Thursday, December 17, 2009

Going Solo

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.

Wednesday, December 09, 2009

What if....

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.

Friday, December 04, 2009

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

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.

Thursday, December 03, 2009

Sometimes You've Just Gotta Let It Out

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.

Thursday, November 19, 2009

Three Years Free Turns Four

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.

Thursday, October 29, 2009

All In Due Time

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.

Tuesday, October 06, 2009

4 Years In

  • 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

Friday, October 02, 2009

I want it so badly I can taste it

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

Wednesday, September 23, 2009

Pumped Up

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.

Monday, September 21, 2009

Look Ma, No Pump!

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.

Tuesday, September 08, 2009

Diabetes Is Expensive

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.

Monday, September 07, 2009

Labor Day Meme

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.


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.


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.

Monday, August 31, 2009

Where Do I Start?

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.

Monday, August 10, 2009

Back to School Stress

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.

Monday, August 03, 2009

Update on Mom

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.

Thursday, July 23, 2009

Pray for My Mom

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.

Friday, July 17, 2009

Stop and Smell the Roses and All That Stuff

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.

Monday, July 06, 2009

Graduation Pics and More

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)

Wednesday, June 24, 2009

What's Up?

** 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!

Tuesday, June 09, 2009


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.

Friday, June 05, 2009

This Is It

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.

Friday, May 29, 2009

Oops, I Did Again

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?

Wednesday, May 27, 2009

Odds and Ends

** 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."

Monday, May 25, 2009

One of Those Days

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.

Friday, May 22, 2009

Field Day Update and Sappy Post

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.