FULL REWIND REQUIRED

Riley had been running high for a while. He would come down a little with insulin, but not as much as I thought he should. He woke up with a sugar of 222 this morning. That’s pretty unheard of for him. But, he had lasagna for supper last night, so I chalked it up to that.

I arrived in the office at 12:30 and picked up the phone to call my mom. Her first words were, “He’s still high.” I told her I’d be there soon to change his site. I’d rather be safe than sorry.

I got to my mom’s, sat down on the couch, and called over Riley. I pulled out his old set. I couldn’t find anything wrong with it. It looked fine to me.

I filled the cartridge with insulin and tapped out all the bubbles. Then, I went to prime/rewind on his pump menu and hit “OK”.

I scrolled up to “rewind”. It flashed across the screen “FULL REWIND REQUIRED”. Every so often, his pump requires that it rewind the whole way. His pump will hold 200 units. Riley only uses 9.5-10 units a day, so there’s no need to fill it all the way. I usually only rewind to about 75. It doesn’t take as long that way.

As I sat there listening to the whir of his pump and watching the arrows flash on the screen, I thought, “Hmm, why didn't God give us a rewind button?"

What if I could rewind back to before Riley had D, back to when life was simple?

I really don’t remember what life was like before Riley got diabetes. I don’t remember not thinking about what he ate or when he ate, or even if he ate. I don’t remember not getting up two or three times a night to check on him. I don’t remember going to work and not calling my mom all day to check on him.

It’s a defense mechanism I guess. It helps to take some of the sting out of it.

The whirring stopped and I heard a beep and my attention was again returned to the pump. I primed it and swabbed the area with IV Prep.

I cocked the inset and held it up against Riley’s skin. He flinched as the spring released and delved the needle into his flesh. I held it there a few seconds and pressed down a little. Then I pulled back on the device. And, out came the needle and the canula with it. “Darn it!!!”, I shouted. It didn’t stick.

I got a tissue and held it to where the blood was trickling out. It seemed to take forever to stop bleeding.

Then, I went through the routine again with a new set. Placed it against the skin, deep breath, released the spring, and, this time it stuck.

I bolused for his lunch he had just eaten and cleaned up what was left from the site change. Then, I leaned over and gave Riley a kiss on the cheek and explained that I had to go back to work.

He looked at me and said, “Now I’m going to go low.”

“What did you say?”

“I’m going to go low.”

“Why do you say that?”

“Because sometimes when you change my needle, I go too low.”

He’s right. It’s just something that happens. A 60% decrease in his basal for 3 ½ hours and a decrease in his meal bolus usually does the trick. But, he still usually has at least one time during that day that he has to have fruit snacks to keep him from going too low.

As smart as he is and as proud as I am that he knows this, I turn away as the tears well up in my eyes.

“It’s just so unfair!”, I think to myself. “He shouldn’t know that! He shouldn’t have to worry about things like that!”

But, he does.

And, now, I know why God doesn't give us rewind buttons.

I don't know how Riley got this disease or why. If I were to go back in time, it wouldn't prevent him from getting it, it would just delay it.

To fully get rid of this disease a full rewind would be required.

And, I'd rather have the Riley with the carbs and the pump and the midnight needle sticks than to have no Riley at all.

A part of me

I have been inspired by Kerri and Nicole, whose significant others are so sweet they’ll give you a cavity, to write a post about my sweetie.

I know I don’t tell him nearly enough how much he means to me. I take so many things for granted.

Like, the fact that if I happen to groan when I roll over in bed, he always asks me if I need anything. And, if I do need (or want) anything, he’ll get up and get it, whether it’s when we first go to bed or at 3 o’clock in the morning.

Or, the other night, I accidentally got his pillow by mistake. As I lay my head down on it, I commented on how nice and soft it is. He immediately responded with, “You can use it if you want to.” He said this knowing that my pillow is as flat as a pancake and he probably wouldn’t sleep a wink if he used it, because he loves fluffy pillows. But, he would have given it up to make me happy.

Or, the poems he’s written me over the years. Or, the flowers he brought home a couple of nights ago, just because. Or, the wonderful father he is to both the boys. Or, the way he looks at me sometimes like he did when we first met. Or, how whenever someone asks him to go out after work, he tells them he’d rather go spend time with his family. Or the way he makes me feel like I’m the most attractive person in the world even though I still have my pajamas on and my hair is sticking up all over the place.

He makes me feel safe. He makes me feel needed. He makes me feel wanted.

He helps make me, me.

I love you, Michael Alexander, like a whole lot.

Fun with music

A little while ago a lot of you posted this meme. I wasn't in a very fun mood at the time, so I skipped it.

I decided to do it today, just for fun.

The rules are: put your Ipod, MP3 player, or computer music program on shuffle and answer the questions with whatever song pops up.

What does next year have in store for me? Lips of an Angel--Hinder (huh?)

What's my love life like? 18 and Life--Skid Row ("Your crime is time and it's 18 and life to go" Well, I was hoping to be with Michael for the rest of my life.)

What do I say when life gets hard? Drain You--Nirvana (Yes, it is very draining sometimes.)

What do I think of on waking up? Kiss--Prince (Funny, Michael usually wakes me up with a kiss every morning.)

What song will I dance to at my wedding? Mama Kin--Aerosmith

What do I want as a career? Money Maker--Ludacris (Now we're talking!)

Favorite place? Zero--The Smashing Pumpkins

What do I think of my parents? At Last--Etta James (That would have worked out better if I could switch that with my wedding song answer.)

What's my porn star name? Straight To Hell--Drivin' N' Cryin' (Is that a sign or what?)

Where would I go on a first date? Wishing Well--Terence Trent D'Arby (And, I know just what I'd wish for.)

Drug of choice? Swim--Bush

Describe myself. Testosterone--Bush (Well, I didn't really think I was all that manly looking.)

What is the thing I like doing most? What I Got--Sublime (The perfect answer!!)

What is my state of mind like at the moment? Billie Jean--Michael Jackson

How will I die? Waiting on the World to Change--John Mayer ( I hope not.)

Well, that was fun. Feel free to play along if you'd like.

One more thing

One more thing about the badge in my sidebar. You can also put it on your blog or web page or wherever you'd like. Just go to the sidebar and click on "Get this badge".

Thanks!

Six degrees of seperation

I got an email about this, but I didn't really pay much attention to it until today.

The email was explaining a way to have people donate to the charity of your choice. (This was started by Kevin Bacon, thus the name.) So, I got to thinking, why not give it a shot? Even if I don't get any donations, I won't be any worse off than I am now.

The charity I chose is The Iacocca Foundation. If you would like to donate, please click the link on the blog.

The people that raise the most money will get $10,000 donated to their charity. $10,000 to go to research to find a cure for diabetes, wow that would be great.

If you would like to fund your own charity you can do so by going to Network for Good.

Test strip update

Since I last posted, I have gotten the strip problem straight, for now.

Not long after I wrote my last post, I found a medical equipment company to get the strips from. The man there was very knowledgeable and very helpful.

I went and picked up 250 Freestyle strips this afternoon. From now on they will be mailing me 350 strips every month.

And, I no longer have to pay up front. They called my insurance company and found out I'd met my deductible. (Yeah, like the very first day that the plan started.) And, they are just going to send me a bill for my 10%. That means I got 250 strips today for $20.00. Woo hoo!!!

But, you know what the best thing is that happened today? I found out what a great community the OC is. I had a couple of people to email me and offer to send some strips to get me through. I can't tell you how much that means to me.

I am honored to be a part of such a wonderful group of people.

I'm still really, really tired, but now it's a happy tired.

P.S. George, I'm really hoping you win the lottery.

Tired

I’m tired, just plain tired.

I really, really, really need a good night’s sleep. Michael and I have been getting up 2-3 times a night to check sugars for the last 16 months. And, there’s no end in site. You see, if I don’t have the alarm set to get up and check sugars, then I won’t sleep anyway because I’ll lie there and wonder what his sugar is all night.

I’m so tired I’ve slept through the alarm a few times. Evidently, I’ve been hitting snooze over and over again in my sleep, because eventually the alarm will wake me and it will be 30 minutes or so later than when I meant to get up and check.

But, it’s a necessary evil. We still have occasional nighttime lows. And, here lately, nighttime highs. Two nights ago we kept getting up and bolusing sugars in the 300s. Finally, at 5 AM I decided I’d had enough. As much as I hated to, I changed his set. (I found out he had a bent cannula)

Riley awoke to the stick of the needle and started to cry. When will it ever end?

Also, I’m mentally tired. Not from the numbers, but the other aspects of this disease.

I am still fighting a battle with my insurance company, a battle that has been going on for almost 5 months now.

I’m still having trouble getting Riley’s strips. I am able to get his 150 a month just fine. They are billed under pharmacy. But, the others I need every month, that’s another story. The rest of strips are billed as DME (Durable Medical Equipment). Don’t ask me why. It makes no sense.

The ones I get under DME I have to pay for up front (around $250), then the insurance is supposed to send a check to reimburse me for what is covered (90%). But, I have yet to get reimbursed for any strips that I have purchased since October 1st. And that, my friends, is a whole lot of freaking money.

I have been given several reasons why I haven’t received the money yet. The last reason is that the strips were purchased out of network, so now I may not get any of the money back.

I have someone working on getting me my money. But, in the meantime, I had to find a pharmacy that is in my network.

I went to this pharmacy yesterday (after calling Dr. M and getting all the paperwork faxed that I would need to get these strips), and was told that the insurance was denying the strips saying I needed prior authorization. This is how all my trouble started in October.

I tried to explain to the pharmacist that I did not need prior authorization and that he needed to bill it as DME. He just looked at me with this dumb look on his face. He called Medco (who handles the pharmacy benefits), but I told him to call the State Health Plan (who handles DME). He wouldn’t do it. And, there is not another pharmacy in my town that is in-network. (My wonderful pharmacist who I have been using for years is in the process of filling out all the paperwork, so he will be in-network.) But, until then, I’m stuck dealing with incompetence.

So, I have a call in to a lady at the State Health Plan to try and get her to explain to the pharmacist how to put the strips in his computer, so they will go through and I can get them. Until then, I’m running dangerously low on strips and may have to purchase even more with my own money.

Tears are streaming down my face now, hot tears of anger and frustration.

I feel so helpless. What else can I do? No one seems to want to listen to me when I explain to them why it's so important that I get these strips. I've written letters, the ADA has written a letter, but it's all falling on deaf ears.

Sometimes I look at people and wonder why they don’t fight for what they need. Why do they just roll over and play dead? But, now I know.

They’re tired, just plain tired.

My dance

I remember it like it was yesterday.

I felt a funny feeling in my rather large belly. Not really a pain, but more of a tightness. It was 6 AM. I lay in bed for an hour. The tightening was starting to get a little more painful and was now coming at 5 minute intervals.

Finally, at 7, I got up and told my mom. I pointed to my stomach and said, "I think it's time."

My dad was in the shower. My mom went and told him it was time to go to the hospital, but he didn't believe her. He went through his normal routine.

His face turned pale when he came out and saw me sitting on the edge of the bed holding my belly and panting.

I got up and got dressed. I put on make up and curled my hair. (I know, what was I thinking?)

Then, it was off for the hour drive to the hospital. I felt every little bump in the road. Every time I moaned a little my dad would speed up.

Finally, we arrived at the hospital around 9 AM and I was settled into the room.

It was a long day. Someone was in the room with me all the time. But, there was one time when everyone had gone somewhere and I was all alone.

And, I panicked. The enormity of what was about to happen hit me like a ton of bricks. I didn't think I was ready for this, not the labor itself (although I wasn't ready for that either), but I wasn't ready to be a mom. I was scared to death.

Finally, at around 7:30 that night I started pushing. And I pushed. And I pushed. And I pushed. I screamed some and I pushed some more. Then, I screamed some more. One of the nurses grabbed my face and squeezed.. hard. She told me to stop screaming and to breath. I was confused, didn't you have to breath to scream?

Finally, the Dr. came in. He kept telling me to push.

"Come on Penny, one more push."

"Come on Penny, one more push."

"Come on, just one more."

Are you starting to see a pattern here? I stopped believing him. I remember at one point I said , "I can't do this." He assured me that I could. He was right.

At 8:42 PM the pushing stopped.

He was here. He was perfect. He was mine.

I had wondered if I really had a purpose. People treated me like I didn't. After all, I was just another pregnant teen. But, the moment they laid him in my arms, I knew why I was here.

I was made to be his mom.

I took him home and I loved him with love that I never knew existed, pure, unconditional love.

Nothing else mattered to me, but him. He was my life. He was my heart. He was my inspiration.

I've loved him for 16 years now. I've tried to be a good mom. I've tried to lead by example. I've tried to be his teacher. But, I think he's been mine.

We've been through a lot, just the two of us. Many times when I wanted to give up, I'd look into his little face and find my motivation to go on, my motivation to be a better person.

I can't imagine my life without him. I don't know where I'd be had I not had him. But, I do know this, I wouldn't be happy. I couldn't be. A part of me would be missing.

If someone had told me when I was younger that I would get pregnant when I was 16 and that the father would leave me to raise the baby all by myself, I would have told them they were crazy.

I would have done whatever it took to stay on the path I had chosen. I was going to college. I was going to be a nurse. A baby was not in the plans and I wouldn't give up my dreams.

But, I didn't know. I thought his "sperm donor" and I would get married. I thought we'd be one big happy family with the white picket fence.

I'm so glad I didn't know. I would have changed it and I wouldn't have one of the best things that has ever happened to me.

He's my baby and I love him more than life itself. I've always told him he's my dance.

"Now I'm glad I didn't know,
The way it all would end,
The way it all would go,
My life is better left to chance,
I could have missed the pain,
But, I'd of had to miss.....the dance."

Happy birthday Holden! I love you!

Perfect Post Awards

Thank you Julia for awarding me with a Perfect Post Award for Because I Have To.

I'm truly honored.

Because I Have To

It was 4:30 in the morning. I heard a voice coming from the other room.

“Daddy?”

I nudged Michael to wake him and told him Riley had just called him. He immediately got up and went to see what he wanted.

Upon entering his room, Michael hears, “Daddy, will you check my sugar?” When Michael told me this, I sat up in bed. This can’t be good.

A few seconds later, I heard the Freestyle Flash beep and Michael called out, “It’s 55.”

Michael went to get some fruit snacks and some peanut butter crackers. Before, I could move I heard Riley’s voice again.

“Mommy, will you come hold me?”

I got up and sat on the foot of his bed and he crawled into my lap. About that time Michael came in with the snacks.

He sat there and slowly chewed the fruit snacks and then 2 peanut butter crackers. I noticed he was shaking. When he was done eating, I held him like a baby and wrapped the blanket around him. He lay there shivering with his eyes closed. I began to rock him back and forth.

I looked up and caught a glimpse of us in his TV. Me sitting there rocking back and forth with my sweet boy in my arms waiting for the sugar to take hold and start to work.

And, the sadness I’ve been keeping at bay for the last couple of months reached up and slapped me in the face.

I just stared at the two of us and wondered how in the world we got to this point and if it would ever end. Really, one of my first thoughts was, “Is there really ever going to be a cure?”

Riley’s sugar went up to an acceptable number and I lay back down in bed. But, it was a while before I was able to sleep again.

And, all day today, the image of us in the TV keeps popping in my head. My emotions have been a mixture of sadness and anger.

I’ve been so busy the last couple of months. Today I realized that it hasn’t been by accident. When I’m busy, when there’s always something going on, I don’t have time to dwell on his diabetes.

Don’t get me wrong; it gets plenty of my attention. But, I don’t dwell on it. I test, correct, and treat lows now without really batting an eye. Then, I move on to whatever task is at hand.

Today I realized what’s really going on. And, it’s one reason I was having trouble writing any posts.

I can be a little stubborn. OK, that’s not entirely true…I think Michael actually compared me to a bull one time (or 20, but who’s counting?). It’s one trait that Riley got from me. God help him.

Over the last couple of months if diabetes started to get to me, I’d push it aside. I didn’t want to think about it. I didn’t want to bring up all those emotions. Like I said, I did what had to be done, but I didn’t think about the emotions that come along with it.

I’m stubborn enough that if a bad thought started to enter my mind, I’d run it off.

I think that’s why I haven’t written a true diabetes post in a while. I didn’t want to dredge up all that emotion. I didn’t want to deal with it.

There was the time, when his sugar was 34 and after I gave him a whole pack of fruit snacks, he kept crying and begging for more. I’ll never forget that look on his face, the look of helplessness he had. He just kept pleading with me to give him some more. But, I knew if I did that what the end result would be. I knew he felt horrible. I knew the fruit snacks would begin to work, but Riley didn’t. He looked scared. He was looking to me for help, and all I could do was try to assure him he’d feel better in a few minutes.

At the time, I pushed it aside. He lay on the bed and I stroked his hair until he felt better. But, I never really felt the situation. I just lived through it.

Or there’s the time a few days ago when I changed his needle and when I gave him his bolus, he began to cry. With tears streaming down his face he said, “My needle burns.” I hugged him until he felt better. But, once again, I didn’t give it much thought.

Or there’s the times when he mentions a cure. Or when his eyes light up when another boy with D walks in the room. Or the times when he’s in the 300s and he’s hungry and upset.

I push my emotions aside because I have to. I tell him he can’t have any more fruit snacks, because I have to. When his needle burns I pat him on the back and tell him everything will be OK in a little while because I have to. I tell him that I hope one day there will be a cure because I have to. I pretend not to notice that he loves to be around other people with D because I have to.

Every once in a while, I have a day like this because I have to.

I had to pull off on the side of the road today. The tears in my eyes were making it hard for me to see where I was going. All the emotions I had kept inside came pouring out.

The unfairness of it all; the heartbreak I have for my child. The anger I have that this disease decided to take up residence in his body and the fact that there’s not a damn thing I can do about it.

But, I know that tomorrow, I'll go back to the way things were. I'll test his sugar, I'll count carbs, and I'll bolus, all without giving it a second thought.

Because I have to. I just have to.

Mean People Suck

I said a few days ago that I haven't felt like posting anything recently. But, some events over the past few days have really bothered me and so I was inspired to post something once again.

First, I want to preface that sometimes I say "you" in this post, but I don't really mean, you the reader. I think most of you are very nice people. Also, if I'm talking about you specifically you'll know, because I'll mention you by name (or the only way I know to identify you)

As most of you know, who read my blog regularly, I love basketball. This time of year A LOT of my time is spent watching basketball. Michael is the assistant coach of both the JV and Varsity basketballs teams at Holden's school. I am the stat keeper for both teams.

We played a team in our conference Friday night. We had played them once before this year and had won. It was an upset for them. They were supposed to kill us.

There is one boy on the Varsity team that is a really great player. J averages about 20-25 points a game. Sometimes when teens (and sadly, adults) are that good at something, they are cocky and usually not very nice to others on the court. J is not that way. He just loves basketball and goes out to play to the best of his ability.

When they announced the starting lineup for our team, the opposing team's crowd booed J. They didn't boo everyone, just him. First, that got to me. But, then it got worse.

They started the game, and every time J touched the basketball the crowd started to boo, loudly. Whenever he threw the ball to someone else the booing stopped. I was so mad I was about to cry.

What is wrong with people? He's just a high school kid. Why do you want to be mean to anyone, especially someone you don't even know?

My personal opinion is that most people are so self-absorbed that they don't really ever think about other people's feelings. They don't really care if it hurts anyone else as long as it makes them feel better.

And, that's another thing, why does it make you feel better? Do you really need to pick on a high school kid to make yourself feel good? If so, there is something really wrong with you.

Eventually, the crowd stopped booing. But, then our own parents started up. They were sitting right behind our player's bench. Most of the time that J touched the ball, one of them would start yelling at him to dish it off and stop trying to do everything himself.

First off, why in the world do you want to harass a player on your own team? Secondly, he's really about the only one on the team who can play decently.

If he was a ball hog I could see why they might do it. Not that it would make it OK, but I could better understand their motivation. But, he's not. He not only scored 26 of the 52 points scored by the team, he also had triple the amount of assists of anyone else on the team. That meant he dished the ball off plenty and others scored because of it. There was one game where he had over 20 points and he had 9 assists.

The only motivation I can think of is jealousy. They were jealous that their kid wasn't scoring most of the points. They need to stop comparing their kids to J. They need to focus on the good attributes that their kids have and quite comparing them to someone else.

What makes people act that way? When are people going to learn that it's not about them and their feelings all the time? If people would stop comparing themselves (or their kids) with others life would be much simpler. I just don't understand why you can't be yourself and let others be themselves. Even if you don't agree with the way other people live their lives, why do you feel the need to condemn them and belittle them? Why do you care? As long as society is not suffering because of the actions of these people, keep your mouth shut.

This brings me to the second part of my post. Like I said, the first incidence happened on Friday. I never really thought to post about it, because I didn't really think any of you would care.

But, I read this post today and my anger flared once again. Not because of the post itself, but because of a comment made to this post.

This is not the first comment this person has left, but it was kind of the straw that broke the camel's back for me.

First, let me address the anonymous issue. If you are so sure that Allison is such a horrible person then why are you so afraid to let anyone know who you are? If you're going to be mean to people, you should at least own your meanness.

Secondly, not to sound cliche, but if you don't have anything nice to say then....don't say anything at all. I don't expect you to like everyone, but if you don't, why can't you just keep it to yourself? Why must you try to hurt people's feelings? It's just mean.

Maybe you're saying I shouldn't get involved. It's really none of my business. But, that's another problem these days. Unless something directly effects them people just don't want to get involved. I know Allison doesn't need my help. I think she's done a fine job responding to Mr. or Mrs. Anon all by herself.

Anonymous, if you're reading this, back off. She's just trying to make her way through this world like everyone else. Try focusing on what you can do to make yourself a better person and quite critiquing everyone else.

Hi

Dear Reader,

I’m still around and still reading all of my usual blogs. I haven’t really had time to sit down and post lately. Nor have I had the desire, to be honest.

Things around here are pretty good. Riley spends most of his time playing Lego Starwars or playing basketball in the living room. His sugars have been doing good. I've found that I don't really think about diabetes much anymore.

Holden is still playing basketball. He’s doing well with that and his grades. He’s in the middle of midterms right now. He’ll be turning 16 in a few weeks.

I just wanted to write a little note to say “hi”. I’ve been thinking about this blog a lot lately. I’m wondering if maybe it’s served its purpose. I don’t know. We’ll see.

Take care.

Love,
Penny

Delurk please

It's delurking week. (Yes, I know the week's almost over) So, if you read this blog regularly and don't comment or you've just stopped by, or you got here by some weird google search like "shaved armpits" (yes, I'm sad to say someone found my blog by searching for that), leave me a comment. Let me know how you got here and if you like what you see. Delurk! I dare you.

And, I finally got over my stubbornness and switched to the new blogger. We'll see how that goes.

Everything's beige

Just wanted to update you to let you know that Riley is much better now. He hasn’t had any ketones since late Saturday afternoon. He hasn’t had any temperature since then either. His appetite has picked up and his sugars are starting to even out a bit. They did well yesterday until about 5 PM and then they ran high for about 5 hours or so. Then, at 1:30 this morning, he clocked in with a 51. Go figure.

Anyway, he’s better now. Thank you all for your thoughts and good wishes.

Why purple is no longer my favorite color

I'm thinking it all began around 12 AM Friday morning. Riley woke up to use the bathroom and started crying. He said his legs hurt. A quick check of his legs revealed no swelling, bruising, or anything out of the ordinary.

Michael put him back to bed, but within minutes, he was crying again that his legs hurt. Now, you have to understand, Riley hardly ever cries. If he does cry, it's usually because he's upset with his brother. He really never cries about pain. My office is in a health department. I hear kids crying all day long when they get their baby shots. Riley has NEVER cried while getting a shot. Even when he was a little baby. Pain just doesn't seem to affect him the way it does others. So, when he wouldn't stop crying that his legs hurt, I knew something was wrong. I just didn't know what.

I told him to come into our room, and he was limping. I let him crawl into bed with us (which I don't normally do) until he fell asleep. After he'd been asleep for a while, Michael picked him up and put him back into his bed. In a few minutes, he was crying again. This time I got up and gave him some Motrin and lay in his bed with him for a while. He slept the rest of the night without incidence. His sugars ran around the usual during the night. Nothing out of the ordinary. But, at 6:30, it was 102 and at 8:15, it was 149. That should have been my first clue.

I don't work on Fridays, so I was home with him that morning. He woke up and started playing his xbox. He said his legs were better, but his lower back was hurting. Hmmm, strange.

I fixed his breakfast and instead of scarfing it down like he usually does, he just sat there and stared at it. Then, he started to shake and asked for a blanket. When I went to wrap him in it, I brushed against his forehead. He was burning up.

I checked his temperature and it was 102.2. I started to feel panic rising up into my throat. My first thought is that he has a UTI, thus the back pain. Also, he'd had a cough that had been coming and going over the past week. Could it be pneumonia? Now, I really started to panic. I got my stethoscope and listened to his lungs. They sounded fine, so I didn't think that was the problem.

He started begging me not to make him go to the Dr. But, within minutes I was on the phone with his pediatrician's office. I made an appointment for an hour and 45 minutes later. We live an hour away from his ped., so it was a mad rush trying to get ready and get there on time.

Riley slept almost the whole way there. We didn't wait long once there. I made sure to stress with the Dr. about how he never cries and how he cried about his legs. Being a nurse, what I was thinking could be wrong was not pleasant and I was trying to force the panic down that was about to bubble out.

First, he said he was going to get Riley to pee in a cup. (which is exactly what I wanted done) Then, he decided to forgo that and do a CBC (complete blood count), which I was even happier with, since a normal result would dispel the fear I had creeping up inside me.

Before he did any of that, he listened to his lungs and looked into his throat. All which checked out just fine. But, then he looked into his left ear and asked Riley, "Does your ear hurt, bud?" To which Riley said no. "Well, you have a pretty bad ear infection there." I sort of let out a sigh of relief. Now, we knew the problem. He said his right ear was pink also.

They did the CBC, just to be sure, and everything came back fine. The achy legs and back probably just came from the increased temp. On the way out the door, the Dr. asked if Riley was allergic to anything. (We go to a very large peds. office with about 10 doctors in it) I replied with, "I don't know. Other that insulin he's never taken anything prescription." I could tell by the look on his face, he didn't even know he had D. "You mean he's almost 5 years old and has never had to take an antibiotic before?" Yep, never. Holden was a whole different story. He kept an ear infection when he was younger. Kind of ironic that my child who depends on medicine to keep him alive is otherwise as healthy as a horse. (Exactly where does that phrase come from? Don't horses get sick?)

I left the office with a prescription for Amoxicillin. By this time, Riley was hungry. We went to McDonalds (his choice, not mine) and while there I took him into the bathroom to check ketones. Even though his sugars hadn't been out of control, I thought I'd check to be on the safe side.

As soon as the urine hit the stick it turned a deep shade of purple. The panic started to rise again. We'd never had ketones like that before. I immediately called Dr. M's cell phone and left a message letting her know what was going on. She called back within about 2 minutes to reassure me and started her speech about what to do.

One of the first things she said was, "Don't trust the pump." She told me to keep his basal the same, but to give all of his boluses by syringe. Since he was spilling ketones it was very important that he get the insulin he needs. The only way to be sure that he was getting his insulin was by syringe. It made sense to me, but I didn't like it. I hadn't given Riley an injection since he started on the pump in March. When I told Riley about it, he didn't like the idea either. But, since then, he's been getting most boluses by syringe.

Even though I know he's getting his insulin, his sugars are still pretty much through the roof. His lowest sugar since all this started was 124, but that didn't last long. His next sugar was 220, then 349. His highest sugar has been 483. The average of all his sugars yesterday was 247. Yuck,not a good number. Thankfully, he doesn't seem to feel too bad. He did sleep more yesterday than usual, but for the most part, he seems to feel OK.

I started following Dr. M's instructions and by 5:30 last night, his ketones were negative. When he went to bed last night they were still negative. But, this morning the stick turned that darn purple color again.

To top it off, he was due for a set change this morning. This complicates things. You see, Riley ALWAYS goes low after a set change. To remedy this I have learned to decrease his basal 60% for 3 hours after his set changes. This helps immensely. He still might run on the low side, but it tends to keep those nasty 40s and 50s out of the picture.

He was 315 at his set change. I decided not to decrease his basal and see what happens. I don't want him to go too low. Dr. M stressed the importance of him having "plenty of sugar" to go into his cells and "plenty of insulin" to get the sugar into the cells.

His temperature is doing a little better. I was alternating Tylenol and Motrin about every 3 hours before to keep his temp at bay. Thus, helping to keep him from getting dehydrated and making his ketones even worse. (I'm thinking that's what brought the ketones back during the night. It's really hard to make a four year old wake up and drink an adequate amount of water in the middle of the night.) But, now we're down to having to take something about every 6 hours.

I'm hoping we're on the road to recovery and I'm hoping not to see that stupid purple color any more.

The trip, a late Christmas present, and a sweet ride

We are back from our trip. We had a great time. As I've mentioned before, Michael and I are the youth leaders at our church. We took the youth (12 total) to Gatlinburg, TN to an Xtreme Youth Conference. It started Thursday night and ended at noon on Saturday. We got to see some great speakers and bands. The bands included: Rachael Lampa, Jeremy Camp, Newsong, Hawk Nelson, and Third Day. The speakers were Tony Nolan, Josh McDowell, Ergun Caner, and Johnny Hunt. My favorite band/singer was Jeremy Camp, but Third Day put on a great show too. My favorite speaker was Josh McDowell. We heard him speak twice at this conference and we had heard him speak at a youth conference before. He is just a phenomenal speaker. Ergun Caner also held my attention and even received a standing ovation after his talk.

Anyway, we had a safe trip there and back. It was about a 10-hour drive each way. Surprisingly, Riley's sugars were pretty good. The long time in the car didn't seem to affect his sugars much. The only time I used the temp. basal was about 6 hours into our trip home. He started to run a little high. But, the temp basal (an increase of 10%) seemed to take care of the problem.

We brought in the New Year at church. It was nice. We got home around 2 AM and we were able to sleep until about 10:30. I couldn't begin to tell you when I last slept that late. Riley's sugars did just fine sleeping in. Have I ever mentioned how much I love the pump?

Speaking of the pump. Remember when we were having some pump issues? Well, the Saturday before Christmas at around lunchtime, Michael tried to give Riley a bolus and his pump alarmed yet again. It was the same alarm as before. Of course, Animas was closed, but I left a message and someone called back within about 5 minutes. As soon as she came on the phone she confirmed that it was the same alarm code as before and then made sure she had the right address.

She shipped out a new pump. It arrived the day after Christmas. When Riley first got his pump, we ordered a blue one. But, when we went to the pump start, they had a silver one to play with. Riley really liked the silver one. The lady on the phone asked if Riley still wanted a blue pump. I went and asked Riley and he said he wanted silver.

He now has a silver pump. Just yesterday, he looked at me and said, "Mama, I like my new silver pump."

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I got this idea from Kerri's blog. You are supposed to take each month and write the first sentence of "a definitive post" for that month.

Here it goes:

January: It's hard to remember when the waves weren't crashing around me.

February: The pump arrived at 9:50 this morning.

March: I knew that adjusting to the pump would be hard, but I had no idea how hard.

April: Six months ago today at this time, Riley was sitting in the floor watching TV and eating a frosted strawberry poptart and drinking a big glass of apple juice.

May: What is is about "firsts" that make me crazy?

June: One of the hard things about having a young child with diabetes is that they often cannot tell when they are low.

July: Holden has had allstar games this week.

August: Michael came home from his first day back at work with some disturbing news.

September: note: I got the word "klempy" from Lyrecha.

October: Walk of Hope is coming up this Saturday.

November: I can't post about what it feels like to live with diabetes.

December: Riley had an endo. appointment today.

Looking back at those posts made me realize how far we have come in the past year. There have been many ups and downs (or highs and lows, if you will), but, man, has it been a great ride.

Here's to a year filled with twist and turns, ups and downs, and a few even spots where you just coast while the wind whips through your hair. A year filled with butterflies in your stomach, moments of pure calm, and moments when you feel like your lunch is going to come back up.

I hope your ride this year is great. And, when you get to the end, with your hair a mess and your stomach queasy , you just smile and say "I want to do that again!"

Christmas at our house

I hope your Holidays were as great as ours.

As far as diabetes is concerned, it did have to rear it's ugly head on Christmas. First, Riley started with a runny nose and a cough on Christmas Eve. And, you all know what that means for blood sugars. But, by Christmas morning, things were starting to even out.

Then, in the middle of opening presents at my parent's house, he said his sugar felt low and he lay down in the middle of the floor. I quick check of the sugar revealed an icy 44. A few fruit snacks and peanut butter crackers later and he was good to go. He spent the rest of the day with his sugars bouncing around a bit. Now, all is back to normal (or at least as normal as diabetes can be) Riley did not let diabetes and bouncing sugars ruin his day, and this year, I didn't either.

Now, on to the pictures... First, a picture of the Santa goodies:

This is Riley's stuff. He got a TV and an Xbox. (Shhhh, it's his brother's old one, but he hasn't figured that out yet.) He also got a Knight's castle and a Chutes and Ladder game.




Holden was upgraded to an Xbox 360. It looks like he got less stuff, but we spent almost double the money on him.



Here's Riley opening his stocking.


and, playing an intense-looking game of Lego Starwars (which he also got from Santa) *(If you'll notice just behind his foot is a piece of paper. It is the back to his inset that we changed first thing Christmas morning. He was playing xbox while I changed it.)



Here's Holden with his new MP3 player that my parents gave him.



Riley got a CD player. Here he is listening to Spongebob Squarepants "The Best Day Ever" CD.



And, here he is still enjoying the xbox this morning.

I got lots of great things. My parents gave Michael and I a new mattress. It's like sleeping on a cloud. We also got a new TV. Our old one was about to die. We would have to hit it on the side from time to time to get it to work.

Riley gave me some memory foam slippers, which are just as comfortable as my new mattress. And, Holden gave me a new Aerosmith CD.

I gave Michael a second-hand weight bench. He got a tie from Holden and candy from Riley. (They both picked out our presents for us without any help.)

I guess that's about it..... Oh yeah, you may be wondering what Michael gave me for Christmas.

You can go to this post to read all about him. His name is Adam Morrison. He has Type 1 and he plays basketball for the Charlotte Bobcats.

And...... I WILL BE SEEING HIM PLAY EARLY NEXT YEAR!!!!!!!!!!! Yes, that's right. My wonderful, handsome, loving, awesome husband bought me tickets to see Adam Morrison play. I'm so excited, I can't stand it. They are good seats too.

And, the icing on the cake....Michael's parents bought my an authentic Morrison jersey. I'm all set for the game now.

This post doesn't really do justice to how excited I am. I watched a Bobcats game on the TV the other night. And, well, to put it mildly, they suck. But, Riley and I were both glued to the screen the whole time. I don't want to sound silly or anything, but when I watch Adam Morrison play, I'm filled with hope for Riley and his future. I just get this warm, fuzzy feeling that everything is really going to turn out OK for my little man. And, I'M GOING TO BE A FEW FEET FROM HIM!!!!!

We will be leaving Thursday to take the youth from church to a conference 8 hours away. So, I probably will not post any more until the new year.

I wish all of you a safe, happy, and healthy 2007!!!!

Some of my favorite Christmas songs

I was tagged by a few people to share my 5 favorite Christmas songs. This was no small feat for me. I love Christmas songs. I start listening to them in November. Riley and Michael make fun of me for it.

These are in no particular order:


#1) "O, Holy Night" I’ve read this one a lot of other blogs as being a favorite. It is just a very beautiful song.

#2) "Sleigh Ride" “Come on it’s lovely weather for a sleigh ride together with you.”

#3) "Mary Did you Know?" “Mary, did you know that your baby boy has walked where angels trod? And when you kiss your little baby, you’ve kissed the face of God?”

#4) "Santa Clause Is Coming to Town" This is not usually one of my favorites, but Riley has learned every word to it. I love to here him sing it.

#5) "Happy Holidays/It’s the Holiday Season" sung by Andy Williams I never knew the name of this song or who sang it, but I’ve heard it on the radio and I love it. The funny thing is when I typed some of the words to the song into Google to find out the name, the sites I were directed to were saying it was the worst Christmas song ever. So, I may be in the minority with liking this one.

I probably won’t post anymore until after Christmas, so I hope your Holidays are wonderful. I hope you get everything you want, eat too much, and get to spend plenty of time with your loved ones (even if it almost kills you).

Today

Riley had an endo. appointment today. The closer we got to her office, the more apprehensive I got. You see, I had a goal set for today. That goal was to bring Riley's A1C down from 7.8 to 7.5.

I took a deep breath as we entered Dr. M's office. I kept telling myself not to get my hopes up. I was fairly certain that his A1C hadn't gone up, but had it gone down to what I wanted to see?

Just before entering her office, Michael and I made a little bet as to what his A1C would be. He guessed 7.4. I said 7.5.

We went into the room where he would be weighed and measured. That started out well. He had grown 2 cms since September and had gained 2 pounds. I was very pleased with that. At one point he was going backwards with his weight.

Then I pulled out his "clicker" to stick his finger. Riley asked to do it. So he pricked his finger and the technician let him fill the little tube with blood.

We were ushered back into the waiting room (which is right beside the room with the A1C machine in it.) The tech went somewhere else and the Dr. was in the room with a patient.

I heard the machine beep. I looked at Michael and said, "I'm going to go look." He just looked at me like "you can't do that".

"I can't wait any longer. I want to know now."

I got up and tiptoed over, so the tech wouldn't hear me enter the room. Just before I walked through the door I took a deep breath. This was the moment of truth.

I looked at the machine and saw..... TEST ERROR; consult operator's manual. No, no, no. It hadn't worked. I sat back down and waited some more.

A few minutes later the Dr. walked in and looked and saw the error herself. We had to repeat the test.

By this time, I was about to burst. I know A1Cs are just gauges to go by. But, this is what I had focused on the last 3 months. I had adjusted basals, carb ratios, and even sensitivity factors. I had learned to finally trust the pump. But, had it paid off?

While we were waiting, Dr. M went over Riley's sugars (which she was very pleased with, by the way). We discussed what to do next week when we take a 10 hour car ride. We are going to decrease his target glucose by 10% and increase his basals by 10%.

While all of this was going on, my mind was still on that little machine in the room next us, wondering what number was flashing on the screen.

Finally, she got up and went into the next room. Again, I took a deep breath.

"How does 7.2 sound to you?" , she said with a big grin on her face.

I started jumping up and down and clapping my hands. I just couldn't believe it, 7.2. Dr. Morris said that if some other kids Riley's age came back with an A1C like that she might be concerned. But, she thought it was a wonderful number for him. She said she knew we were testing often enough and "on top of things".

I told her I didn't need anything for Christmas now. Short of a cure, this was the best Christmas present I could get. And, I meant it too.

I couldn't stop grinning as we were leaving the offie. Christmas had come early and I'd gotten even better than what I expected.

We had a 3 hour drive home. And sometimes when it had been quiet for a while, I'd look at Michael and say, "Hey, Michael, 7.2!!!" And, sometimes he'd do the same to me.

The elation had worn off some after we got back home. But, now writing this, I've gotten excited all over again.........













Hey, reader, 7.2!!!!!!

I have to post it too

I've seen this link on several other blogs and just had to put it on mine too.

Is it possible that they've been wrong all along? Diabetes isn't auto-immune, but neurological. Or both?

I don't know. I just know that reading it gave a boost to my hope. My hope (for a cure) has always been intact. I don't know if always will be. After 10 or so years of this disease, will I still feel the same way? I don't know. I hope I don't have to find out.

It's like I commented on Kerri's blog. I don't really think about a cure very often, hardly ever, really. Usually, I'm just trudging ahead taking care of the task at hand. Then, an article like that comes out and I'm stopped dead in my tracks. I stop long enough to ponder what it might mean. I think about what it will mean for my child and others like him if it comes to fruition. Then, I start putting one foot in front of the other again, taking care of the task at hand.

Except now, there's a little extra spring in my step.

In the light of day

Looking at my last post in the light of day, I realize how silly it seems.

I don't want anyone to think I was complaining about Riley's sugars. I'm not. I think they're great. I feel very blessed that he is having such nice sugars. I know that they'll only be around for a little bit, so I'm just going to enjoy them.

I think maybe I'm so used to analyzing everything related to Riley's sugars that even when they are good I'm still analyzing.

It's hard to just let this disease be.

Don't look a gift horse in the mouth

I realize that after reading this post some of you will think I'm completely crazy. It's OK. I think I'm crazy most of the time anyway.

I posted last that Riley's sugars have averaged 147 over the last week. Well, I've been keeping up with his daily average too. Monday it was 144 with his lowest sugar being 87 and a high of 288. Yesterday his average sugar was 126 with a low of 83 and a high of 212. So far today he's averaged 130 with a low of 80 and a high of 204.

I should be jumping up and down with excitement, right? I'm not.

What's wrong with me? I can't seem to get excited about his sugars.

At first, I thought maybe he's just honeymooning. But, his insulin dosages have not decreased. All of his basals are the highest they've ever been. The last time I made an adjustment to his basals was on November 18th and that was to increase some of them. Just to be sure, I googled "the honeymoon phase type 1 diabetes" and found just what I expected. When someone is honeymooning their insulin needs decrease and they may be able to stop taking insulin all together for a short time. So, he's not honeymooning, I don't guess.

And, he's not somehow miraculously cured. He's gone into the 200s at least once every day.

Riley's sugars have not ever been this low since he was diagnosed. Ever. Not even in the beginning when he supposedly was honeymooning. There was a time when he went into the 300s at least once if not twice every day. I just thought that's how it is. Sugars go up and they go down. The key was to not let it stay up or down for too long.

So, what's going on? Did I just somehow unlock the secret basal code? Did I win the diabetic lottery?

Whatever it is, it's making my uncomfortable. Yes, you read that right. (I told you, you'd think I was crazy.) I feel like something is wrong. His sugars are great. Yet, there's this nagging feeling in the pit of my stomach.

Why do I feel uneasy? I really don't know. Maybe it's because I know it's not going to last long and that diabetes is eventually going to come back full force and kick my butt.

I don't know. It just doesn't seem....right, somehow. He's not supposed to have normal sugars. Although that's what I'm supposed to be trying to achieve, I guess I thought it was unachievable.

I know from experience that sometimes diabetes just is what it is. I shouldn't be worrying about why it's happening. I should just be enjoying it while it's happening. While I know all of this, I still can't quite enjoy it.

Anyone else out there ever felt like this about a good run of sugars, like something was wrong? If so, let me know. That way I'll know that maybe I'm crazy but not completely crazy.

And, if you do think I'm completely crazy just comment with a "Gee Penny, you're a great person." That way I'll know you think I'm completely off my rocker, but you don't actually have to come out and say it. ;-)

Pump update

Thank you all for your advice about Riley's pump. But, his pump has worked fine ever since I wrote that post. We haven't had anymore alarms or unexplained highs. Actually, his sugars have been doing really well.

I went through and looked at his sugars last night. His blood glucose over the last week has averaged 147......147 what a beautiful number. That was with 2 lows the whole week. I'm happy.

Very happy.

All about Adam

I talked about him last year. He's my very favorite NBA player. He may make me love the number 35, much like someone I know who has a thing for the number 33.

Yes, I'm talking about Adam Morrison.

Adam has Type 1 diabetes and is playing basketball at the professional level. I just think that is awesome. You know what else is awesome? He plays for the Charlotte Bobcats right in my very own home state of North Carolina. I would love to go see him play. I looked up tickets on the internet and quickly learned that I will not be seeing him play in person, unless I would like to sell my car or something to do so. (I didn't realize how much tickets actually cost.)

Want to know more about Adam? Check out what wikipedia has to say. Or you can go to his Lifescan site, Diabetes and Food. Or you can go here to watch a video of him.
I can't say enough about this guy. From what I can tell he's trying to step up and be an advocate for diabetes. I love that someone can bring this disease out into the spotlight.

I love to watch him play. Whenever he's on TV, I'm glued to the screen. To me, he's proof that Riley can do whatever he wants.

"Hi, I’m Adam Morrison. I was diagnosed with Type 1 diabetes when I was in the eighth grade. My doctor told me then that, even with diabetes, I’d still be able to play in the NBA (National Basketball Association). I was determined to prove him right. Today, I want to show people with diabetes that it’s possible to live a healthy life and to follow your dreams. That doesn’t mean it’s easy. I exercise, take my medication, watch what I eat and test my blood sugar regularly. My goal is to keep my blood sugar in a healthy range to help me avoid complications. I'm not perfect, and I find food can be a challenge. Having diabetes doesn’t mean you have to give up the foods you love, but it is important to understand how food choices and portions affect your blood sugar."

Yes, I think 35 is now my favorite number.

ADA update and pump malfunctions (yes, that's plural)

First things first, I have been meaning to update everyone on what was happening regarding my concerns with the ADA, but just haven’t found the time.

Nicole got the ball rolling for me a few weeks back be emailing someone she knew. This person in turn forwarded that email to a very nice gentleman who works for the ADA. I’ll call him Mr. T.

Nicole very eloquently stated in her letter the concerns that we had regarding the ADA listing 3-4 times a day as a guideline to how often to check blood sugars. Mr. T. (who has Type1, by the way) at first had trouble believing that the ADA actually listed a number of times to test a day. Nicole and I both sent him links to the places on the ADA web site which showed this.

Mr. T contacted “his people” to see why. He was told that they were just general guidelines and that should not be taken as hard facts. That everyone should consult their health care provider to determine how often to test, etc. etc.

I told Mr. T that if they are just general guidelines, then they shouldn’t be up there at all. And, also made him aware that evidentially some people (and insurance companies) are taking those numbers to heart.

Long story short, Mr. T wrote a letter to Riley’s insurance company stating that the ADA does NOT recommend testing 3-4 times a day and that the actual amount of times to test should be determined by their health care provider.

My favorite part of Mr. T’s letter came in the last 2 paragraphs:

“It is especially important to note that the increased usage of insulin pumps and rapid-acting insulins (such as Novolog and Humalog) across the general insulin-dependent population –and thus more strict diabetes treatment regimens– necessitates the need for greater daily glucose tests in order to adequately monitor glucose levels to minimize the risk of hypoglycemic events.

As you know, one of the greatest short-term dangers for people with insulin-dependent diabetes is hypoglycemia. Not only can these events lead to catastrophic results for an individual, but they may also require hospitalization and medical attention which prove to be much more costly for the family, the insurer, and society as a whole. Indeed, the ADA hopes that insurance companies such as yours begin to take a long-term view of the benefits of increased glucose monitoring. Insurers should encourage people with diabetes to test more frequently rather than inhibit their ability to do so in a misguided attempt to save the short-term costs of glucose test strips.”

The last paragraph especially made me want to say “You go Mr. T!!!”

He is also checking with the people who put things on the website to see how to go about getting the wording changed.

So, I want to send a big thank you and a great big hug to Nicole for all of her help with this.

If we can get the wording changed on the web site, that will be great. But, what I really hope is that the letter he sent will make a difference in the long run about how many strips insurance companies will allow.

One more thought I’ve had with all of this: if testing often is not really that important then why is everyone pushing for the continuous monitors? I know that insurance doesn’t cover them right now, but I hope that they will at least partially cover them in the near future. The continuous monitors are considered great advancements to help achieve better blood sugar control. How then can people say I’m testing my son too often? It just boggles my mind.

Now, on with the rest of the story….

I’m lying in bed at 6:20 this morning. Michael had just gotten up to get ready for work and I asked him to check Riley’s sugar. We don’t usually check it at this time, but he had run higher during the night than usual and had to get a correction. I wanted to make sure he was not going too low.

I hear the machine beep. “He’s 212.”, I heard Michael say.

I sleepily respond with, “How in the world did that happen? Give him a correction.”

Michael replies, “It says give him .45 units.”

“Give him .30”, I say. ( He tends to drop the most at this time of day, so I’m being a little conservative.)

I hear Michael pushing buttons and then I hear, “Crap!”

“What’s wrong?”

“It says, ‘No delivery, call for service’”

I jump out the bed to reset the pump. I know what to do. This has happened before. I checked the history. It last happened in September.

I took out the battery and rebooted the pump. This involves rewinding, loading the cartridge, and priming.

All seems well. I gave him his bolus. ( A full bolus this time, because I’m not sure how long he’s gone without insulin.)

I didn’t call Animas right away. I laid in bed with Riley for about 15 minutes and then got up to got ready for work myself.

I called Animas a few hours later. I was told that the pump performs self-tests every minute and that it was just a safety feature. I told her it had last happened in September. She said it was just something that the pump did at random times.

I told her that my son’s sugar was high at a time of the day that it normally wasn’t and I was concerned that the pump was not working correctly prior to it alarming. (Sound familiar, Sandra?) She assured me that all was fine and that she would put the alarm in Riley’s record.

I hung up. From reading Sandra’s post before, I kind of knew what to expect. So, I just brushed it off.

Later, I was coming back from seeing a patient and was thinking: “ If this is just something that the pump does occasionally, why doesn’t it tell you that in any of the literature that comes with the pump?” Because, it’s not really supposed to alarm all that much, is what I’m thinking. I looked at Riley’s history earlier and noticed the same alarm had happened not only in September, but also in June and May.

As I’m thinking about this, my cell phone rang. It was my mom. “Riley’s sugar is 284. And, I went to give him a correction. I gave him .75 units and then the pump started alarming and says ‘No delivery. Call for service.’ Should I let him eat now or wait?" I told her to wait that I was only 10 minutes away.

I arrived at mom’s and performed the same steps I had earlier that morning. I looked back at the history and it said he had received .75 of .75 units, so I’m hoping he actually got the correction bolus.

I then got back on the phone with Animas. I’m thinking that surely they would send out a new pump. It had alarmed twice in 6 hours.

Not so, I was told. The pump must alarm 3 times in a 30 day period before they will send out a new pump.

I was trying very hard to be nice to this man. I know he was just doing his job and telling me what he had been trained to tell me.

I expressed my concern that the pump wasn’t working correctly. I told him I knew that blood sugars could vary greatly at different times of the day and that sugars changed on a day to day basis. But, I explained to him that my son’s sugar had been high at 2 times during the day when that is not usually the case and both times, the pump had alarmed "no delivery".

This is what he tells me. “ I guarantee your son’s pump is working correctly.” I’m assuming he told me this to make me feel better. It didn’t work.

I just told him that I “guaranteed” that the pump had alarmed twice in 6 hours and that that just wasn’t normal. I asked him how he could guarantee it was working correctly without actually examining it himself. He explained, just like the lady before, that the pump performs self-test every minute, blah, blah, blah.

I told him that I understood that, but that if it was performing self test and then alarming then something must be wrong.

Then, he explained that the type of alarm that we had means that the 2 processors were not receiving the same data. Well, that sounds like a problem to me.

I went around and around about this with him. I was just trying to explain that the reason the pump has alarms at all was to alert us to when something was wrong. And, the fact that it had alarmed twice in a 6-hour period was telling me that something was wrong.

I could not get him to admit that there is something wrong with the pump. I finally just told him that he needed to understand that I was uncomfortable keeping this pump because I didn’t think it was working correctly.

All I was told that if it happened again in 30 days, they would send out a new pump. I thanked him and hung up.

AGHHHHHH!!! I am so upset right now. We’ll see how it goes tonight. I don’t really want it to happen again, but then, in one way, I kind of do, just so I can get a pump with which I feel more comfortable.

I just keep reminding myself how lucky we are to have pumps and how lucky we are to have been able to get one for Riley.

And, how lucky we are to have Riley at all.

It's an honor just to be nominated

I am shocked to have been nominated for Best Parent Blog of the D-OC.

I am so honored to be included in this category among some of the best D-bloggers there are: Shannon, Sandra, Vivian, and Julia.

Congratulations to everyone who has been nominated for an OC award.

Go here to vote for your favorites in categories such as Best Parent Blog, Best Type 1 Blog, Best Type 2 Blog, Best Female Blogger, Best Male Blogger, Best D News Blog, and Best Non- blog D resource. Voting will take place until December 30th.

So, go vote!! And, thank you to whoever nominated me. I'm touched. Really.

5 things I've learned

I have learned a lot of things about diabetes over the past 14 months. The vast majority of things I have learned have come by trial and error. Another large resource for me has come from the diabetic community (aka The OC). Hardly any of my diabetes knowledge has actually come from the medical community. Weird, huh? One would think that most knowledge comes from your healthcare provider. But, not with this disease. With diabetes, you sort of learn as you go. You can't really explain how to live with this disease. You just have to learn it all on your own.

I'm going to list five things that I was told/taught in the beginning of this disease that didn't really hold true for Riley. They may work for others, but not Riley. And, I know that Drs. have to be somewhat general in their teaching since everyone is very different. That's why this disease is so hard to deal with.

#1) "Treat all lows with 15 g of carbohydrates. Test again in 15 minutes. If you are not back into your target range, treat with another 15 g carbohydrates. Once you are back into your target, eat a snack with some protein to keep you sugar from dropping again."

Hmmm, I actually followed this rule in the beginning. Do you know how many highs we had from overtreating lows? I don't even want to think about it. Now, Riley gets fruit gushers. They seem to do the perfect job of giving him that boost of sugar he needs without shooting him up too much. I count each gusher as 2 g carbs. Riley gets gushers according to what his sugar is, how much insulin is on board, and how long it will be before he eats a snack or meal.

For example, a low of 60 with no insulin on board, may get 2-3 gushers and a peanut butter cracker (3g) if he's not going to eat anytime soon. If he's about to eat, then he just gets the gushers while I'm fixing his snack or meal. See the difference there? Just about any endo. will tell you to treat every low with 15 grams of carbs. But, Riley's lows are usually treated with 4-8g. He's 4. He weighs 35 pounds. He doesn't need all those carbs to bring his sugar up. It took a lot of trial and error to figure out his gusher to sugar ratio.

Another problem with this "rule" is the "test in 15 minutes and if you're not in your target range, treat again". This has not been very helpful either. Again, in the beginning, I followed this rule. I didn't know any better. I'd wait for what seemed like an eternity. (When your child's sugar is 40, 15 minutes seems more like 15 hours.) And, if Riley was not in the range that his endo had given me (150-225) , I would give him 15 more grams of carbs.

Now, I test again in 15 minutes or sometimes 20 if he's not too low. I've found that waiting that extra 5 minutes helps to get a better picture of how his sugar is coming up. Besides, most times after 5 minutes or so, I can see the change in Riley's demeanor and I know he's coming up. I've learned that Riley does not have to be in range after 15 minutes, his blood sugar just needs to be up from what it was. For example, if I test and he's 50, I'll treat with carbs and wait 15 minutes. If he's 80, then I know he's coming up and the gushers are working. Of course, I'll check again later to make sure he hasn't dropped again, but I don't treat him again because he's not exactly in range. If I treat again, we'll usually get a sugar in the 200-300 range a couple of hours later.

I've also learned that he needs more or less carbs to treat a low depending on the time of day. For example, he needs less carbs in the middle of the night for a low. And, it may take a little longer for the low to come up in the middle of the night.

#2) "You should have diabetes for a least a year before even thinking about starting on a pump."

This "rule" is pushed by just about every endo I have come into contact with. I pushed for Riley to have a pump from the very beginning. I knew it wasn't feasible to get a pump within a few weeks of diagnosis, but I was not about to wait a whole year before even discussing the possibility of the pump.

Riley's first endo. was a nice enough man, and I think he's very knowledgeable about Type 1 D, being that he has it himself, but, he was very adamant that no one should be on the pump while they are still honeymooning. What?!?

It's easier to adjust insulin or stop insulin all together with the pump. While you're honeymooning, is exactly when this is the most beneficial. Riley was on Lantus/NovoLog in the beginning. And, once that Lantus is in your system, it's there for a good 24-36 hours. So, if your pancreas decides to start working and kicking out it's own insulin, then you have a day of stuffing carbs into your kid. With the pump, you can decrease his basal or stop his insulin delivery all together. And, when their pancreas decides to stop working again, and trust me, it will, you can go back to how you were doing things to begin with.

The second argument that I often heard about why no one should be on a pump the first year, is "you need to get used to giving injections before you go to the pump". While I agree with that statement, I do not agree that it takes a year to master the art of giving an injection. Riley started on the pump 5 months after he was diagnosed. I filled up two gallon jugs with syringes during that time. Yeah, I got plenty of practice drawing up insulin and giving shots to my 3 year old.

#3) "Young children should not be placed on pump therapy."

Riley was 3 when he started pumping. I met a lot of resistance from not only the medical community, but the diabetic community as well with this little "rule".

The first endo's reasoning was that Riley was too young to effectively help with the pump or understand the pump. Again...What?!?

Riley was too young to effectively help with or understand his injections too. But, that didn't keep me from using MDI to keep him alive. "Oh, he doesn't understand how to draw up insulin or inject himself. Maybe we should try an alternative." Wait, there isn't an alternative. He was three, he didn't need to understand how the pump works, I did.

That was what I heard from the medical community. The diabetic community had another reason for saying Riley shouldn't have a pump. Not everyone, mind you, but I did meet a lot of resistance from parents whose kids were not on the pump, and to my astonishment, parents whose kids were on the pump, but still thought mine shouldn't be.

I heard a lot of "He's too young. What if he doesn't like the pump? It should really be his decision." I have two problems with this.

For one, if he didn't like the pump, well, then, we would have switched back to MDI. I wouldn't have wanted to, but Riley is the one who has to wear the thing 24/7. If he was just adamant that he didn't like it, then I would have respected his wishes and waited until he was ready. That would have been very expensive to buy a pump and not use it. But, it was an option. It's not like once I started him on the pump, we could never go back.

Secondly, while using a pump should ultimately be Riley's decision, he was 3 at the time. A three year old does not have the cognitive ability to make such decisions. Exactly why you should wait until he's older, some would say. Well, I don't agree. The age at which a child is able to make decisions like this varies from child to child. While some may be able to reach this decision on their own at 8 or 9. Some may not really be able to until they are 11-12.

As parents it's our job to make these decisions for them until they can make them on their own. For example, I still pick out Riley's clothes for him. He is just not capable of picking out an outfit to wear out in public. He may get it right some of the time. But, most of the time, he'd end up in Spongebob pajama pants and his blue "Baseball is Life" T-shirt. And, he'd wear flip flops or sandals in the dead of winter.

See where I'm going with this? If picking out your kids clothes so that they are presentable is a task we parents should do, then how much more important is it that we make wise decisions about their healthcare for them until they can do it on their own? I'm not saying that the pump is the only wise decision. While, I love the pump, I do realize it's not for everyone, whether they are children or adults.

But, as parents of toddlers and young children, we shouldn't be treated by others like we're making the wrong decision for our children. These people that were telling me I should wait because Riley was too young, didn't even know Riley. Most of us our doing the best we can to make the best decisions we can for our children. We all get it wrong occasionally, but that goes back to the whole trial and error thing.

#4) "Small children should not have an A1C below 7.5"

While I think this is a good rule for most children, especially the very young ones who are hypoglycemic unaware, it is not a hard and fast rule for all kids. I would love to see Riley's A1C below 7.5. The key is to achieve that level without a lot of lows.

Riley's last A1C was 7.8. That is in the range of 7.5-8.0 that is recommended, but it's not good enough for me. A child Riley's age without D has an A1C in the 5% range. While that is not a possibility for Riley, I still think we can do better than 7.8.

My next goal is to have him at 7.5. Then, we'll try to decrease it from there.

I can just see the red flags going up in some of your heads. You think I'm entering the danger zone. While 7.5 is my goal, I would never put Riley in harm's way to achieve it. If he starts to have a run of lows, I will decrease his basals accordingly. So far, that hasn't happened. Not even close. He's had a random low here and there.

At his last appointment, we got the OK from the endo to try for a lower A1C. She said that while 7.8 is in range, we can do better. She's right. She went on to tell us why she thinks Riley can have a lower range than some others. Basically it boils down to the fact that we test Riley often, thus we would catch the lows. And, we know if he starts running a pattern of lows, we need to decrease his basals.

Since his last appointment at the end of September, I've been slowly increasing his basals. This increase hasn't caused any unusual lows. What it has done has decreased his average sugar to about 170. I'm happy with that.

#5) "You do not need to test your child's sugar in the middle of the night."

When Riley first came home from the hospital, his endo said to test him at 2 AM for a couple of night and then we wouldn't need to get up in the middle of the night anymore after that.

Who was he kidding? Me, sleep through the night? Ha. What a laugh.

When Riley was on Lantus, he would drop A LOT during the night. We had many, many low, low sugars during the night.

Now that's he's on the pump, I still get up and test. For one reason, because I need to know how his sugars are doing to make sure his basals are OK. Yes, I could go by his morning sugar and know that if it's too high, then his basals aren't right. But, I'm not willing to let him run high all night just to get a few z's. And another reason why I test at least twice in the middle of the night is because if his pump malfunctions or his set goes bad, then he could go high very quickly. Now, if Riley does go high in the middle of the night, he usually wakes up having to go the rest room. Again, I could use that as my cue. But, I'd much rather catch the high before it gets too high. It doesn't always work. Sometimes he spikes up to 300 or goes down to 56 (happened at 3AM about 3 weeks ago) even with me checking a couple of times a night.

I'm just much more comfortable sacrificing my sleep than taking chances with his sugars.

All of these things I've just listed have been learned from personal experience. They are not advice to anyone. Just things I've leaned that work well for Riley. I was not trying to imply that every child should be on a pump. And, I'm not saying that if you don't get up and check your child's sugar in the middle of the night, you are a bad parent. Your child's sugars may be just fine every night. But,Riley's sugars have always fluctuated a little more at night.

In other news, Riley's sugars finally started going down around bedtime Tuesday night. He woke to a sugar of 118 Wednesday morning and no ketones in sight. His sniffles are gone, but his sugars haven't quite caught up yet. He's still running a little higher than I like, but a least now, he comes down with a correction and he doesn't need the temp. basals anymore.