few awards last night. He got an AP literature award, a public speaking award, a Presidential scholar award, and a Spanish award. He also received a scholarship from the Parent Teacher Organization in the amount of $500. I’m really excited about that one. College is expensive and living away from home is going to be expensive also.

Holden only has (counting today) 3 more days of classes. Due to his grades he’s exempt from all of his exams except one, Calculus (math has never been his strong suit). He takes that next Thursday morning and then he will be done with his high school career.

Holden attends a small private school. He’s been there since Pre-school. I’ve known a lot of the kids in his class most of their life. The fact that Holden is graduating is sad, but the fact that I won’t be seeing most of the kids again is sad too. I’m going to miss them too.

Holden’s best friend’s name is Daniel. I can’t remember when Daniel started school with Holden but I’m thinking around the 4th grade or so. Anyway, they’ve known each other a long time. And, all that time they’ve been best friends. Daniel is a great kid and when I say that I really mean it. If I could handpick Holden’s best friend, Daniel would be who I would chose. He is smart and talented. He’s attending college next year on a partial athletic scholarship to play baseball. He will either be the valedictorian or salutatorian at graduation (pending final grades).

He and Holden are alike in so many ways. I am so glad they found each other. I don’t know how to put this the right way, but there are a lot of “wild” kids in Holden’s class. Many of these kids are the way they are because their parents allow them to be. Daniel’s parents have always held him to a higher standard. And, Daniel has always tried to achieve that standard.

Holden’s a good kid. Don’t get me wrong, he’s not perfect. I’m not one of those parents that say “My kid wouldn’t do that.” I believe anyone is capable of anything. None of us are immune from wrong-doing. It is human nature. But, Holden tries to do what is right. I think he has a good set of morals and tries his best to stick to them. Daniel is the same way and I think throughout the years he’s been an encourager to Holden. When everyone else was at the wild parties Holden wasn’t the only one not there, Daniel wasn’t there either.

At the academic banquet last night Holden and Daniel kept making faces at each other across the room. I looked at Holden and said, “I wish you two were going to the same college.” He nodded his head and said, “Me too.”

Daniel will be attending college about 4-5 hours away from Holden. I really hope that they keep in touch. It’s possible. I’m still in contact with my best friend from high school and I graduated 17 years ago. She was a couple hours away from me at college, but we spent a few weekends here and there hanging out together. We drifted apart for a few years, but like true friends we put aside our differences and now we email each other on a regular basis. I even saw her this Christmas when she came back to visit her mom.

“I’m going to try and spend a lot of time with Dan this summer before he leaves.” Holden said this to me a few days ago.

I know how he’s feeling. He’s trying to grasp on to whatever time is left, trying not to let it slip through his hands, but knowing that it’s going to.

That’s how I’m feeling now. I want to slow down time. I want to relish every single minute I have with Holden. I want the summer to last forever.

But, I know that instead of slowing down, time will seem to speed up and the summer will fly by. The next couple of weeks are going to be tough. My eyes tear up at the drop of a hat now. All it takes is a snapshot of Holden when he was younger, or a line in a song, or even two best friends making faces at each other across the room and I have to hold my breath to keep my composure. Sometimes that doesn’t work.

So, be warned, you can look forward to some more sappy posts about Holden over the next few weeks.

Field Day

2009-05-21T09:02:00.002-04:00

Riley has a field day today. I’m trying not to think about it too much, but I can’t really help it. I know in my head that stressing over it and worrying about it won’t help any at all. But, I can’t seem to help myself.

I’ve debated over and over what I should do with his basals today. I finally decided that I would do nothing; mainly, because I didn’t know what else to do.

I don’t know how active he’ll be. I don’t know what time the games are, all I know is that it’s an all day event. So, there’s really not much I can do but pray and wait and see what happens.

I debated about switching him from his weekday basal to his weekend. His weekend basal is lower. For some reason when he’s at school he needs an increased basal from the hours of 11-2. He doesn’t need that on the weekends. Then, I decided that didn’t really make any sense. He’s eating lunch and snack at the same time, so he probably still needs the increase at that time.

But, the last two mornings he’s gone low, not too terribly low, but low, between breakfast and lunch. So, this morning I decreased his breakfast bolus just a smidge to see if that will help. Two days of 60-70s at those times is not enough for me to want to change basals, especially since he was high all day on Monday with no low in site.

So, I sit and wait. I know he’ll be OK. I sent his teacher a note reminding her to take juice out with her and to let her know that Riley may need to check more often just to see where he is. I just hope a stupid low doesn’t ruin his fun.

I long for a day when Riley can just be, and not have to worry about diabetes interrupting his life.

(**edit: At 9:50 I got a call from Riley's teacher. They were getting ready to go out for field day and Riley's sugar was 64. She treated and he only came up to 69. I told her to give him another juice box. In case I haven't said it lately: I HATE DIABETES!!!!)

Different, Yet the Same

2009-05-19T15:19:00.002-04:00

The very first day of baseball practice Michael and I were sitting in the bleachers. He leaned over and tapped me on the shoulder and said, “Hey, I think that girl was wearing a pump. She just took something off and handed it to her dad.”

“It was probably just a cell phone,” I said.

“No, I think I saw tubing.” He whispered like he was telling me a secret.

I didn’t think much of it. I mean, really? What are the odds that in our small little town that Riley would get on a team with another kid with Type 1 diabetes?

About half way through the practice I heard her dad say, “Are you OK?” And then I saw him hand her a piece of candy.

Hmmmmm, maybe it was a pump.

After practice I went over to get Riley. Michael went to talk to the coach to let him know about Riley’s diabetes and to let him know that if Riley says he feels low that he has to come out of the game immediately and cannot wait for the inning to be over.

I heard the coach say, “J has it too.”

I turned. The little girl’s dad said, “Yeah, she wears a pump.”

So, somehow, Riley ended up on a team with another little girl with diabetes. She looks to be about 8 or so. I don’t know how long she’s had D, but by the T-shirts her mom wears I’m thinking it’s been a while. Pretty much every time I see her mom she’s wearing a diabetes walk T-shirt, a different one every time.

We met J about 3 or 4 weeks ago. Since then, her mom and I have never spoken of diabetes. I’ve felt no need to bring it up. I know that she knows what it’s like. She knows that I know too.

J wears a Minimed pump, Riley, an Animas. But, the differences don’t end there. I found out through my blog that everyone with diabetes is different and everyone does things differently.

I’ve never seen J check her sugar in the dugout. Riley’s had to stick his little finger through the fence a few times for some checks. This is mainly because baseball is new to us. Checking him is the only way we know what to do with his basals. The first few games his sugars would soar, but the last couple of games they’ve been OK. I’m thinking maybe he was nervous the first few games and that caused the highs? Who knows? But, my point is we have to check to see what we need to do. J is a couple of years older than Riley; her parents probably figured all of this out a while back.

J wears her pump in a clip on her waist. When it’s time to start playing she disconnects. Riley wears his pump in an inner pocket and wears it throughout the whole game. (After seeing J a few times Riley decided that he wanted to wear his pump like she wore hers. His has always been neatly concealed in a pocket. He wore it in a clip on his waist for a couple of days until he decided it just wasn’t for him and started wearing it in his pockets again.)

J drinks sips of Gatorade throughout the game. Riley settles for Powerade Zero (0g carbs) because he doesn’t need the extra sugar.

But, with all those differences they are still very much alike.

Sometimes parents bring snacks for after the game. After the last game a mother passed out pre-packaged baseball cupcakes. Michael went over and asked to look at the box. He turned it over to see the carb content. He looked at me and said, “32 grams.”

“32 grams, really? That’s a lot.”

Riley said, “Can I have it now?

I told him to wait until he got in the car and we checked his sugar first and then maybe because of the amount of carbs he could have half of it.

I turned just in time to see J lifting up the box of cupcakes and peeking at the bottom. She turned to her dad and said, “32”.

He said, “Wow, that’s a lot of carbs for a snack.”

“My thoughts, exactly, “I said. “I’m thinking maybe he can have half.”

J’s mom said, “Yeah, maybe half of one.”

We went to the car and got in. I don’t remember what Riley’s sugar was, but when he looked at me and said, “Do I have to eat half of it?” I told him he could have the whole thing.

A huge grin spread over his face and he started devouring the cupcake.

As we pulled out of the parking lot, I glanced over and saw J devouring her cupcake with the same grin on her face.

They may do things differently when it comes to their diabetes, but deep down they are really the same. They’re kids.

Memory Mondays: January 23, 2006

2009-05-18T14:34:00.002-04:00

Another one from the archives:

The Storm

It's hard to remember when the waves weren't crashing around me. I know it hasn't been that long ago, but it seems like forever.

I was out on the water. It was warm and the slight breeze kept it from getting too hot. That was when every day seemed almost perfect. The clear, blue water. The slight taste of salt in the air. The feel of the sun on my face. The beautiful bright blue sky. A slight ripple would come along every now and then and rock the boat gently from side to side, but it didn't really disrupt anything. I'd jump off the boat and immerse myself in the water. I would glide along. The water was so calm and serene. Every so often the sun would go behind a cloud only to emerge again a little later.

Then one day, it all changed. Suddenly the sky turned a sickly shade of gray and rain began to pelt my face. The thunder rolled and the waves started to crash and spill into the boat. One minute it was calm and the next minute I felt as if the boat was about to capsize.

I never saw it coming.

The storm has thrown me out of the boat a few times. I always thought I was a strong swimmer, but now I struggle just to stay afloat. I strain my neck and stick my chin out trying to keep my head above water. Still, I have gone under a few times. Yet, I always claw my way up to the top and somehow manage to drag myself back into the boat, exhausted, broken, and crying.

I've learned how to go on with life in the midst of the storm. The waves continue to crash around me and I've become accustomed to the rocking of the boat. I've learned to keep my head up and brace myself against the wind and the rain. I'm not getting knocked out of the boat as much anymore.

Still, I dream of the day when the storm will stop raging and the sun will come out in all its splendor. I know in my heart that day will come. There will be a day when the storm will be obliterated and there will be nothing but blue skies and calm waters.

Seven

2009-05-13T08:21:00.005-04:00

My baby is seven years old today. I can't believe my baby boy is seven.

We celebrated a little already on Saturday. We went to a Japanese steakhouse, bowling, and then to Cold Stone. (All of which Riley chose himself.)

We also bought part of his birthday present. Ever since the demise of Nemo Michael and I have been talking about getting Riley another fish. We let Riley pick out what he wanted this time. He chose Glo-fish.

These particular fish need an aquarium so we had to buy one of those and set it up and let it run a couple of days. Today we will go get the fish. Riley is so excited he can't stand it.

Then, it's off to my mom's for a birthday supper of spaghetti (Riley's choice again). I'm also taking cupcakes out to school this afternoon for his class.

Happy birthday, little man. I love you with all of my heart and am so glad God picked me to be your mom.

Jaded

2009-05-12T09:19:00.003-04:00

Early on in Riley’s diagnosis I was full of hope for a cure because I had to be. I couldn’t bare the thought that Riley would have diabetes forever. My coping mechanism at the time was to believe with all my heart that there would be a cure. It was a comfort to think that one day he wouldn’t be dependant upon insulin for survival. Believing that was the key to my survival at the time.

Now, my coping mechanism has changed. Three and a half years later I still hope for a cure. I will always hope for one. But, that hope is different somehow. There is no passion behind it. My coping mechanism now is to believe that Riley will always have diabetes because if I allow myself to think otherwise I become disheartened. I can’t spend my time longing for a day that may never come.

I used to think about Riley going to college and believe that diabetes would no longer be a factor because he would be cured. Now, I think about him going off to college and I see him being a strong independent young man, a young man with the same hopes and dreams as everyone else. But, a young man with an insulin pump tethered to his side, a young man who can juggle classes and diabetes all at the same time.

I read plenty of blogs by moms whose children have been diagnosed in the last year or so. I see so much of my old self in their posts. Back in the day just about all of my time and energy was focused on diabetes. All of my hope was wrapped up in a cure. I wanted to make sure that I crossed every t and dotted every i when it came to diabetes. I had to be perfect.

Merriam-Webster defines jaded as: (a) fatigued by overwork or (b) made dull, apathetic, or cynical by experience. After reading that definition I think right next to it you could put a picture of me holding a meter and a bottle of insulin.

I'm not proud of it, but I've become jaded by diabetes. Fatigued by overwork? Check. Dull and cynical by experience? Check again. ( I haven't reached apathy though.)

I realized a long time ago that it is just not possible to be perfect when it comes to this disease. Over the years I've found that you can pour every ounce of your time and energy into diabetes and it still is what it is. You may control it for a time, but eventually it will come right back and bite you in the butt. Hard.

I've learned that it doesn't get easier. I'm not saying that to discourage anyone. Emotionally it's easier for me. But, the care of this disease is harder. Riley's growing older. He's hitting growth spurts at alarming speeds. Most of the time I just cannot keep up and he ends up high far too often. He's most certainly out of his honeymoon. It used to be that if I screwed up his pancreas would help out a little. Now, it's all on me.

So, yes I am cynical. You can only be bitten so many times before you stop putting your butt in the cage to begin with.

I’ve had to come to grips with the fact that Riley may have diabetes forever. I’ve had to learn to have peace with that. For the sake of my sanity I have to live life like there will never be a cure. Yet, I still long for the day when someone proves me wrong.

They Come in Eights

2009-05-07T10:40:00.002-04:00

I was tagged by Jill so here it goes....

Eight things I’m looking forward to….

Retirement
The end of school for my kids.
My last day of work for the summer.
Having grandkids
Seeing Holden and Riley grow into adults
Summer mission trip
Being able to get a new pump (we want the remote)
A cure for Type 1 diabetes

Eight things I did yesterday…

Worked
Ate lunch
Went to the grocery store
Logged blood sugars
Made basal adjustments
Helped Riley with his homework
Cooked supper
Read a book

Eight things I wish I could do…

Cure diabetes
Quit work
Become a millionaire
Sing well
Pay for all of Holden’s college
Take Riley’s diabetes as my own
Take time for myself without feeling guilty
Keep my house clean

Eight shows I watch…

CSI
House
The Mentalist
Property Virgins
Flip This House
Criminal Minds
Dr. Phil
House Hunters

Eight people I want to read 8 things about…

Sandra ( A Shot in the Dark)
Carey ( Up high...Down low)
Shannon (Mom Wants A Diabetes Cure)
Chris (rub eyes when needed)
Vivian (DanielDoo)
Kelly (Chasing Numbers)
Scott (Scott's Diabetes Journal)
Joanne (Death of a Pancreas)

As far as the shows go there really aren’t any shows that I make a special effort to watch every week. The ones I listed are the ones I am most likely to stop and watch as I’m flipping through the channels.

And, for the eight people I tagged, there are a few (and you know who you are) that haven’t posted in a while. I’m trying to get them to post again.

Now What?

2009-05-04T10:56:00.000-04:00

Riley had a scheduled endo appointment on April 17th. A few days before the appointment I got a voicemail from the receptionist saying that the doctor had to cancel the appointment due to health reasons. She said she would call back in 2 weeks and reschedule.

Friday was 2 weeks from when his appointment was scheduled. I called and left a message wanting to reschedule the appointment. I got a voicemail from Dr. Morris yesterday.

She called to tell me that she was in surgery 2 weeks ago and that she had a follow up appointment on Tuesday (tomorrow) and after her appointment she would know more what her schedule was and would call to schedule an appointment. Then, she dropped the bomb.

I’m not sure how old Dr. M is but she’s on the older end of the spectrum. I’ve always wondered what we would do when she retired. I’ve always secretly hoped that Riley would be cured before that happened.

Anyway, she said she wanted to let me know something before I heard it somewhere else. She will be closing her practice. She said her health is good right now and she’ll probably keep it open for another 2 months.

I was devastated. I love, love, love Dr. M. I think she was heaven-sent. For those who don’t know: When Riley was first diagnosed he was sent to the local pediatric endo that covered the hospital where he was diagnosed. We live in Eastern NC and this doctor is the only ped endo in Eastern NC. To say he has a big practice is putting it mildly. Anyway, I liked him just fine but since he was so adamantly against the pump for Riley and I was so gung-ho about it, he wasn’t really a good fit for us.

I let him know that I would prefer to see someone else. His PA said she would check around for doctors that specialize in small children on the pump (Riley was 3 at the time) and call back. Of course, I took matters into my own hands and started searching on the internet.

Almost immediately I found Dr. M. I read a (positive) message someone had left on insulinpumpers.org about her and small kids on the pump. I thought I’d give her a try. I called her office and left a message. Later that afternoon I got a voicemail. Dr. M, herself not her receptionist (impressive), had called and told me she had an appointment available in a couple of weeks. I immediately called back to confirm the appointment. The next day I had a voicemail from the PA at the previous doctor’s office. She read off about 4 names of doctors that were good with kids and the pump. Dr. M was the first doctor on the list.

Riley was diagnosed in October 2005 and we’ve been seeing Dr. M since December of 2005. I was very straightforward from the very beginning that I wanted Riley to be on the pump and that is why I went to her. She was upfront too and told me she wouldn’t just stick him on the pump without knowing that he really needed it or that it would benefit him.

We took initial pump training in January and on March 3, 2006 Riley started pumping insulin for the very first time. Dr. M has been there every step of the way. Not only has she seen him every 3 months for the last 3+ years. I have her home number and her cell number. I have been told to call her anytime day or night. I called her in the middle of the night at home early on in the pump start and she was very pleasant and did not seem to mind that I disturbed her sleep.

She is in a private practice. She is the only doctor. She doesn’t even have a nurse. Her office staff consists of her and her receptionist. I love that when I call she knows exactly who I am and who Riley is. She knows that I try very hard and that sometimes in her opinion I try too hard.

She’s never been harsh, but always reassuring. She doesn’t let me off the hook if Riley’s A1C is up, but she doesn’t chastise me either. She focuses a little on the A1C and sugars, but what is most important to me is that she focuses on Riley. She always asks him how he’s doing and if he’s happy. One thing she always asks is: “Is there anything that diabetes keeps you from doing that you want to do?” Thankfully, Riley’s answer has always been no, but I know that if he ever said yes, then she’d sit down with us and figure out how to change that.

I know I’ve rambled on and on. But, I really can’t imagine seeing anyone but her. We haven’t told Riley yet because we don’t want to have to upset him until it can’t be helped. So, I’m going to start looking for another endo so when the time comes we’ll be prepared.

If any of you know a good pediatric endo in NC please let me know. We will not be seeing the one in Eastern NC, Dr. Harris. Dr. M is in Chapel Hill which is about 3 hours from home, so we’re willing to drive that far to see someone as long as they are good.

Who Would I Be?

2009-04-30T08:37:00.004-04:00

Do you ever wonder what your life would be like if diabetes had never touched it? I don't, at least, not usually. But, last night I wondered, not what life itself would be like, but more what I would be like.

I'm usually a pretty easy going person. I'm usually content with whatever is going on around me. I learned early on in life that it's much easier to just go with the flow and wait for the calm instead of trying to tame a raging river.

Then Type 1 diabetes entered my life, not my body, but my life via my three year old child. And, not to sound dramatic or anything, but the moment he was diagnosed my world as I knew it changed drastically. My life has not been the same since October 6, 2005. And, never will be again, I’m afraid.

It’s taken 3 ½ years but diabetes has finally worn me down. It’s chipped away at my once pristine veneer and has left vulnerable parts of me exposed, mostly my heart but also my mind and sometimes I think it’s reached my soul. It’s put several chinks in my armor, enough that I feel exposed and vulnerable to attacks.

Three and a half years ago if you would have asked me if I was strong I would say yes without missing a beat. Now, I’d say the exact opposite in the same manor. At least, I don’t feel strong anymore. I feel like I’ve been pounded over and over again until I’m too weak to even raise my hands to defend myself. It’s just easier to let the blows hit me square in the face.

It’s not just diabetes that makes me feel this way. It’s life in general. Life is tough. But, life has always been tough. I had Holden when I was 17. I graduated high school and went on to college. I made it through nursing school (which is grueling) while commuting 2 hours every day, working part time, and raising a toddler. Those were some tough times, but also some of the happiest times of my life.

I graduated from nursing school, found a job, and moved out of my parent’s house and on my own. Right around that same time I met Michael. We started seeing each other and 3 years later got married. Two years after that we had Riley. Life was good. It wasn’t necessarily easy, but it was good.

Diabetes has its ups and downs like always. Riley’s sugars are back and forth. I’m logging and making basal changes at least once a week. Yesterday he hit 496 on his meter while at school. Then, last night after his site change we chased an impending low for a couple of hours. He never actually went low but was just on the low end of the scale with a ton of insulin on board. He didn’t mind it really. He got to eat sweets with an almost reckless abandon.

Add life to all that and sometimes it seems almost unbearable. Holden will be graduating in a few short weeks. He just signed a lease on an apartment. We’re in the midst of filling out a ton of scholarships so he can afford to even go to school. We’ve pretty much got tuition paid for but have to worry about paying for books, food, and shelter. Next week we will be addressing and sending out graduation invitations.

All the things going on with Holden are not all bad. It’s kind of bitter-sweet. Graduation is the ending of a big chapter of his life. But, college is the beginning of another great chapter. Still, it’s a little stressful to say the least.

Add to that the irate parent that I have to deal with at school. While the higher-ups in my school system say they are on my side they haven’t really done anything to protect me from this parent. I sit in my office on edge just waiting for her to show up and wreak havoc. That is not a pleasant work situation to say the least.

Then, there is the economy. That is affecting everyone. We found out yesterday that effective immediately all NC state employees will be getting a reduction in pay for May and June. Michael and I both work for the state so both of our paychecks are affected. Also, I’m working in a state grant position. It’s unlikely with the current state of the economy that more money will be poured into that grant next year. So, I’m not even sure I’ll have a job next school year. And, with the irate parent situation I’m not even sure I’ll want it anyway.

So, yeah, life is tough. I can handle that. It’s the diabetes part that throws me for a loop. This disease that makes my child sick even though he appears healthy. The disease that causes him to appear different even though he’s really the same as everyone else. The disease that affects his moods (and mine).

Last night as I was getting things ready before bed I turned to Michael and said, “I wonder if diabetes had never entered our life, if all of the other stressors in my life wouldn’t bother me so much.”

Diabetes takes life and sharpens the edges. It takes the pain of life and compounds it, amplifies it. But, what do you do about it? Where is my mind over matter mentality when it comes to this disease?

Right now I’m struggling to find peace with this disease. It’s strange. I don’t really think about diabetes nearly as much as I used to. But, it seems to affect me more. It’s like it really has become a part of my being, my demeanor, my soul. And I don’t know how to change that.

I am Blessed

2009-04-24T22:02:00.003-04:00

Two weeks ago, on Good Friday, a 7 year old boy in my town was killed in an ATV accident. Even though I am not a fan of 4 wheelers and my kids are not allowed on them because I think they are dangerous, from what I understand it was a pretty freak accident. The boy's dad was following him in his truck and the boy was wearing a helmet. It seems things happened just right to cause his death.

His death hit me pretty hard. I didn't really know the little boy. He was in 2nd grade at Riley's school and I'd seen him before because he played soccer in the same league as Riley. But, I've known his dad for 30 years. We went to elementary school together. We were never good friends or anything. But, we still live in the same small town and he always goes out of his way to speak to me whenever he sees me. He's one of those people who seem to always have a smile on his face.

Riley had a soccer game tonight. The little boy who was killed, Henry, has a little sister that plays soccer. Tonight all of the kids wore a black ribbon in memory of him. His parents were there along with his 4 sisters. I sat and watched all of them and a lump formed in my throat.

I am in awe of what a person can endure. I know how hard this must be for them. Yet, they were there smiling and watching their daughter play soccer. They go on with their life, not because they want to, but because they don't have a choice. Life goes on, even when you wish it wouldn't.

It's times like this that I feel ashamed for ever feeling sorry for myself, for ever grieving over Riley's disease. I am so blessed to have him at all. I'm sure Henry's dad would rather every single one of his children have diabetes and still have Henry with him.

If you get a chance remember the Spruill family in your prayers. And hug your kids a little tighter tonight when you tuck them into bed.

Random Updates

2009-04-21T08:56:00.008-04:00

It's been a while since my last post, so I thought I'd do a little mini update:

Holden has been counting down his senior year by Mondays. He has 4 Mondays left and then he will no longer be a high school senior, but a college freshman. Some days I think I'm ready for it and others I don't.

Riley is on another school trip today. He's going to see another play. School trips are stressful for me. For those of you with kids with D you know why.

I've been having a hard time at work lately. I have a disgruntled parent. She's one of those people that are unhappy no matter what. Apparently, she's always given the school nurse a hard time, but for some reason is being even worse with me. I don't want to go into details, but it makes for a very stressful work day.

We took a mini family vacation last week to an indoor water park. I promise to post about it soon and include some pictures.

Riley's sugars over the last couple of weeks have been great for the most part. But, for the past few nights he's run high all night and wakes up with a great sugar. One thing about having a kid with D you always know when they are growing. Riley runs high at nights when he hits a growth spurt.

I had one of the worst if not the worst headache I've ever had last night. It started yesterday morning and kept building until my head was pounding and I thought at one point it might literally explode. Ibuprofen, Darvocet, and ice packs did nothing to dull it. I finally drifted off to sleep last night and when I woke up it was gone. But, now I'm getting another dull ache in my head. I'm hoping the Ibuprofen I took will head it off before it's gets much worse.

I just re-read my first update and started to cry. I guess I'm not ready.

The pollen here is CRAZY. It's always bad, but this year the trees have gone crazy with their reproduction. I think this coupled with the stress at work created my super headache last night. I'm trying to get Riley through pollen season without any real asthma problems. So far, so good.

At some point a few nights ago Riley screamed that he hated diabetes. (He couldn't have a snack until his sugar came down some. He was in the 300s). All I could do was hug him and let him know that I hated diabetes too. I also whispered in his ear that if I could take his diabetes away and give it to me I would.

Last, but not least here are some prom pictures. I did OK at prom. I went to take pictures and Michael had to almost literally drag me out the door to get me to leave. The tears started before we ever got out of the parking lot. Man, I'm going to miss that boy next year.

Holden and Brittaney (as of Thursday they will have been dating for 3 years)

My baby

Me and my baby

Memory Mondays: Dec. 31, 2005

2009-04-06T08:00:00.000-04:00

It was strange going back and reading this post and thinking about life prior to Riley getting diagnosed with diabetes. And, somehow it didn't make me sad like it used to.

Some(most)times I forget that there ever was a life prior to Riley having diabetes.

Something that stood out to me when I read this post was the part in July when I wrote about the awesome vacation we took to the mountains. I remember not long after Riley was diagnosed I was thinking that I was so glad we took that vacation when we did. I thought it would be impossible with D to take a vacation like that again.

Now, I'm glad to know that it is not impossible. It may be a little harder, but it's certainly doable. Actually, we have a nice little get away planned over Easter break. I am really looking forward to it.

And, now that I'm writing this I just realized that in all the planning for the trip I didn't think about how we would fit his diabetes into it at all.

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What A Difference A Year Makes

Since this is the last day of 2005, I thought I'd reflect on the past year and see what happened. I keep all my calendars. I have calendars of when I was in college. I could tell you what test I had on what days. I don't keep a journal or diary, so my calendar is how I remember things. So, I took my 2005 calendar to see what some of the highlights were.

January was filled with basketball games for Holden. Riley also had a Dr's appointment with the orthopedic Dr. You see, he fell in December and broke his leg. It just happened to be the morning after I had surgery. So, I spent my first day post-op carting him around to the Dr. and to get xrays and then to get a cast. Luckily, my husband had taken the day off to help care for me. He did the driving. So, I was able to pop a Percocet every now and then. Man, I thought I had it rough then. Didn't know what was lurking in October for us though. Anyway, got a little off target with that. I attended a funeral of one of my patients and also the funeral of a very nice older man in my church.

February brought more basketball games. We hosted a Super Bowl party for our church youth. Holden turned 14. On Valentine's Day, I was at church helping to host a spaghetti supper and bingo night for the senior citizens. My Granny's birthday was celebrated also. We celebrated with supper at my mom's house. Also, remembered the one year anniversary of Big Mama's death.

March brought my 5th wedding anniversary. It was spent in Greensboro with the youth of our church. We took them to Acquire the Fire that weekend. It was wonderful. I really learned a lot that weekend and became closer to God than I have ever been. I feel like my experiences that weekend helped me with what was to come later on in the year. Even though we were there on our anniversary, it was still nice. The youth and other chaperons arranged rooms so that Michael and I were alone at night anyway. I kind of enjoyed spending that time with the youth at church. I really do love all of them and feel like they are in some ways my other sons and daughters. My cousin's son,Cam, turned 4 in March. Easter was in March. Easter is my favorite holiday. Holden joined church during our Easter Revival. March 23rd is his re-birthday. Holden's baseball games started. Yes, baseball in the freezing cold.

April brought Michael's birthday. Baseball games continued.

In May,Holden was baptized amid family and friends. May was also Riley's 3rd birthday. We had a small family party. Two days later, I had my parents, in-laws, and Granny over for a mother's day supper. May also brought another broken bone. This time Riley tripped while we were fishing and broke his clavicle. Every time we ride past that spot now he says," That's where I broke my cravicle!" The school's athletic banquet was in May. Holden received a trophy for MVP in basketball. There was also an academic award ceremony in May in which Holden received recognition also. Holden's school baseball ended only to bring in playing baseball at the ball park every Friday and Saturday night. Man, what am I going to do when my kids are gone? School ended for Holden.

In June there were more Friday and Saturday night ballgames. My husband applied for and was accepted to graduate school. Holden attended basketball camp. We had our annual Warren family reunion. This is my Granny's side of the family. She is one of 12 children. God bless Grandma Warren!

In July, Holden made All stars and we traveled to Kill Devil Hills for games. At one of these games Riley spiked a temp. up to 103. With no warning, all of a sudden, he just didn't feel well. He had no other symptoms, just a fever. It came down after Tylenol and Motrin and never came back. I suspect now that was what ultimately caused the demise of his beta cells. I want to cry right now thinking about it. Michael and I joined a church softball league. Luckily, their games didn't start until after Holden's were through. We also took a family vacation to the mountains of NC. It was the best vacation we ever had. We enjoyed sliding down sliding rock. Even Riley went down it with Michael. We hiked to a water fall. We started the trip by going to Charlotte for my brother-in-law, Timmy's ,wedding. We came back just in time to do Vacation Bible School with the youth.

In August we threw a going away party for one of our church youth that was headed off to college. The boys and I spent a day at Water Country in VA. It was fun. Riley went down every slide that we did. Maybe I really do need to look into a waterproof pump, huh? I forgot, we also joined a beach club during the summer and spent many a lazy day on the Chowan river. We also continued with the softball games. Holden started his first day of high school. I cried after I got home. I couldn't help myself.

In September we finished up the softball games. My dad had a birthday. As did my mother-in-law and father-in-law. I bought a new car. I traded in my gas guzzling mini van for a Pontiac Vibe. I absolutely love it. My dad had surgery. My nephew, David, turned 4.

Well, October brought in the bad stuff. On October 6th, Riley was diagnosed with diabetes. Evey thing seems to be a blur after that. We had fall revival at church. I went up to the alter every night and cried my eyes out begging for God to heal Riley. I went to the OB-GYN a week after Riley's diagnosis for my check-up only to find that I had yet another cyst. Luckily, this one went away on it's own. I think I willed it to. I just couldn't go through another surgery right then. Riley celebrated his first diabetic Halloween. I cried, just like I cried about just about everything back then.

I had my birthday in November. I didn't really feel like celebrating. We went to my mom' s and had my favorite meal, BBQ'd pork chops, french fries, and pineapple cake. Riley had his first taste of cake since diagnosis. His sugars did fine, but my nerves didn't. November started up basketball again. We had to learn how to feed Riley around basketball games. So far, so good. We survived Thanksgiving. I had a wonderful meal at Granny's house. Michael decided to hold off on grad. school for now, for financial reasons beyond our control. (aka: insulin, syringes, strips, you get the picture)

Well, that brings us to December. Michael made an "A" in the grad. class that he was taking. My mom's birthday came and I cooked a meal for her. Riley once again indulged in some cake without really affecting his sugars. My cousin's daughter, Jewel, turned 2. The weekend of her party was really the only time I had to go shopping so I missed it. But, my mom went and took Riley with her. I'm told that a boy at the party asked Riley why he wasn't eating any cake to which he replied. "I can't have cake. I have diabetes." Riley had his first endo. appointment with an A1C of 7.9. He had a second one with an A1C of 7.8. and the OK to try the pump. :-) Basketball continued. We had a youth lock-in at church. Riley spent the night with my mom and somehow the world didn't end like I thought it would. We had a very nice Christmas, bouncing from house to house. We started at Aunt Judy's, then, my parents, on to church, then, Aunt Linda's, then, my in-law's. Riley's sugars were pretty bad, but we got them straight eventually.

So sorry to have bored you with all of this. I really doubt anyone will read it all. But, it has really helped me to see what a great life I have. And, that greatness didn't end when Riley was diagnosed. I can't wait to see what 2006 brings.

I wish all of you a very safe, happy, and truly blessed New Year's.

How to Protect the Pump?

2009-04-02T09:44:00.002-04:00

Riley is getting ready to start baseball. This will be his first year playing with a real baseball. Prior to this year he was playing T ball and they used a soft, spongy ball.

Since Riley does better when his insulin delivery is not interrupted, I really want him to wear his pump while he plays. But, every time I think about that hard baseball accidentally hitting his pump, I cringe.

So, does your child wear their pump while they play sports? If so, how do you protect it?

Riley wears an Animas 1250. I've looked at Animas' web site and do not see a protective cover for the pump. Any ideas?

Memory Mondays: Dec. 6, 2005

2009-03-30T08:15:00.000-04:00

I had to smile when I read this post. Ahhh, how naive I was back then to think that when I gave insulin Riley's sugar would always go down.

And, 1/2 unit of insulin per 45g carb? Holy cow, how did I do that? Riley barely eats 45g carb per meal now.

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The Science Experiment

Anyone else out there feel like your child or you are a science experiment? I just am still uncomfortable with trying a new dose to see what it does. I know the only way to know if something will work is to try it, but sometimes I feel like a mad scientist (emphasis on the mad).

Riley's sugars had been running a little high after he ate, so I figured it was time to adjust his carb ratio. So, instead of 1/2 unit per 45g, I went to 1/2 per 30g. Well, yesterday his sugar at lunch was 80. He ate 35g carbs, so he got 1/2 unit NovoLog. Well, a little over an hour later, it was 375. Now how did that happen? I'm wondering if his sugar dropped low and he rebounded. I just can't see how it could jump so high so quickly and he had taken insulin. Then, at supper that same night, it was 173. He ate 45g carbs (including regular cake for my mom's birthday party). Well, he got 1/2 unit for that and 2 hours later it was 78. So what's the deal? I think his pancreas is just screwing with me.

Then, the only way I can keep his sugar from dropping too low during the night is to give him regular pudding before bed, but that tends to shoot his sugar up. Last night when his sugar was 78 he had pudding and at bedtime it was 243. So, what do I do? I don't like his sugar dropping into the 50s and 60s, but I don't like them in the 200s either. We've tried different things for his nighttime snack (including corn starch) but the pudding seems to work the best to keep his sugars up. How do I decide which is the lesser of two evils?

OK, I'm going to get back to my science experiment. But, on the bright side, science was always my best subject.

TGIF (updates)

2009-03-27T08:15:00.006-04:00

Riley had a filed trip yesterday. He was so excited. He loves getting to ride on the bus. The problem is that when Riley gets excited he tends to go low. He went to see a play. The night before the trip I set a basal just for the field trip. His eating schedule was going to be all screwed up. He usually eats lunch at 11:15 and snack at 2:15. But, because of the timing of the trip he ate a snack at 9:15 and didn't have lunch until almost 2:00. He did OK except for a couple of lows. When they arrived at the play he clocked in at 47. It was brought right back up by juice. Then, on the bus ride back he went in the 60s once and then hovered in the lower 80s until he had lunch. All in all, I'd say it was a success. The trip has been looming in my mind for over a week now. I'm glad it's behind us and that everything worked out OK. I didn't go with him for three reasons: 1) His teacher cares for his D every day and I knew she'd do OK with it. 2) I didn't want Riley to be the only one with a parent going. 3) The play was held in the same city where Michael works. I knew if anything major happened he'd be near-by to take care of it.

Holden's prom is tonight. It was all I could do last night when he dressed up in his tux not to cry. He looked so handsome and grown up. He will be heading to beach after the prom to spend a couple of nights with friends (and one friend's parents). I told Michael it will be a preview of what life will be like in a few months when he goes away to college. It's been a very long time since Holden spent a night away from home, let alone 2 nights in a row.

Riley's overnight sugars were excellent. Those sugars have been the hardest to wrangle in lately. He was 186 when Michael and I went to bed. He got a tiny .15 correction and the rest of his sugars were wonderful. He woke up with a sugar of 89 this morning. You gotta celebrate the small things, you know.

My favorite season is just around the corner. I love spring. I can't wait for it to warm up here and stay that way. We've had a few nice, warm days and then it will cool back down again. And, spring break is only 13 days away!!!! Michael and I will both be off of work and both of the kids will be out of school. I can't wait.

It was brought to my attention by a reader (hi Chris) that his daughter had noticed that Riley did not have a medical alert bracelet on in any of his pictures. Riley has had a couple of bracelets and a necklace over the last few years, but I've never been really strict about him wearing them. I guess because for the first couple of years he was hardly ever away from us. I started researching what jewelery other kids were wearing. I found Riley's old necklace. It's a little dog with a medical alert symbol on it. I made him start wearing it all the time. Holden wears some sort of necklace every day, either his purity rings or my dad's dog tags from Vietnam. So, Riley decided it was cool to wear a necklace because big brother Holden wears one. He did OK for the first few days, but then kept asking to take it off. I wouldn't let him. He's been wearing it for a couple of weeks now and doesn't seem to notice it at all anymore. And, I feel better, especially when he goes on trips like he did yesterday.

Next Saturday we will attend open house at the college that Holden will be attending. It will kind of be like a homecoming of sorts. Michael and I both attended college there. We will be looking at apartments that day also. It's just bringing us one step closer to Holden leaving home. sigh......

I haven't mentioned my dad in a while. Regular readers may remember that he was diagnosed with throat cancer back in August. Well he went through several weeks of chemo and radiation, several rough weeks which included a hospital stay, but now he's good. The treatments worked. He has no sign of cancer anywhere in his body now. Thank all of you for your prayers.

I guess that's it for now. I hope each of you have a wonderful and safe weekend.

Keeping a Positive Attitude

2009-03-25T09:32:00.001-04:00

I wrote in my post yesterday that I am going to chose to have a positive attitude. I have been doing that. But, on my ride into work this morning I was thinking how much easier it makes it to have a positive attitude when Riley’s sugars are doing well.

His sugars have been much better the last few days. I’ve been making basal adjustments at least weekly and have gotten his sugars reigned in for the most part. The only time he’s going high consistently is right after bedtime. I adjusted his basal a bit last night as well as his nighttime carb coverage. He’s also been going on the low side around 3 in the morning, so I’ll adjust again tonight to account for that.

I’m thinking my positive attitude comes from the good numbers. And, a good, long cry I had a few nights ago. I had felt it building up but had been trying to push it aside. Even though I know sometimes it helps to just let everything out, I hate to cry. I don’t think it’s a sign of weakness, but maybe a sign of defeat. When diabetes gets me down enough to cry, I feel like somehow it’s won.

Thursday night, I couldn’t contain it anymore. Riley started complaining of an ear ache. He was crying and holding his ear and he had a temperature. I knew he had yet another ear infection, his 3rd in 5 weeks. I gave him Tylenol for the pain and I had him lie with his ear on a heating pad. It didn’t help. He continued to scream out and hold his ear in pain. A couple of hours after the Tylenol I gave him Ibuprofen. After a while that seemed to help.

Michael and I sat in the floor with him and played several games of Sorry Sliders. Then, it was off to bed. A quick check of his sugar showed he was soaring in the 300s. I increased his basal like I do whenever he has some sort of infection and administered insulin as well as his nightly inhaler. All the while I was holding back tears. I refused to cry.

I tucked Riley into bed. As I sat on the couch thinking about having to call the doctor in the morning, I started to cry. It was soft at first. I quietly slipped out of the living room and went into the bathroom. That’s where I do most of my crying.

I sat in there and cried and prayed. I cried from deep within my soul, crying like I hadn’t done in a very long time.

I felt defeated and helpless. Riley has had so many infections and sicknesses over the past several weeks that it makes basal adjustments hard to do. You have to have a few “normal” days of sugars to adjust, but with all his sickness it was rare for him to have several normal days in a row.

In addition to defeat and helplessness I felt guilt, lots and lots of guilt. I felt guilty that I wasn’t doing enough to fight Riley’s diabetes. I felt guilty that he ended up with diabetes in the first place. I felt guilty that it wasn’t me instead of him. I felt guilty that I hated a disease that was part of my son. I felt guilty that I felt like I just couldn’t do it anymore.

My head knew that I didn’t give Riley diabetes. My head knew that I have been working very hard to care for Riley. My head knew that I would take it away from him and give it to myself if I could. My head knew that I could take care of him; I didn’t really have a choice.

But, my heart was a whole other matter. My heart didn’t care what my head thought.

I sat in the bathroom long enough that Michael eventually came to check on me. When he asked if he could come in I told him no. I needed to be alone for a while. He came back several times to see if I needed anything. He was very sweet and understanding.

I finally emerged from the bathroom. Thankfully, Riley was asleep and Holden was at work, so they didn’t have to know about any of it. I let a few more tears out before the night was over. By the time Holden got home from work I was done with the pity party and ready to move on.

Riley went to the doctor on Friday and was diagnosed with a “nasty ear infection”. He is on his third antibiotic in 5 weeks. His sugars started to come down by Sunday and I was able to get rid of his temp basal. His sugars for the last two days have been the best they’ve been in a while.

My positive attitude is still there for now. I am going to try very hard to keep a positive attitude even when things are not going well.

I hope I have a while before I have to find out how I do with that.

Memory Monday: Dec. 2 ,2005 (yes I know it's Tuesday)

2009-03-24T14:11:00.006-04:00

I don't know what to say about this post. I was so happy that Riley's A1C was 7.9. Now, a 7.9 brings me to tears and makes me feel like a failure.

This post reminds me that perspective makes a huge difference. I can chose to see things as positive or I can chose to see things as negative. I've been choosing negative lately.

Today, I will chose the positive.

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The Endo. Appointment

Well, just a quick post to tell about Riley's first endo. appointment. It went very well. I didn't know what his A1C was in the hospital. I found out today that it was 9.7. Today it was 7.9!!!!! I was so excited.

For his age, the Dr. wants it between 7.5 and 8.0. The ADA recommends 7.5-8.5. So, either way he's in range and I'm very happy. Plus, he's only had D for 2 months. Since it is a 3 month average of his sugars the endo. said that he has a month in there where we didn't know he had D, so if we checked again next month, she seems to think that it would even be lower.

Overall, a good appointment. But, I didn't get the answer I wanted about the pump. They wait at least a year before they'll even discuss, then they don't really recommend it.

On the way to eat after the appointment, Riley said "I forgot to ask about the hook thing" (that's what he calls the pump because I told him he'd be hooked to it) I told him I had asked. "What did she say?" "She said you're too young." "Well, I don't like taking shots. Can we find another Dr?"

So, I will be scouring the internet for ped. endos. that are within 2 hours from here. Wish me luck. 7.9, yeahhhhhhhh!!!!!

Memory Mondays

2009-03-16T14:53:00.002-04:00

I have decided that every (or most, let's be realistic) Mondays I am going to re-post an older post. I will start with the oldest ones and work my way forward.

I've been spending more time on Children With Diabetes lately. I spent A LOT of time up there in the first few months after Riley's diagnosis. I got a lot of good advice there. Now, I check in at the forums from time to time. It's my way of giving back. While I am by no means an expert at diabetes, I know that the 3 1/2 years of experience can help a "newbie". If nothing else I can give some encouraging words and a shoulder to cry on.

Reading the comments made from the newer parents kind of brought all the emotions flooding back for me. I went back and read some of my older posts. It brought up a lot of emotion, but it also made me realize how far we had come.

Anyway, this was originally posted on November 30, 2005 (8 weeks after Riley's diagnosis). I wrote it one night when I was feeling particularly sorry for myself.

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Somewhere A Mother Is Crying

My sweet little boy just took a shot
Somewhere a mother is crying
Sometimes he asks "Will it hurt a lot?"
Somewhere a mother is crying

We check his sugar several times a day
Somewhere a mother is crying
When his sugar is high, we go out and play
Somewhere a mother is crying

My son has diabetes and I feel sorry for myself
Somewhere a mother is crying
I worry about the long-term effects on his health
Somewhere a mother is crying

My boy is full of life
Somewhere a mother is crying
One day, I hope he has children and a wife
Somewhere a mother is crying

A mother somewhere has just lost her son
If only there was something she could have done
She learned of the cancer six months ago
Now she has had to let him go

She sobs and she grieves for the life he'll never live
She mourns because he had so much love to give
She cries because she misses him so
It was so hard letting him go

My son just came in and gave me a kiss
Somewhere a mother is crying....

The Slap

2009-03-15T20:28:00.001-04:00

Riley is sick again for the fourth time in about six weeks. He’s had two ear infections, a bout with asthma, and now, he’s running a fever, no other symptoms, just a fever which has made his sugars go up.

Last night he was sitting on the couch in between Michael and me. He eventually put his head in my lap. Next thing I knew he had fallen asleep. When Michael picked him up to put him into his bed he noticed he felt warm. I checked his temperature and it was 101.6. His only complaint all day had been a headache. His sugars had been good too, the best they had been in a while.

Ibuprofen brought his temperature down. The regular middle of the night sugar checks including temperature checks. He did OK until about 6:30 in the morning when it started to rise again and he got more Ibuprofen. Somehow, his sugars were perfect all night long.

That hasn’t been the case today. He’s been high all day. Right now he’s running at an increased basal to try and counter-act that.

For most other kids, being sick is no big deal. As a mother you hate to see them feel bad. You worry about them, but not like you do when diabetes is involved.

When your child with diabetes is sick, you feel more than sympathy, you feel fear. You’re on alert all the times anyway, but now you’re on high alert. Every little complaint could mean something. A tummy ache becomes a very big deal.

It is days like today that diabetes slaps me in the face, leaving my cheek reddened. It stings and I feel my eyes fill with tears. My hand flies to my face and I rub my cheek wondering why I didn’t see it coming.

I know I’ll deal with this and move on. The fever will subside and life will return to our kind of normal. Riley will have highs and lows. He may even have a few days of good sugars.

The pain comes from knowing that it won’t last. Just when I convince myself that I can handle this, that we have things under control, diabetes will reach up and slap me in the face again.

And again, and again, and again……

Ode to ER

2009-03-13T10:12:00.003-04:00

When ER first started I was in nursing school. The thing to do on Friday morning before class started was to laugh about what happened on Friends and to discuss what happened on ER.

I remember the very first episode where the audience was first introduced to Noah Wyle’s character, Dr. Carter. I loved him from the very first episode and was sad to see him leave the show.

I haven’t liked every character on the show. I was never a fan of Susan Lewis. I didn’t like Dr. Weaver from day one. I was actually happy to see her leave the show. And, you couldn’t help but dislike Dr. Romano, but sometimes I found myself liking him in spite of myself. Once he got his arm (literally) chopped off I couldn’t help but feel sympathy for him. I didn’t like Archie (Dr. Morris) for a long time, but now he is one of my favorite characters currently on the show. Neela has never been one of my favorites either.

My favorite character will always be Dr. Carter. But, I also loved Dr. Greene and Doug Ross. Abby was always a favorite of mine. And, her mother was played by one of my favorite actresses, Sally Fields. Peter Benton was an awesome character. And, Jerry, the desk clerk, who couldn’t like him? I loved Dr. Pratt. Dr. Banfield is still growing on me.

I am not a big TV watcher. I have a few choice shows I watch. ER is the one show that I consistently make a point to take time to watch. I’ve been doing that for 15 years.

I particularly loved last night’s episode. Old characters have been brought back a lot this season. This started with the much loved Mark Greene. Dr. Carter just came back to the show a few episodes ago. And, last night saw the return of Dr. Benton, Carol Hathaway, and Dr. Ross.

For someone who doesn’t watch a lot of TV I guess this seems like a strange post to write. But, like I said, I’ve been watching this show for 15 years. I have come to love the show and while I know it’s time for it to end, I will be sad to see it go.

How Do You Feel About Embryonic Stem Cell Research?

2009-03-10T11:32:00.004-04:00

I have never gotten political on my blog. I'd like to keep it that way.

I read Amy's blog today and was appalled at the things some people will say, both those who support ESCR and those that do not.

I was just wondering how those in the diabetes community feel about it without making it into a political/religious war.

If you would like to leave a comment that's fine, but anything that is disrespectful to someone else's religion/opinion/race/whatever will be deleted.

Take my poll.

Online Surveys & Market Research

2009-03-09T09:18:00.000-04:00

Most days diabetes doesn’t get me down too much. If Riley is really high or really low it might upset me for a bit, but once the high or low is gone I’m OK.

But, for the last several days the needle pricks and the counting of carbs have stung a little more than usual.

I think it all started on Thursday. While we were on our way to the doctor to follow up with Riley’s asthma, he’s doing great with that, by the way, Riley started talking about diabetes.

I’m not sure what started it, but at some point he said, “If I get rid of my diabetes that means I can eat whatever I want, right?”

“Yeah, I guess so.”

“So, that means I can just eat as much as I want? I can drink real drinks too?”

“Yes, that’s what it means.”

“Wow.”

I felt my throat catch. It’s such a foreign thought to him. The idea that he can walk to the cabinet or fridge, grab whatever he wants, and eat or drink it sounds like heaven to him. It’s something that we non-D people just take for granted.

He’s mentioned diabetes a few more times since then. And each time it’s tugged at my heart.

Thursday night I made some basal adjustments. I called Riley into the room so I could remove his pump to reprogram it.

As I was reaching into his pocket to pull out his pump he stated, in a very stern voice, “I hate diabetes!”

“Me too, son.” Then, I gave him a great big hug.

And, that adds to the pain. All I can do is hug him when he feels this way, listen to him vent his frustrations. I know hugs and listening to him are important, but it doesn’t change anything.

He still has diabetes. He still has restrictions on his eating. I know we say “People with diabetes can eat just like everyone else.” I’m not sure why we say it. We all know it’s not true.

That’s something I struggle with too. He’s a growing boy, I want to just let him eat and eat whenever he wants. But, it’s not as easy as it sounds.

One night this week I was on the couch. I had been eating some mixed nuts. Riley saw the container and asked for “one”. Yes, just one. I know nuts don’t have many carbs in them. But, he only asked for one because he knows he can’t just reach into anything and grab a handful and walk away.

My throat caught and my heart ached again. This time I almost cried. I grabbed him and hugged him and told him I was sorry that he has diabetes.

Maybe it wasn’t the best the best thing to say. But, I said it, because I meant it.

Usually it’s the highs and lows that alter my moods. But, sometimes it’s just the plain old day in day out stuff that comes along with the disease.

And, because that “stuff” happens to my son instead of me, sometimes it’s almost unbearable.

Why I Love the Pump

2009-03-03T18:21:00.004-05:00

1. Being able to accurately dose tiny amounts of insulin.

2. Riley can eat his meal and then if he wants something else after he's already had insulin all we have to do is program it in the pump and give the insulin, no extra injection needed.

3. 2-3 needle pokes per week compared to 28-35.

4. Being able to adjust insulin levels at certain times of the day. (Riley has 7 different basal patterns in one day.) He ALWAYS went low at night on Lantus no matter what we did, corn starch, large snack, split dose, nothing worked. With the pump I can decrease his insulin at night and it works very nicely.

5. Temp. basals: I absolutely love temp basals. They make life so much easier. We mainly use them at night, if Riley is lower than I like (but still in range) I can just decrease his basal for a couple of hours and most times it takes care of it. There is no need to wake him to drink juice or eat fruit snacks (as long as he's not low, low). Temp. basals are also very handy for sports or other increase in activity.

6. Having a happier healthier Riley.

7. Having a happier mom (me).

Riley started on the pump exactly 3 years ago today. I hate that he needs it in the first place, but am so grateful that he was able to get it so early on in his diagnosis. Life is never easy when it comes to diabetes, but the pump makes it easier.

One More Thing

2009-02-19T18:31:00.001-05:00

Riley woke up yesterday morning complaining that his chest hurt. I listened for wheezing and did not hear any, but he was coughing some. A lot of times coughing leads him to need his inhaler, so I went ahead and gave it to him.

He had a bought of wheezing in September where we ended up in the ER, and, then again, the week of Christmas. Both times he was placed on Prednisone and both times the wheezing cleared.

But, it had been rearing its ugly head off and on. Riley averaged using his rescue inhaler for wheezing about once every couple of weeks or so. Never two days in a row.

Riley continued to have to use his inhaler all through the night last night and again this morning. Every time he’d been to the doctor for his wheezing it was explained away as “just one of those things”.

Today when he left the doctor’s office we left with an asthma action plan to take to school and a new controller inhaler that he must take twice a day every day.

It’s one more thing my little man has to deal with. Asthma.

I did OK with it at first. I was relieved that they finally put him on a medicine to help control his symptoms. The inhaler he was on only treated the symptoms once they occurred.

I was upbeat about it when I told Holden and he freaked out. I told him everything would be fine.

I was firm with Michael that everything would be fine when I told him and he freaked out too.

But, now sitting here I just want to cry or scream. All I keep thinking is: Didn’t he have enough to deal with already? Isn’t diabetes enough?

When I look over at him perched on the edge of the couch his weight shifted slightly onto his left hip so as to not bother the new, tender site I just inserted it’s all I can do to hold back the tears.

In my heart I know he’ll be fine. Just like diabetes it’s not going to stop him from doing what he wants to do. It’s just one more thing.

It’s one more thing to check on in the middle of the night, one more contraption to add to my pocket book, one more medicine co-payment every month, one more thing to monitor during sports, one more thing on his plate….

Always Something There to Remind Me

2009-02-18T14:30:00.003-05:00

Since the attack of low blood sugars things have been going pretty smoothly as far as diabetes goes. It has its ups and downs like always but for the most part it’s been somewhere in the middle.

I am more at peace with this disease than I have been in several months. Since school started in August it has been a never-ending roller coaster ride of highs and lows (mainly highs). Then, he had the never-ending lows. Now, he has a few highs, he has a few lows, and several numbers in between.

I try not to let the numbers affect my mood, but I find it to be nearly impossible. There are days when I do OK even if he’s had several highs or several lows. But, for the most parts the “good” days are the days where his sugars behave somewhat.

Even on those days diabetes is still always on my mind. I sometimes wonder what thoughts would fill my head if diabetes had never entered my life. It seems that almost everything is connected to diabetes in some way.

When I see a new food item in the grocery store I don’t just look at the price, I immediately flip it over and read the carb count. Even if I don’t plan on purchasing it I still look and make a mental note of the carbs. I do this because if we come across this particular item in the future I’m hoping I’ll have some knowledge as to how many carbs for which to bolus.

When I try to find anything in my pocketbook, which is a chore unto itself, I have to wade through juice boxes and bagged snacks. I push aside ketone strips, used test strips, and a carb counting book just to find a pen. While I don’t consciously think about diabetes at that time, it’s still a faint reminder that the disease is very much a part of my life.

When Riley mentions that a classmate has a birthday the next day, I don’t automatically ask him how old the child will be. First, I start wondering if there will be a party and how many carbs he might have and if they’ll have cookies or cake. Then, I pray that his sugar will cooperate so when he partakes of the tasty treats his sugar won’t go from high to sky high. Then, I get around to asking how old his friend will be.

A few nights ago I was looking for a baby picture of Holden for his annual. While sorting through the pictures I came across one of Riley sitting in Michael’s lap. Riley was almost a year old. I looked at those chubby cheeks and, other than thinking how cute he was, I thought about how he didn’t have diabetes when that picture was taken. It’s strange that I’d even think of that, but I did.

Last week I had a meeting with some other school nurses. My cell phone would not pick up in the building where the meeting was held. This made me nervous. What if his teacher needed me? I kept excusing myself and would walk outside to where I had a signal and would check to see if I’d missed any calls or is I had any voice mails. Even while in a meeting at work it’s on my mind.

The thing that has struck me as most odd lately was when I began reading my latest book. It started out with a prologue and then it went into the main story. The first page of the main story had a date at the top, “February 2005”. I kid you not, my first thought was “Riley did not have diabetes in February 2005”. Why? I have no idea. Then, I quickly calculated that 8 months later, he did.

I don’t know why my mind always goes to diabetes. I wish I could change it, but I don’t know how. I guess the best advice is to say “just stop thinking about it”. But, I can’t. It’s kind of like if I say to you “do not picture the front door of your house”. Of course, the first thing you do is picture the front door of your house.

I hope to one day find out what I'll think about when there isn't diabetes to think about anymore.

It's All Good

2009-02-13T11:05:00.001-05:00

I didn't shed one tear yesterday. It's strange, but I always seem to do that. The days leading up to the actual event are worse than the actual event itself.

Holden played a great game last night, one of his best all year. And, the icing on the cake was that we beat our conference rivals. It couldn't have been a better ending to a home season. Of course, basketball isn't over yet. He has a game tonight and then a tournament next week. Hopefully, we will move on and play at the state level also.

I'm surprised at how well I did. I didn't feel myself tear up at all. I just smiled the whole time and thoroughly enjoyed the game. Even after the game when I got a sweat-laden hug from Holden I did just fine. He hugged me and said "It's been fun." And, all I could say was, "Yes, it has."

Riley is back to his old self again. He's not having any more tummy issues and he's back to eating me out of house and home. His sugars have returned to normal, or normal for having Type 1 diabetes. He hasn't had the lows he was having. And, if he's gone low it's come up like it should with treatment. So, I guess it was just a nasty old virus that just had to run its course.

And, last but not least, I was tagged a while ago by Jill to list six things that make me happy. I'm not going to tag anyone but if you'd like to play along, by all means, please do.

1) Being a mother. There is nothing like it. Sometimes I can look at my boys and my heart feels like it's going to burst with love. And, it's not just having my kids, but all the other stuff that comes along with being a mom. I love the games and practices. I even like the homework. I like anything that involves spending time with my kids.

2) Sleep. Yep, just plain old, every day, run of the mill, sleep. I guess it's because I don't get much of it. Holden slept through the night from the time he came home from the hospital. He would wake occasionally for a bottle and go right back to sleep. But, not my Riley. He did not sleep from day one. I tried everything, rocking, singing, crying, praying. None of it worked. He just WOULD NOT sleep. He'd lie for hours and just stare up at me. I'd put him in his crib and lay my hand on him and he'd stay quiet. But, as soon as I removed my hand off of him he'd start crying again. Around the time he turned 3 he started sleeping through the night. 5 months later he was diagnosed with Type 1 diabetes. Now he sleeps through the night, but I still don't.

3) A good song. There is something about a good song that lifts my spirits. Most of the songs like that are ones with an up beat. Some of the songs I can think of that seem to make me happy no matter what are: Billy Jean by Michael Jackson, Love Shack by the B52s, Kiss by Prince, and Respect by Aretha Franklin. There are plenty others.

4) A clean house. I love to have a clean house. It just seems like all is right with the world when the house is clean. But, I'm glad I don't get all my happiness from a clean house because then I would be a very unhappy person, especially during basketball season.

5) Reading. I love to read. I went through a several year period where I did little to no reading. I just did not make the time to sit and read. I have recently started going to the library and checking out books to read. I love to sit with my feet propped up on the couch and read.

6) Foot rubs. Early on in my marriage I used to get them on a regular basis. When I was pregnant with Riley I got one every night. I haven't gotten one in a while. Maybe that's what I'll get for Valentine's Day. (Hey, Michael, are you reading this? A foot rub is free and it makes me happy. )

Have a great weekend everyone!

Senioritis

2009-02-12T09:46:00.003-05:00

I am emotionally spent. I cry at the drop of a hat and that is just not like me.

This senior year stuff is hitting me pretty hard. It's been in the back of mind since school started in August. I've been able to keep my emotions at bay for the most part. But, on senior night when all his class stood together flanked by their parents and the announcer said, "I present to you the class of 2009", it hit me like a ton of bricks.

There will be several lasts over the next few months. Followed closely by some firsts.

I guess I've put off thinking about it as long as I can. There are things that have to be done now, college dues that have to be paid, open houses that have to be attended.

Tonight is Holden's last home basketball game. I tear up just thinking about it. He's played on that court for the last 6 years. I played on the same court when I was his age. When he steps off the court for the last time tonight I know I'll be a ball of tears.

My baby is growing up and there's nothing I can do about it.

I know he's ready. He's a good boy with a good head on his shoulders. But, I'm not ready for him to grow up just yet. I'd like to keep him at home for a few more years.

His graduation invitations arrived last week, his cap and gown a few weeks before that. He has picked out the college he will be attending and the enrollment has been paid. I have been researching apartments that he might be able to rent with a friend. (He is insistent that he does not want to live in a dorm with a stranger. Plus, living in an apartment is almost as cheap as a dorm.) The FASFA has been sent in. We've applied for several scholarships.

All this stuff adds up to one thing, preparing my boy to leave home. Like I said, he's ready, I'm not.

Last night while Holden and Michael were at practice I was flipping through the TV. I found an old 20/20 episode that looked pretty good. It was about a 16 year old girl who was pregnant and was giving her baby up for adoption. The episode showed her interviewing couples and trying to decide which one to give her baby to.

I cried the entire hour. I was trying to eat supper and would get straight long enough to chew and swallow only to start sobbing again.

I was 16 when I got pregnant with Holden, 17 when I had him. I am so blessed that I was able to keep him and raise him as my own. I am blessed that I had parents who helped support me so I could stay in school, get a college education, and raise my boy.

I kept looking at that 16 year old and crying. She didn't have a choice. She didn't have her parents support. She had no way to raise a baby on her own. But, she loved him before he was ever born, just I like I did with Holden. I can't imagine having to give him over to someone else.

I can't imagine how much different my life would have been had I not had Holden. I truly believe I would be a whole different person, and not a better person either. Having Holden has shaped me into the person I am today. I'm a little crazy at times, but I didn't turn out too badly.

I know the parent is supposed to shape the child, and I have in some ways. But, he's shaped me too. He taught me what true unconditional love is. He taught me how to put someone else first. He taught me to be tough no matter what. He made me fight for things that I never would have without him.

There was a time when he was my whole life, my whole reason for breathing. He gave me a purpose. He still does.

Seeing that 20/20 special last night made me realize something. Yes, he'll be leaving for college in a few months and yes, I will miss him terribly. But, I am so blessed to have had him in my life to begin with.

I will still cry tonight when he steps off that court, but through the tears I will smile.

"Don't cry because it's over. Smile because it happened."

What A Week

2009-02-09T12:13:00.002-05:00

Last week started out with an ear and eye infection for Riley. But, instead of running up his sugars he had lows that just would not come up.

He finally went back to school on Thursday. I really didn't want to send him. He still wasn't feeling all that great but there was no reason for him to stay home other than his screwy sugars. Being that he has Type 1 and screwy sugars come with the territory, I sent him.

I wrote a note to his teacher explaining what had been going on and that I needed to be called before Riley got insulin because I was giving him less than what the pump suggested. Also, I let her know that he wasn't really eating all that well.

Instead of being low he ran high all morning. He was 300 at lunch. I thought maybe the lows had passed. The teacher got Riley to give his insulin. Turns out she pre-bolused him and he didn't eat everything. Rather than calling me and asking me what to do she just let it go. So, of course, he was low a few hours later. He got juice and fruit snacks and actually came up this time.

Riley went to school again on Friday. His teacher called me before lunch and said that he didn't want pizza ( which is what he had ordered, Didn't want pizza? He must be sick.) She said she'd gone over the menu with him and he wanted a ham and cheese sandwich instead. She called to ask me the carb amount.

A couple of hours later (right after lunch) I got another call. (I was at a different school on Friday doing vision screenings. My cell would not pick up there so the teacher kept having to call me at the school. I'm sure the people there were wondering what was going on.) She said that Riley had accidentally dropped his pump and his site had come out. She wasn't sure if it happened before or after he'd received his lunch insulin. (The lunch insulin she'd given the full amount of without calling to check first to see how much to decrease it like I had asked.)

I had to leave and go to school to put in another site. When I got there I asked Riley if he dropped his pump before or after he gave his insulin. He said after so I assumed he got his lunch insulin. I found out his sugar was 84 at lunch. The teacher gave him the full amount of insulin (even though I had ask that she call me first). After the site change I checked his sugar. It was 134. I knew that he still had plenty of insulin on board from lunch. Plus, he tends to go low after a site change. So, instead of the usual 60% decrease I decreased his pump 80% and prayed.

At 2:30 I got another call from the teacher. Riley had been low for an hour and a half. He had gotten up to 83 at one point only to drop down in the 60s again. I had finished the vision screenings and was on my way home any way. She said they were having a pep rally and she was going to take Riley to that so I could pick him up in the gym.

On the way to the school I called his endo. She wasn't in the office so I called her cell. When she answered I quickly told her everything that had been transpiring over the last week and told her I was at the end of my rope and didn't know what to do next. I know I sounded like a blubbering idiot the way the words rushed out of my mouth.

She said that she did not know why but sometimes kids would go low like that. I explained to her that it didn't help matters that he had no appetite. She said that if he would not eat to give him sugared fluids. The key was to keep his sugar up enough that we could safely give insulin as to keep away ketones. She said that if his sugar was under 200 not to bolus for any food and if his sugar was over 200 to try only giving half the suggested insulin.

After I hung up I started to panic. I had decreased his basal 80%. Had I caused ketones? I couldn't wait to get to him and test his ketones.

I found him sitting in the gym watching the cheer leaders perform. Friday night at the basketball game was Senior night. So, just as I was arriving they called out all the Senior basketball players and cheerleaders. They called Holden out on the court. I'm not doing too well with all the Senior stuff as it is. I glanced over at Riley and he sat with a huge grin on his face. It should have made me happy, but instead I started to cry.

I started to quickly wipe away the tears hoping no one would see. Between all the low sugars and Holden's 18th birthday and the reminder that my son is a Senior and will be leaving for college next year I just couldn't take anymore.

I wanted to whisk him away so I could test his ketones but he asked to stay for the pep rally. As soon as it was over we left. I tested his ketones and they were negative. I breathed a huge sigh of relief.

Like I said Friday night was Senior night. Holden, Michael, and I walked out on the court while someone announced Holden's achievements and plans for college. I did pretty well. Tears welled up in my eyes when they presented to whole class of 2009, but I never actually cried.

Riley went low again at the ballgame, but not to terribly low. That's the good thing. Even though he's been going low, he's been hanging out in the 62-78 range. At least he's not going into the 40s and 50s and staying there.

After the ballgame we had a surprise birthday party for Holden. Riley's sugar was 73. I knew that he didn't need any insulin so I let him pick out his piece of cake without worrying to eyeball it to figure out how many carbs were in it.

Now, I don't know about you other parents, but when my kid gets to eat cake, he's almost giddy with excitement. He always scarfs it down. I say he does it because he's afraid someone is going to take it away from him.

I looked over and noticed Riley's plate sitting there, the cake only half-eaten. He said he couldn't finish eating it because his tummy hurt. That had become a common complaint, and one that put my mommy sensor on high alert.

Once home his sugar was still on the low end. I had to bribe him to eat something else.

By Saturday we were still celebrating Holden's birthday. We took he and his friends out to eat and to go bowling. We ate at a Japanese steakhouse. Riley loves that place and for the most part ate pretty well. He ate quite a bit of rice. His sugar was around 170 s0 I gave him less than half of the amount of insulin suggested by the pump.

Next we went to the bowling alley. While there Riley went low, 64. I got him to drink a juice and eat a couple of pieces of candy. After the bowling alley we went for ice cream. At the ice cream shop Riley was up to 84.

I let Riley pick out his ice cream and didn't stress at all trying to figure out how many carbs were in it because I knew we wouldn't be bolusing for it anyway. An hour after the ice cream with no bolus he was 124. He stayed pretty much in range for the rest of the night.

It was nice not having to stress about the insulin and carbs, but I kept a nagging feeling in the pit of my stomach. I thought I remembered reading in a blog a while ago that some one's daughter who was Type 1 started having low sugars before being diagnosed with Celiac.

I did what everyone does but shouldn't, I turned to my good friend Google. I found that the symptoms of Celiac include diarrhea (check), decreased appetite (check), irritability (check), abdominal pain (check), and the one that made me catch my breath, in those with Type 1, low blood sugars.

I kept my findings to myself for a while, but finally last night I let my fears spill out onto Michael. I told him that it was one thing that I had feared since Riley was diagnosed with Type 1. Type 1 is bad enough but when you throw another auto-immune disease into the mix that limits what foods can be eaten, it sounds almost unbearable.

So, for now, I continue to monitor Riley. I ask him at least 10 times a day if his stomach hurts. I'm keeping a log of what he eats and what his symptoms are. And, I'm praying really, really hard that this is just the effects of a bad stomach virus.

18 Years Ago Today...

2009-02-05T09:10:00.003-05:00

I lay in a hospital bed. I was a 17 year old girl scared to death. I was terrified that I was about to become a mother. I'd never even changed a diaper before.

I got pregnant when I was 16. When I first started thinking I might be pregnant I prayed and prayed that I wasn't. I asked God to give me a second chance. But, God had other plans. He took my wrong and turned it into something beautiful.

It took me a couple of months to come to terms with the fact that I was pregnant, that there was actually a baby growing inside of me. When I was 13 weeks pregnant I was walking down the beach when my left leg started to swell and started to hurt.

The next day I went to my obstetrician who thought it could be a blood clot, but because I was so young wasn't sure. He told me to go home and if it started to swell again and got red to come back. He would have to put me in the hospital.

A few days later my leg swelled up and became very, very painful. It turned red and warm. My mom took me back to the doctor. I will never forget that ride in the car. I was terrified that something bad was going to happen to my baby. I knew that the doctor said that if it was a blood clot they would have to put me on medicine. I was afraid of what that medicine would do to my baby. I cried all the way to the doctor, clutching my stomach. I remember telling my mom that if the medicine was not safe for my baby I would not take it. Being that I was my mom's baby she told me I didn't have a choice. I prayed all the way there that God would protect my little one.

I fell in love with Holden that day, way before he was ever born.

The rural town that I lived in didn't have the machines they needed to test for a blood clot. I was sent an hour away to another hospital. I was instructed to lie down all the way and keep my leg propped up on a pillow. If it was a blood clot and it moved I could die.

When I got to the hospital they stuck me 5 times to start an IV. Then, they did an ultrasound of my leg. It turned out I had a rather large blood clot in my left leg. It was blocking a vein and ran from my groin to my knee. I was whisked away in a wheelchair. My feet would not touch the floor again for 10 days.

I was hooked up to the medicine, a blood thinner, which had to be given in my IV. I was instructed that I was to get out of bed for no reason whatsoever. At the time I didn't know how serious it was. Now that I'm a nurse I shudder when I think how close I came to dying.

I was in a teaching hospital so I saw a lot of different doctors and interns every day. One day a young looking boy came in. I'm not sure if he was a doctor , a resident, or a medical student. At some point in our conversation he mentioned that it would be "easier for me" if I just had an abortion. If I had an abortion then my blood clot would go away. My little 16 year old self sat up in bed and told him to get out of my room and never come back. My mom went to the nurse's station and told them he was not allowed to come back in my room. I never saw him again.

After 10 days of lying in bed I was finally free to go home. I would have to be on blood thinners for the rest of my pregnancy. The oral medicine was not safe for pregnancy so I would have to take injections. Before I left home I was taught how to draw up and inject the medicine into my stomach 4 times a day.

A few days after discharge my leg started to hurt again. I went back to the doctor. My mom had realized that the strength of the blood thinner they had given me from the hospital pharmacy was wrong. It was too weak. My blood clot had come back and I was admitted back into the hospital for three more days.

Once home and on the right strength of medicine, I returned to school. I was a junior in high school. Since I was on my injections 4 times a day, I would enter a bathroom stall at lunch and take my shot. In addition to that I had to set my clock for 1:00 every morning and get up and take my shot and go back to bed. The medicine I was on, Heparin, was very unstable and had to be monitored closely. I had to go to the hospital every other day (including Saturdays and Sundays) and have my blood drawn. Since I was on blood thinner my arms were terribly bruised. I joked that I looked like a drug addict.

At some point early on I began to bleed. Once again my mom drove me to the hospital and I clutched my belly and cried and prayed for my little baby. It turns out my blood was way too thin and I was bleeding out in my urine, but my little man was OK.

Looking back now I wonder how we ever survived. I know it is only by the grace of God that I lived through it all and got the wonderful son that I did. I also believe everything happens for a reason. Up until my blood clot I didn't really think about my baby much. But, once he was threatened my Mama Bear instincts kicked in and I protected him with all I had. God took that opportunity to show me how important my son was. I went through a lot to get him here and once he was here I was so grateful to have him that I would do anything for him.

And, now, eighteen years later, I am so thankful that God chose me to be Holden's mom. I couldn't have asked for a better child if I'd have ordered him from a catalog. He has been a joy to me since the day he was born. I know that sounds like I'm stretching it a little, but I truly mean it.

He has always been strong and mature beyond his years. He has a good head on his shoulders and I'm often told by people how nice and respectful he is. He is a good boy. He makes good decisions. I am pleased with the people with which he has chosen to surround himself.

He is one of the only kids in his class who holds down a job as well as attending school and playing sports. He has awesome grades. He will be attending college in the fall with plans to become a physical therapist.

I could not be prouder of him. God has done a wonderful job molding him into the fine young man that he is today. I am just glad He let me come along for the ride.

Happy birthday, Holden. I love you with all my heart.

The Longest Hour and 34 Minutes of My Life

2009-02-04T13:08:00.005-05:00

Thank you guys for the well wishes. Riley is feeling better, but he's still home from school. If it wasn't for diabetes he probably would have gone to school today.

He's been having some crazy lows, lows that just refuse to come up. And, because he doesn't have much of an appetite it's hard to get him to eat or drink to bring them up.

Since he was diagnosed I have not been as scared as I was last night. He'd had a few sugars in the 70s and upper 60s at my mom's yesterday. They would come up with treatment but not much.

Holden had a basketball game last night. Riley was feeling pretty good and I didn't want to miss Holden's game. He only has a few left. We ate supper at the school. At supper Riley's sugar was 219. It was the highest it had been in a while. He still didn't have much of an appetite. He ate half of a cheeseburger and a cupcake. I put the carbs and sugar in the pump and gave him less insulin than what the pump suggested since he'd been going low so much.

An hour later he came to me and told me his sugar felt low. It was 49. He hasn't gone that low in a while. I got him to drink a juice box. I decreased his basal. And, I coaxed him to eat some chocolate chip cookies (because I knew he still had plenty of insulin on board from supper). He wouldn't eat all of the cookies because he didn't have much of an appetite.

20 minutes later he was 66. I suspended his pump and gave him another juice box. 20 minutes later, 77. I didn't give him anything else right then because I figured he would continue to rise a little bit from the two juices and cookies. 17 minutes later he said his sugar felt low again. (He had been lying down in the bleachers the whole time). His sugar was now 64. I didn't know what else to do except give him a 3rd juice box.

By this time he was beginning to complain of a full tummy. I'm sure all that juice sloshing around didn't feel so great. 15 minutes later he was 65. At this point it had been an hour since he was 49. All this time Holden's game was going on. I was barely able to pay attention to any of it.

I started to debate about using Glucagon but he wasn't too terribly low and I knew he wouldn't need a whole dose and I really didn't know how much to use. Plus, I didn't want to deplete his reserves in case he needed them later for a really, really low. So, I coaxed him to drink another juice box. Poor thing, it was all he could do to choke it down. I had to beg him to finish it.

15 minutes later he was 68. I know that's not a terrible sugar, but anything with an 8 in front of it would have made me feel better. He had been low for so long. I pulled out some fruit snacks. I got him to eat two of them before he started gagging and saying he felt like he was going to throw up.

I began to pray that he wouldn't throw up. I don't know what I would have done then.

20 minutes later he was 83. I finally started breathing again. He was able to keep everything down.

From the time he was 49 until he got up to 83 was exactly 1 hour and 34 minutes. He had consumed 76 g grams of carbs. He usually doesn't eat that many carbs in two meals combined. He had never ever come close to doing anything like that. I don't know what in the world happened.

I braced myself for the high that I knew was coming. I was thinking he'd most certainly reach the 300s and maybe even the 400s. The high never came.

30 minutes after the 84 he was 83. An hour later he was 162. I finally unsuspended his pump. 35 minutes later, before I tucked him into bed, he had dropped to 133. I decreased his basal. He ran at a decreased basal the majority of the night. He finally reached 233 at 4 o'clock this morning. I was actually glad to see it.

His sugar at breakfast was 145. 3 hours later it was 51. I had him drink yet another juice box. 20 minutes later he was 70. I made him lunch. For lunch he ate stew beef and rice and yogurt. He ate pretty well. But, fussed about having to eat all the yogurt. (He has to eat yogurt to try and combat the icky side effects he's having from the antibiotics he's taking.)

I put the carbs in the pump (45g) and put in a sugar of 60. I gave him less insulin than suggested by the pump.

As I was writing this I realized I should probably check him again. One hour after his insulin he's 65. What in the world is going on?!? He has .67 units of insulin on board. He's drinking another juice box and I've suspended his pump again.

I'm hoping we won't have another episode last night. Where has his liver been while all of this was going on?

(edit: 20 minutes after the 65 he was 63 and ate an Air Head. 25 minutes later he was 67. He is now munching on fruit snacks that he complained about having to eat. He usually loves fruit snacks. His pump is still suspended.)

Real People Sick

2009-02-02T21:16:00.002-05:00

Riley started throwing up around 12:30 Saturday night. It is only the second time in his life he's ever thrown up.

He got it all over his bed and covers so I threw those in the washer, Michael cleaned off the mattress, and I fixed Riley a spot on the couch. He continued to gag off and on, so Michael dragged our mattress out into the living room so we could keep a closer eye on him.

A few hours later he threw up again. I worried about lows, but he stayed pretty stable. First thing in the morning I brushed up on my sick day rules. Not only was this Riley's second time throwing up, it was his first time throwing up with diabetes in the mix.

He did OK for most of the day on Sunday. That was until lunchtime. He hadn't been sick on his stomach any more, but he just didn't want to eat. I finally got him to eat half of a peanut butter and jelly sandwich. You'd have to know Riley to know how strange that is. He has always been a big eater. He eats every single bite on his plate 99% of the time and then asks for more.

He refused to eat supper. I finally coaxed him into eating some apple sauce, but that's all I could get in him. He had taken a nap earlier in the day, which is also very out of character for him.

A little while into the Super Bowl he complained that his ear was hurting. I also noticed that one of his eyes was draining a little bit. I gave him some Tylenol for his ear. About an hour later he was lying on the couch crying and holding his ear. I gave him Ibuprofen and put the heating pad on his ear. He would lie still for a little while and then all of a sudden grab his ear and start to cry again. Eventually, the Ibuprofen kicked in and he took another nap.

This morning he went to the doctor. He has conjunctivitis and an ear infection. He's on an antibiotic and eye drops. He still does not have an appetite.

He's real people sick. This sickness has nothing to do with his diabetes. Yet, it affects it.

Because he's not eating much that's making his sugar go on the low side. And, we all know that to prevent ketosis he needs to get insulin in him. It's hard to get insulin in him when he won't eat.

After supper (he ate a few spoonfuls of spaghetti o's and a Reese's cup) we played a few games on the Wii. Then he lay down on the couch and went to sleep at 8 o'clock. Again, you'd have to know Riley to know how strange that is. He's not big on sleep. On school nights it's a struggle to get him in bed by 9.

Now, I'm sitting here trying to decide what the best route is to take so as to prevent nighttime lows. I want to let him sleep. His body is obviously tired. I don't think that even if I woke him up he'd eat a snack. I'm going to decrease his basal and go from there. I'll have to get him up at some point and check his ketones (they were small at one time but didn't last too long).

It's going to be a long night.

50+ Questions

2009-01-28T10:57:00.005-05:00

I found these questions on various places around the blogasphere. Feel free to play along if you'd like and let me know if you do. I'd like to read your answers.

1. What do you add to your coffee? Sweet n’ low and milk

2. What are you reading now? Killer Weekend by Riddley Pearson and When Mother’s Pray by Cherri Fuller

3. Do you own a gun? Nope, never have, never will.

4. Are you registered to vote? Yes and always exercise my right to vote that people fought and died for

5. Do you get nervous before doctor appointments? No

6. What do you think of hot dogs? I don’t like them but if I’m really, really hungry I can eat one.

7. Favorite Christmas Song? O, Holy Night

8. What do you prefer to drink in the morning? Coffee

9. Can you do push ups? Doubtful, I’m too lazy to even try.

10. What was the name of your first boyfriend/girlfriend? I was in 1st grade and his name was Mitch.

11. What’s your favorite piece of jewelery? Other than my wedding band/engagement ring it’s a jade ring that my aunt gave me when I was 16. My grandparents (her parents) gave it to her when she was 16.

12. Favorite hobby? Reading

13. Do you work with people who idolize you? Um, no I don’t think so. I don’t think anyone idolizes me.

14. Do you have ADD? No

15. What’s one trait that you hate about yourself? Have a hard time just relaxing and enjoying myself.

16. What’s your Middle name? Technically it’s my maiden name, but the middle name that my parents gave me is Elizabeth

17. Name 3 thoughts at this exact moment. When will my head ever stop hurting? Will Holden be able to practice tonight? How will Riley's sugars be at school today?

18. Name 3 things you bought yesterday. cheeseburger, french fries, Mello Yellow

19. Name 3 beverages you regularly drink. Mountain Dew , Crystal Light (or generic brand), grape juice

20. Current worry right now? Holden's knee

21. What side do you dress to? I don’t really know. I think either. (not even really sure what that means)

22. Favorite place to be? Home on my couch

23. How did you bring in the New Year? Home on my couch with my husband and Riley. Holden was in the other room with his girlfriend but came in to give me a kiss just after midnight.

24. Where would you like to go? To a tropical island, but one that doesn’t have a lot of people on it

25. Name three people who will complete this. Don’t know

26. Whose answers do you want to read the most? No one in particular.

27. What color shirt are you wearing? It’s a nursing scrub shirt: white background with different colored hearts on it.

28. Do you like sleeping on satin sheets? Couldn’t tell you, I’ve never done it.

29. Can you whistle? Yep

30. Favorite colors(s)? purple, yellow, green

31. Could you be a pirate? I’m too honest to be a pirate and I like bathing too much.

32. What songs do you sing in the shower? I don’t sing in the shower. I sing in my car, but it’s whatever song is on the radio at the time.

33. Favorite girls name? Lane and Savannah

34. Favorite boy’s name? Michael, Holden, Riley

35. What’s in your pocket right now? Cell phone, pack of gum, an antibiotic I need to take after I finally eat something

36. Last thing that made you laugh? Holden, it’s usually always Holden. The kid cracks me up.

37. Best bed sheets as a child? I don’t remember exactly. I’ve seen pictures of me sitting on a bed with Raggedy Anne sheets though.

38. Worst injury you’ve ever had? I broke my hand playing basketball my senior year of high school.

39. Do you love where you live? It’s OK. What makes it the best is it’s where my family (parents, grandmother) live.

40. How many TVs do you have in your house? Three, horrible, I know.

41. Who is your loudest friend? Judy

42. How many dogs do you have? One, Grace. She’s a pound dog. She’s nine.

43. Does anyone have a crush on you? Doubtful

44. What are the most fun things you ever did? Family vacations.

45. What are your favorite books? The Fountainhead, To Kill A Mockingbird, The Bible

46. What is your favorite candy? Reese’s cup

47. Favorite Team? Chicago Cubs

48. What songs do you want played at your funeral? It Is Well (With My Soul)

49. What were you doing at 12 AM? Trying to get to sleep

50. What was the first thing you thought of when you woke up? How lucky Michael was that his work had a one hour delay this morning.

51. Have you ever received an award? I received plenty of awards in high school. I received most of them for good grades. I don’t remember all of them. I remember receiving a Chemistry award for having the highest grade in Chemistry when I was a junior. I received a few sports awards for basketball too. At different times I received “Most Improved”, “MVP”, and “Best Offensive Player”. I haven’t received any awards since high school that I can think of.

52. How many browser tabs do you have open right now? five

53. Share a website with us. www.cutethingslaughing.com

54. Look at the wall to your right, what is on it? two windows, my front door, a shelf with a picture of Michael and I at our wedding on it and a candle.

55. Have you ever rescued/taken in a stray animal? Too many I’m afraid. The last one was a little kitten who we named Tom who was sick and had diarrhea all over the place. We took him to the vet and got him well and then he ran away.

56. When I say "Moo I'm a duck" do you think of a cow or a duck? a cow with a duck’s bill

57. If the Pillsbury Dough Boy got into a fight with Mrs. Butterworth who would win? And would anybody get hurt? Mrs. Butterworth would kick his butt. The Pillsbury Dough Boy is such a little mamsy pamsy. I’m pretty sure Mrs. Butterworth would put a hurtin’ on him (sorry, southern expression)

The Number

2009-01-24T16:45:00.007-05:00

By the time we arrived at Dr. M's office yesterday I had had decided that whatever "the number" was I'd deal with it and move on.

We went through the usual routine. Riley was weighed and he had his height measured. Then he pricked his finger and the blood was sucked up into something that looks like it should be part of his lego Star Wars collection.

Then, we waited. I wasn't really nervous. I knew there was no need to be. I knew his A1C wasn't any better. I was just hoping it wasn't any worse.

Dr. M walked in and gave me a tight little smile. I knew then that the number wasn't any better.

She went through the usual stuff. She asked about Riley's health and our family's health. She talked with Riley for a little while. She asked him if he was eating like he wanted to. He replied that he was. She asked him if he'd had any lows lately and he nodded his head. She asked what he did and how did he feel when he was low.

Her last questions was: "Riley is there anything that diabetes keeps you from doing that you want to do?"

His reply: "Nope."

This brought a little smile to my face.

Then, she looked at me and Michael. "His A1C is 7.9." I felt the tears build up behind my eyes. "Which that is in range for his age. It's under 8.0. But, I'd like to see it lower."

"Me too", I said. I had stifled the tears. There was no reason to cry. It wouldn't do any good. Plus, I didn't want Riley to see me cry.

She sat about looking at his sugars over the last two weeks. She saw the lows. But, there were also plenty of highs.

It's not like he was on the lower end all day and then dipped down too low. Usually, he was high and then went low.

Over-correction? Maybe. Diabetes just being it's sucky self? More likely.

We sat in her office over an hour with her pouring over his logs. She asked a million questions.

What does he usually eat? Can we add a little protein here? How often is school calling because of his sugars?

Riley had not gained any weight since his last visit. She looked back and said average weight gain in a year was about 5 pounds and that since last December Riley had gained exactly 5 pounds. She said we couldn't come back at the next appointment without him gaining any weight.

She suggested feeding him a little more food throughout the day. She asked where we thought we could add some carbs. She looked at his log and saw that his carbs were, by far, the lowest at breakfast. "Why don't we up his carbs here? You can give him more cereal."

I gave her a wary eye. I'm not big on low carb eating for my kid. But, over the years I have learned that the only way for Riley to have decent sugars in the morning is for him to eat lower carb at breakfast. By that, I mean he usually eats around 25g carbs at breakfast.

"I guess we can try it." But, I'm sure the way I said it Dr. M knew I was very skeptical.

She poured over his logs again. She saw his mornings numbers and decided that we shouldn't mess with the morning carbs.

I said, "How about this? How about I feed him when he's hungry?"

She smiled. "That sounds good. A lot of times in the most structured families this gets forgotten."

Sometimes Riley will come to me and tell me he's hungry. I often make him wait until it's "time for him to eat". Now, I'm not. If he's hungry, he eats. If it's an hour before dinner, he can have an apple to get him through.

I know it sounds horrible. But, for the sake of the numbers, I would give him some sugar free jello (no sugar, no carbs, no calories), which I'm sure did nothing for his hunger. Or, I'd let him eat a cheese stick. Again, when I'm hungry I don't want no stinkin' cheese stick.

In the midst of the diabetes and the numbers I forgot that he's a growing little boy.

So, after over an hour Dr. M made a few basal suggestions, but not many. She was almost just at stumped as me. Besides, now that he's having these lows, his basals need to be decreased some. And, with an A1C of 7.9 it's hard to decrease anything. It's not that I changed basals right before his appointment either. The last basal change was about 2 weeks ago.

"These lows come at very random times. It's hard to see where to tweak his basals"

"Tell me about it," is all I could say.

Before we left Dr. M told me to see what I could do with his basals and if I got frustrated to call her. She could at least listen and understand my frustrations, she said.

As I stood up to leave Dr. M said something that reminded me why we make a 6 hour trek to her office every three months.

I was pulling on my coat as Riley quietly played with toys in the corner.

Dr. M said, "Mom, turn around and look at your son. He's happy. And, he's healthy. You've done a great job. You have a healthy, happy kid."

It's very frustrating to work so hard, to pour so much time and energy into something and not get the results you were hoping for.

But, as I turned to look at Riley I realized I do have what I was hoping for. I have a happy, healthy kid. A kid who when asked said that diabetes doesn't keep him from doing what he wants.

I've got to learn to stop focusing on the number and start focusing on the big picture.

" Not everything that counts can be counted. Not everything that can be counted counts."

Those words are on a sign in Dr. M's office. I like them and am going to try to focus on remembering that not everything that counts can be counted.

Mommy Check Up

2009-01-22T19:55:00.000-05:00

Tomorrow is my "mommy check up". No, I don't have a doctor's appointment. Riley does.

We will make the 6 hour round trip to see his endo tomorrow. She will check his A1C. We get to see how well I've done as a mother of a child with diabetes.

His last A1C was 7.8. I was very disappointed because I'd been keeping him in the low 7s. Yes, he's had a few growth spurts that made his sugars go crazy. Plus, he would spike every single day at school, usually in the 300s. But, I should have been on top of it more than I was.

It wasn't until around Christmas break when I finally reigned in some of those highs. Then he was put on Prednisone. So, he ran high again for a while.

I've started logging sugars every day and looking for trends. I've been using Kevin's excel log book again. Today I printed out the past 2 weeks worth of sugars.

At first glance they look pretty good except for Monday. We took a 4 hour trip to see some basketball games. Riley spent 8 hours in the car. Then he sat and watched basketball for about another 6 hours. I expected highs so I increased his basals. It didn't work.

Finally, I decided it wasn't a movement problem but a site problem. He'd run high for several hours before I figured it out. If we hadn't of taken the stupid trip I would have caught it earlier. I just kept attributing it to his inactivity.

Like I said, at first glance the numbers look pretty good. His blood sugar average last week was 145. So far this week it's 174 (thanks to Monday). If you take Monday out of the equation it's 145.

I wish it was that easy to just take out the numbers we don't like....

Upon closer inspection and looking at the graphs and the numbers I realized that while the 145 looked good it wasn't really. He went low 6 out of 7 days last week. 6 out of 7!!!

How did I not notice until I printed it out on paper? How did I not realize the juice supply was getting low? It's amazing how I just lived through it all and didn't really take notice. And, it's scary.

So, I'm thinking now I need to decrease some basals. I'm going to wait until tomorrow and see what Dr. M wants to do.

At least he hasn't been low today. His high for the day ( as of 7:30 PM) is 158. His low: 81. Yes, it's been a splendid day. But, the day ain't over yet....

Sorry that this post is kind of rambling. I'm a little nervous about tomorrow.

I'm hoping for an A1C less than 7.8. If it's more than that I'm not sure what I'll do. I'll probably break down crying in Dr. M's office.

I know, I know "an A1C is just a number". I've said that to others before. When I see that someone else's child has a higher A1C, I don't judge. I just say "You know what, this disease is hard and dealing with growth spurts is hard. It will get better." When I read of an adult with a higher A1C I don't judge, I just think how hard all the juggling of every day life is and how much harder it must be with diabetes thrown in the mix.

But, when it's my child....

That A1C is more than just a number. Right now, for me, that number equates to good parenting. A high one means failure to properly care for my child.

But, by the same token, when Riley's A1C was 6.6 I wasn't patting myself on the back. I was worried that he ran low too much.

Because right now a 50 is not just a number. It's making my child feel horrible. It's depriving his organs of needed sugar. It affects the functioning of his brain.

And, a 358 is not just a number. I see it as nerve/kidney/eye damage. Damage that I'm causing. Damage that I can't get back.

I'll let you guys know how things go.

A Plethora of Pictures

2009-01-21T15:40:00.000-05:00

It's been a long time since I've posted any pictures. So, I decided to bombard you guys. Plus, I promised Chris some holiday pictures.

We'll start with the summer.

It was filled with a lot of days spent at a local beach club.

Some T-ball

Some goofiness

A trip to Ocracoke which included seeing the wild ponies.

Riley's first ride on a ferry.

Of course he went low from the excitement.

And a dip in the ocean.

October brought a "celebration" of Riley's 3rd D anniversary with a trip to the movies and Riley's favorite restaurant.

As well as Holden's last school homecoming.

Next, Holden attended Snow Ball with his girlfriend of almost 3 years, Brittaney.

Riley's school Christmas party. (notice the ever-present sugar machine)

Next, came Santa.

Riley's stuff.

Holden's stuff.

Santa's stuff (which included water for the reindeer)

Playing the Wii...

Some more gifts...

"Stop looking at me swan!"

I recently wrote of the demise of Riley's beloved fish Nemo. This was Riley's ode to Nemo.

We've been home the last two days for snow days. I've been sick both days. This morning I got up and made Riley breakfast and went back to bed. When I got up he took me in his room to see what he had done for me. And, somehow, I started to feel better.

Pumpy the 8th

2009-01-16T08:29:00.005-05:00

Riley's 8th pump will be delivered today.

Wednesday night it alarmed that the battery was low. It was a surprise since it hadn't been that long since I'd changed it.

I removed the battery cap and pulled out another wet, soggy battery. This is the same thing that happened last time.

I cleaned out the battery compartment and popped in a new battery. I went through all the rewind/prime stuff and the pump was working again.

I tucked Riley into bed and called Animas. A few minutes later I got a call from a very nice rep. She got me to unhook Riley and go through all the trouble-shooting stuff.

She had me inspect the pump and when I did I noticed several cracks in the battery compartment. That explained the wet battery. Riley wears his pump in the bath, so water had seeped in earlier that night at bath time.

She advised me not to use the pump and to go to our back up plan. But, as soon as I was off the phone I hooked Riley back up. Unless the thing dies I'm not going back to injections.

While we may have had 8 pumps in a little less than 3 years, there has only been one that completely died and we had to go back to injections for a day.

Before the lady got off the phone she went through the instructions about how we would receive the pump and how to return the old one. I just let her talk. I didn't tell her that I was a pro at getting new pumps and returning old ones.

We've had this pump longer than any one pump so far. I looked back at my post and we got this current pump in September of 2007. We've had this one long enough that the OK has worn off of the button.

Next March it will be time to renew the pump because the warranty will be expired. I just hope this one lasts until then and there won't be a Pumpy the 9th.

(While we're on numbers, I just noticed this is my 401st post. That's a lot of complaining about diabetes.)