Tuesday, December 26, 2006

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!!!!

Thursday, December 21, 2006

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).

Monday, December 18, 2006


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!!!!!!

Saturday, December 16, 2006

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.

Thursday, December 14, 2006

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.

Wednesday, December 13, 2006

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. ;-)

Monday, December 11, 2006

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.

Sunday, December 10, 2006

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.

Thursday, December 07, 2006

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.

Monday, December 04, 2006

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.

Friday, December 01, 2006

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.