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.

Wednesday, November 29, 2006

The streak is over

Well, diabetes found out I was pleased with Riley's sugars and decided to do something about it.

He started having a stuffy nose last night. His sugars have crept up accordingly. He ran in the low to mid 200s all night last night even after corrections. The lowest he got was 168 at 4:30 this morning, only to wake at 198. I started a temp. basal increase of 60% and he did better for a while, staying in the 160-190 range. But, tonight, he's up in the 300s.

He's now at an increased basal of 80%. His pump was set at a max dose of 12 units per day. (He's never got more than that.). Just now, when I tried to give his correction bolus (for a sugar of 322) the pump wouldn't let me because I was exceeding his max daily dose. I had to go back in and increase his max daily dose so I could give him a bolus.

I feel like I'm pumping in water instead of insulin, for what good it's doing.

I really, really hate this disease. I mean, he just has the sniffles, for goodness sake. He doesn't even have a temperature.

Oh yeah, he also has moderate ketones. I'm forcing the fluids and keeping a close check on things. If this last temp basal and correction don't help, I'll be calling the endo. for some advice.


Monday, November 27, 2006

The rest of the pictures

I'm finally able to post the last of my pictures I was trying to share with you.

I said in my earlier post that there was a dinosaur in my house on October 31st, but I meant there was a dragon.

A very cute one, too!!!!

For Halloween, we went to our church for a Trunk or Treat event (kids go from car to car and people give out candy/goodies) There, Riley was able to participate in some games.

Holden even joined in the fun. He and Riley competed in a race to see which team could dress in women's clothing the quickest.

And, here he is back at home with his candy stash (and a Frankenstien Spongebob)

It's really amazing what a difference a year makes. I remember being so sad last year at Halloween. Riley was diagnosed just a few weeks earlier and a holiday that seemed to be all about candy was a little more than I could handle. Last year there was quite a few tears, but this year, not a one.

A lot of the people at church gave Riley sugar free candy or didn't give him candy at all, but a little toy. I thought it was very nice and thoughtful. (Even though sugar free candy doesn't have much less carbs than the regular stuff.) Still, it was nice of them to think of Riley

In other news....

shhhh, come closer. I don't want to say it too loudly.

Are you ready?

Riley's sugars have been absolutely awesome for a good 3-4 days now.

woo hoo!!!!!

(Lots of quiet celebrating going on here. I don't want diabetes to know I've noticed or else it will wreak havoc to make it's presence known.)

Thursday, November 23, 2006

Giving thanks


the act of giving thanks; grateful acknowledgment of benefits or favors, esp. to God.
an expression of thanks, esp. to God.
a public celebration in acknowledgment of divine favor or kindness.
a day set apart for giving thanks to God.

Riley says his prayers every night before going to sleep. Most of the time, he says the uniform prayer: " Now I lay me down to sleep. I pray the Lord my soul to keep." And, every night I ask him if he has any extra prayers. Sometimes he does and sometimes he doesn't.

I love the nights when he decides to say an extra prayer. I think when most people pray, they are usually asking for something. They may throw a few thank yous in there, but for the most part, we're asking God to do things. They are usually good things like "protect my family" or "be with so-and-so, who is in the hospital". But, still we're asking for things. I guess I can only speak for myself here, but I'm not nearly thankful enough in my prayers (or my daily life for that matter)

When Riley says his extra prayer, it's all about giving thanks. Here's a sample: " Dear God, Thank you for my mom and dad and Holden. Thank you for the trees. Thank you for grocery stores so we can have food to eat. Thank you for dogs. Thank you for policemen to protect us. Thank you for cars, so we don't have to walk everywhere. Amen."

See, he didn't ask for a single thing. Why can't I be like that?

I was thinking I would write a post today and try to be like Riley's prayers. I thought "He's so thankful for the little things." Then, I sat down to write and I started thinking. I was thinking of all the "little things" for which I'm thankful. Then, I realized they aren't really little things at all.

Just look at Riley's prayer. The trees, they give us air to breathe and they are beautiful, especially this time of year with all the yellow, orange, and red on the leaves. The grocery store, while I absolutelyy detest going there, I should be thankful that they exist. I take for granted that I can just walk in, buy what I want and leave. So many people all over the world don't have that luxury Dogs, well, how can you not be thankful for dogs? They are "man's best friend". They are among the most loving and faithful things on the planet. And, besides, they're cute. Policemen, well, that's obvious. These men and women put their lives on the line to keep us safe. And, they don't even know us. And, last but not least, cars. I am very thankful for my Pontiac Vibe. I would hate to have to walk everywhere. I live in a very rural area where everything is pretty spread out. But, I see people walking down the road everyday, looking for a ride.

I want my life to be more like Riley's prayers. I want to look at the world and see all the things for which to be thankful. Instead of stressing over what I don't have. I want to be thankful for what I do have.

I found this poem that says it better than I can.

If you find yourself stuck in traffic; Don't despair. There are people in this world for whom driving is an unheard of privilege.

Should you have a bad day at work; Think of the man who has been out of work for years

Should you despair over a relationship gone bad; Think of the person who has never known what it's like to love and be loved in return

Should you grieve the passing of another weekend; Think of the woman in dire straits, working twelve hours a day, seven days a week to feed her children

Should your car break down, leaving you miles away from assistance; Think of the paraplegic who would love the opportunity to take that walk.

Should you notice a new gray hair in the mirror; Think of the cancer patient in chemo who wishes she had hair to examine.

Should you find yourself at a loss and pondering what is life all about, asking what is my purpose? Be thankful. There are those who didn't live long enough to get the opportunity.

Should you find yourself the victim of other people's bitterness,ignorance, smallness or insecurities; Remember, things could be worse. You could be one of them

Happy Thanksgiving to all of you. I hope your day is great and your thankfulness extends beyond today and spills into your everyday life.

Tuesday, November 21, 2006

Some going ons...

With all that's been going on lately (Walk of Hope, Riley's one year anniversary, etc.) there are things I didn't post about.

So, I thought I'd relate some of the things in pictures. Here's some of the non-D things that have been going on over the last couple of months.

Michael was on a church league softball team. I was on it last year too, but was unable to play this year because of my wrist:-(

His team went on to win the whole tournament. They lost their very first game to put them into the losers bracket. Then, they had to fight their way back. The last day, a Saturday, they played four back to back game. They had to beat the undefeated team twice, but they did it.

Did I mention it was cold as begeesus that night?

We took time out right before Walk of Hope to attend the local county fair.

As soon as Michael's softball season ended, soccer practice started.

Then on to soccer games....

They didn't really keep score at the games, but Riley's team had an undefeated season. The very last game I asked Riley if he was going to score a goal for me. (He hadn't scored all year.) He said "I don't know if I can, but I'll try." Then, I told him he needed a good luck kiss. I kissed him and off he ran to play. About a minute later, he scored!! He was so excited (and so was I). Later, when he was relating the story to someone else he pointed to me and said "It was all because of mommy's kiss."

The day after Riley's last game, Holden started basketball practice. I don't have any pictures yet, but I'm sure you'll be seeing some later. Games started Tuesday.

There was more to this post, but blogger won't let me post anymore pictures at the moment. When I am able to, I will share with you the ferocious dinosaur walking around in my house on October 31st.

Sunday, November 19, 2006

Happy blogaversary to me...

I started this blog one year ago today. It really doesn't seem like it's been that long. A lot has changed since then, my knowledge, my emotions, my mental state.

I must tell you the story of how I started this blog in the first place and how I came to know about The Diabetes OC.

Early on in this disease, I spent a lot and I do mean A LOT of time on the chat room at Children With Diabetes. It was very helpful to chat with others going through the same thing.

One day in the chatroom Ellen linked to a blog post, this one. I, of course, thought it was great. It made me cry, as did most things back then.

I had heard the term "blog" before, but I didn't really know what one was nor had I ever thought about starting one. The next day I was on the internet Googling all sorts of things about diabetes. One time I typed in "my son has diabetes" and really didn't find any useful results. I didn't find what I was searching for, which was someone who was going through the same thing that I was.

Next, I searched "how to start a blog". I was directed to blogger.com and the rest is history. I started my blog that day. (Here's my first post.) I didn't really know what I was going to write, but I knew why I wanted to write. I started writing this blog to help other parents going through the same thing. That just seems silly to me now. I was so new to this disease, six weeks in, when I started this blog. I was still an emotional wreck and no help to anyone, not even myself.

Oh well, I had good intentions. But, as I started writing, even though no one was really reading it, it helped me immensely. It just helped to get it all out. I eventually stopped writing like I was out to help and just started expressing how I felt. And, how I felt then was not pretty nor was it uplifting, but it was real.

A little while after starting my blog, I was on the CWD chatroom again. I had met a nice lady named Vivian. We had chatted before and this time, for some reason, I mentioned that I had a blog. That's when Vivian told me that she had a blog and asked if I'd ever heard of The OC. I told her all I knew about The OC was that it was a TV show. That's when she shared the D-OC with me. I left the chatroom and sent an email right then. Within a few days, I was the newest member.

And, because of that (thanks, Vivian), I have met some very amazing people. You all have helped me immensely over the last year and for that I am very thankful.

So, that was my journey to the land of blogs.

Oh yeah, and one more thing. Today is also my birthday. 33 years and counting...

Thursday, November 16, 2006


I realized several days ago that I had been tagged by Shannon. But, I am just now getting around to revealing 5 not very well-known things about myself.

Hmm...where to start?

#1) I am not a very social person. I am not antisocial, but I really don't like being around other people for too long. I like other people (most of the time), but really do not feel any need to bond with any of them. I am a member of a missions group at church. Occasionally, they get together and go away for the weekend, just for fun. I never go. Same thing when the girls from work get together to go shopping on the weekend. I'd rather stay home. I have no need for close friendships. While I like these people, I just do not want to be around them for hours at a time. Man, that sounds horrible, doesn't it? I'm not a bad person. Really. I'd do just about anything to help someone out. Just don't ask me to go shopping or attend a party with you. That is just not my cup of tea.

#2) I like to put molasses on rice. I don't do it all the time. But, sometimes I do. Butter, molasses and rice. Mmm,mmm,mmm.

#3) I am a car slob. My car is always messy. It is usually littered with discarded cups and papers. There are toys in there, jackets, various odds and ends. I do clean it out occasionally. And, I love it when it's clean, but it's not long before it's completely trashed again. Sometimes when I park it somewhere I wonder what people think if they look inside. They probably think that I'm a total slob and that my house is a disaster too. But, that's not the case. I just can't seem to keep my car clean.

#4) People/bands that I have seen live:

The Monkees, Gary Puckett, and Herman's Hermits (no, I wasn't born in the 50's). When I was in junior high, The Monkees TV show started airing again. My best friend and I loved them. (Hey, I was 12). They had a reunion tour that year and we went to see them. Needless to say, much screaming ensued.

Aerosmith (5 times) Once, I was 6 feet from Steven Tyler. Needless to say, much screaming ensued...even though I was 29 or 30 at the time.

Garth Brooks, I am not a fan of country music, but I went through a Garth Brooks stage in my early 20s. He really is a good entertainer.

Collective Soul, Monster Magnet, Saliva, KISS, Kid Rock, Van Sant, The Katies, Newsboys, Grits, and Kutless.

#5) When I was in 2nd grade, I slammed my finger in my mom's car door. We had just arrived home and Rusty, our dog, was trying to jump into the car. So I slammed the door shut really quickly and didn't pull my hand away fast enough. I ran up to my mom with blood dripping down my hand and showed her my nearly severed finger. When she washed it off in the sink, she realized that it was only attached by a very thin piece of skin. I went off to the Dr. and then the ER. That was back in the day before they had specialists for anything. A regular old family physician sewed my finger back on. It was the middle finger on my right hand. It still has two scars on it and my fingernail doesn't grow on that finger anymore. I have a fingernail. It just never grows. I never have to cut it. Also, the Dr. said my bone was crushed at the end of my finger, so I have no bone there anymore. (Other bones I have broken: When I was 18, I broke my left hand playing basketball in high school. My cast was not due to come off yet for a couple of weeks when I walked into the Dr's office and demanded that he remove it. We had made the states and I was not going to miss out on playing basketball in the state tournament. He removed it. I taped up my hand and played. We won the first game, but lost out in the second round. I also broke the ring finger on my right hand once. I was outside and the dog, Lizzy (who I still have) took off to run away and I tried to catch her by her collar. When I did my finger got hung in her collar and was broken. One more... I had a piece of bone cut out of my left wrist during my surgery this summer.)

There. I hope that wasn't too boring for you. I'm not going to tag anyone, because I think just about everyone has already done this. But, if you haven't and you'd like to, consider yourself tagged.

Saturday, November 11, 2006

A Four Year Old's Perspective

First, Daniel wrote a short post about diabetes. I thought it was great. Then Scott commented that he couldn't wait until Riley could do a post. Since he's only 4, that would be awhile.

So, I decided I would interview Riley. There are some "getting to know you" questions and also some questions about diabetes.

#1) What is your favorite movie?
"Garfield: A Tale of Two Kitties"

#2) Favorite TV show?
"Tom and Jerry"

#3) Favorite food?
"Dinosaur oatmeal"

#4) Favorite song?
"Get Back, Get Back (You Don't Know Me Like That)

#5) What did you do yesterday?
"played Fusion Frenzy and watched Spongebob"

#6) What is your favorite thing about Mommy?
"Her hugs"
"He loves me."

#7) What is your favorite sport?
Favorite team?
Favorite player?
" David Ortiz"

#8) Is it hard having diabetes?
"Cause you have to give you insulin and check your sugars."

#9) Is there anything good about having diabetes?
"Yes. You change your needles, cause that's what you're supposed to do."

#10) What is the worst thing about having D?
"giving shots"

#11) Can you eat anything you want?
"No. I can't eat poptarts and sugar."

#12) How do feel when you're sugar is low?
Does it hurt?
"Well, my tummy does."

#13) Does it hurt to check your sugar?

#14) Do you like wearing a pump?
"Yes. Cause you don't have to take two shots."

#15) Do you think there will ever be a cure?

#16) What will you do if there is a cure?
" When they send it to us I'm going to eat and drink whatever I want."

#17) What would you say to another little boy or girl who just got diabetes?
"I'm sorry you have diabetes."

That's my boy.

Friday, November 10, 2006

Some thanks

I just want to say I've enjoyed reading each and every post on D-blog day. You guys are great. I'm glad I found you. Thanks for sharing your lives with me.

And, thank you to those of you who have put the diabetes ribbons up on your blogs. I smile every time I see one.

Thanks also for your responses to A Mother's Perspective. They helped me more than you could know. It really helped to just get it all out and know that you would understand or at least try to.

I love you guys!!!!!!

Thursday, November 09, 2006

My D-blog Post

It’s D-blog day.

When I first got up this morning, I wasn’t planning on writing anything. My last post still has me a little spent. Bringing all those bad thought to the forefront where I had to examine them was not a pleasant experience. I’m still a little down from it all.

But, as I was sitting on the couch this morning drinking my coffee, I started to think about that last post. It was a little gloomy, but it was honest. It was very hard for me to bare my sole like that.

Then, I got to thinking. What if someone new to this disease read that post? What would they get from it? That being the parent of a diabetic child is always heartbreaking? That’s not what I want to convey.

I’m somewhat new to this myself, in comparison to the other parents out there in the blogasphere. I’ve had diabetes in my house for 13 months now. And this November is nothing like the last.

I don’t like being negative. Not when there are so many positives in my life. I don’t want other parents who’ve been living this for a few weeks or a few months to think that they are saddled with a life a gloom and doom.

That is not the case at all.

Those first few months were just terrible. It just felt like a never-ending battle. A battle that I was sure I was destined to lose, a battle for which I felt so ill equipped.

But, as the weeks and months went on, each day was a little better than the last. The breakdowns didn’t come as often. But, to be honest, they still come occasionally. I would be lying if I said they didn’t.

I kind of picture it as a roller coaster ride. In the beginning there where a lot of ups and downs, more downs than ups. But, as time went on, I spent more time on an even keel. Those even places tend to have more curves in them. But, you learn to brace yourself, lean in, and go with it. The dips don’t last as long either.

What I’m trying to say (and doing a poor job of it, I think) is that it does get better. I joined the OC, sometime in November or December of last year, I think. And, at that time, I kept hearing, “It will get better”. And I kept thinking, “When?”

No one can tell you when that moment will come, but it will. That moment when you don’t feel like this disease is beating you up all the time, the one where you feel like you’re living your life again.

My life is full of wonderful things. I am so blessed beyond measure. I have a wonderful, loving, understanding husband. He is my best friend. I can tell him anything, and, even if he doesn’t understand, he loves me anyway.

I was blessed at a young age with a wonderful son. He and I grew up together. He taught me what true love is. Some people never know. I learned in a hospital room at the tender age of 17. I am so proud of the young man he has become. And, I look forward to see him grow into an adult. I’m excited to see what waits around the bend for him.

Eleven years after Holden, Riley came along. I worried before he was born how I would ever love him like I did Holden. I was worried that there wouldn’t be enough love to go around. But, the moment he was born, my heart grew a little and there was plenty of room for all that love.

I look forward to seeing what Riley will become too. I know it will be something great, because he is a great kid.

I’m crying again now. But, this time it’s not tears of sadness. It’s tears from having realized that my life is blessed and full of love. And, all that love I have, no one can take it away. Not even diabetes.

Tuesday, November 07, 2006

A Mother's Perspective

I can’t post about what it feels like to live with diabetes. I don’t know what a high of 400 or a low of 40 feels like. I don’t know what it feels like to prick your finger upwards of 10 times a day. I don't know what it's like to give yourself an injection just to have a little snack. I just don’t know.

I wish I did.

You don’t know how badly I wish I did. If I could take all those highs and lows, if I could take this disease from Riley and keep it as my own, I would. I wouldn’t think twice about it.

But, I can’t. You don’t know the nights I’ve spent praying, “Please God, just take it away from him and give it to me.” It just doesn’t work that way.

I’ve asked others to write about what living with diabetes means to them. I can’t do that, but I can tell you what it’s like to live as the mother of a child with diabetes.

First, I want to state that I am not writing this trying to get sympathy. I am not the one with a chronic disease. I’m just the one handling this disease until Riley can handle it on his own.

This post is hard for me to write. To write this post, I will have to ponder the bad things. The things I try to keep tucked in the back of my mind, the things that somehow find their way into the forefront sometimes. The things I try to keep locked in
the box.

When Michael and I got married, we were not planning on having anymore children. We already had Holden, who Michael later adopted. I never planned on having more children and Michael was fine with that.

But, a year and half into our marriage, I was late one month. I'm never late. We just knew I was pregnant. It was not planned. I took a pregnancy test. It was negative.

We were both a little disappointed. Turns out, once faced with the possibility of having another child, it sounded great. A couple of weeks later, we decided to try to have a baby. Two weeks later, I was pregnant with Riley.

I shared that story with you because diabetes has taken one of the happiest moments in my life and tainted it. When I think back to the beginning when I was first pregnant, I can't help but feel a little sad for what was to come.

Don't get me wrong, I wouldn't change it. Knowing what I know now, I would still do it all again. Riley and Holden are the best things that have ever happened to me. But, when I think back to Riley's birth, I can't help but think, "We had no idea what was coming down the road."

My desk at work is covered with pictures. Many of them are pictures of Riley before diabetes entered his life. Every once in a while, I catch myself staring at them and thinking, "We were so happy and carefree then." Sometimes a tear will slip out because my heart aches to have back the Riley that didn't have diabetes. Not that I don't love the Riley with diabetes, I just wish he didn't have to deal with this disease.

You see, I'm basically a happy person. But, diabetes sneaks a jab in almost on a daily basis. Sometimes I'll just be sitting on the couch and Riley will run through the living room and the thought will cross my mind that he has diabetes. A sadness overcomes me.

Almost everything is bitter sweet, vacations, soccer games, Christmas, all tempered by diabetes. Every single thing in our lives has diabetes hanging over it. I have to look through the diabetes fog just to see what's going on.

The best thing about this disease right now is that it doesn't consume Riley like it does me. He doesn't have to count carbs or try to figure out how much insulin to give. He doesn't wake up several times a night to test sugars. I do all of that for him. I'm happy to do it.

That way he doesn't have to worry. He feels the lows and the highs, but he doesn't have to worry about what to do about them. He picks out what he wants to eat without worrying what it will do to his sugar. That's my job. Worrying, watching, praying, hoping.

But, the pain comes from knowing that one day, all of this is going to be his to bear on his own. If I could handle it all for him forever, I would. But, that's not very practical.

So, I've begun teaching him a little here and there. He can tell you what to do if his sugar is low or high. He can test his own sugar and read you the number. He hasn't quite figured out what's low and high yet, but that will come.

Teaching him to care for himself is a necessary evil. It's painful to watch him struggle to get the strip in the machine. It's painful to watch him poke his own finger. Even though he says it doesn't hurt, he still scrunches his face up everytime he sticks his finger, just bracing himself for the prick of the needle.

I don't worry about future complications all that much. They cross my mind occasionally, particularly blindness and kidney failure. But, if they come, it will be farther down the road. I have too much of the here and now to worry about.

I worry on a daily basis that something bad will happen to Riley. There is always that possibility of a low. It's always lurking. If Riley feels the low, he will often say "My head feels funny." Several times a day I find myself asking, "How's your head feel?"

I worry about Dead in Bed syndrome. I can't help it. I read a post by someone else (I don't remember who right now) that said their mother called them every morning to make sure they had woken up. This person didn't understand. Dead in bed syndrome is not all that common, they said. But, I understand. It's there. It happens.

Michael and I take turns getting up to check Riley's sugars during the night. Depending on how his sugars are, we will test anywhere from 2-4 times a night. It's usually only 2 times though.

But, when it's my turn, I walk in and turn on the light. As I'm turning on the light, I stop breathing for just a moment. The first thing I do as soon as the light clicks on is to look for the rising and falling of Riley's little chest. This means he's breathing. It means he's alive. I do this every. single. time.

I'm terrified of finding him dead. I just can't help myself. I really do brace myself for it everytime I get up to check his sugar. I've never told anyone that before. Michael doesn't even know. It's just a terrible fear that I have. One that won't go away.

I worry about him going into DKA. Even though I keep a close check on his sugars, it doesn't mean it can't happen. A little bug that would keep most people down for a day or two, could kill my child. Riley getting the flu is one of my worst nightmares. Even though he has had the flu shot (as have all the rest of my family), he could still get the flu or a terrible virus.

Both would wreak havoc on his sugars and could make them uncontrollable. Several months ago I got an email from another mother who had just learned of someone whose 8 year old grandson had died from diabetes. He had gotten sick and gone into DKA. As a result, his brain had swelled and he had died. 8 years old.

You can just never feel like you're in control with this disease. I try to fool myself sometimes into thinking I can handle anything that diabetes throws at me. But, I can't. I can't handle losing my child.

I can't imagine living my life without him.

But, on a daily basis, it crosses my mind that one day, I may have to.

Another post to look at...

Also take a look at this post from Bernard. He makes some good points and has a challenge for you.

Linkity, link, link

I have read a few posts by people who tell what living with diabetes mean to them. If you have written a post about this, please let me know. I would love to read it.

Vivian and Sarah have both written excellent posts. Please go and read them.

Also, I have something else I'd like you to take a look at it. I found it at Scott's blog, who got it from Martha O'Connor's.

It is heart-wrenching. If you are a person with diabetes that doesn't believe in a cure and that isn't doing anything to help find a cure. Go here and see if it makes you feel differently.

I'm assuming that only adults read this blog. But, this disease mainly strikes children. It steals part of their childhood. It makes them have to be responsible way before their time.

Go and look at these faces. They are our reason to fight.

Sunday, November 05, 2006

The ribbon

Here is the diabetes ribbon that I promised. (Now if I can only figure out how to put it in my sidebar.)

Copy. Paste. Post.

Also, I just got through reading Scott's post. He took my words to heart and wrote about what living with diabetes means to him. I think he did a great job.

Go. Read. Cry.

Friday, November 03, 2006

National Diabetes Month

As a health care professional and a mother of a child with diabetes, I would be remiss if I didn't mention that this is National Diabetes Month. Yep, that's right, every year in November.

So, where are all the, um, is it gray ribbons? (Are you sensing my sarcasm here.) You see, because I am a nurse, I will often come to work and find a little ribbon or pin on my desk to wear to show awareness of a certain disease or awareness of child or spousal abuse or whatever. In November...nothing.

To be honest, November was almost over last year before I found out it was NDM. Honestly, 9 years of nursing and I'd never even heard of it before. I was still very new to this disease last November. I was still trying to wrap my mind around the fact that my 3 year old has a chronic disease. (Wow, it still hurts just to type that.)

This year, I knew from day 1, but still, nothing had really changed from last year. Last month was National Breast Cancer Month. Pink ribbons were everywhere. (I received a pink ribbon and a pink bracelet for October, by the way.) I saw several pink products in stores (candles, etc.) that if you purchased, a certain percentage of what you paid would go to breast cancer research. You don't know how many times I thought, "Wow, I'd like to know who's in charge of all this". I'd love to talk to them about diabetes.

Don't get my wrong. Breast cancer awareness is very, very important. And, because of this wonderful campaign, I'm sure some women's lives have been saved. I don't want to take anything away from other diseases. But, I want diabetes to have it's day (or month) in the spotlight too.

Is this so wrong of me? The problem is, what do I do about it? I mean, I'm just a mom with a little blog who loves my son (and the others I've met with this disease). I'm not a national corporation with lots of money and lots of pull.

Maybe it's the nurse in me, but I believe education means power. You can't fight a disease if you don't know anything about it. You can't have compassion about it, if you don't know what people with that disease struggle with on a daily basis.

There are a few problems with this, however. For one thing, I think diabetes isn't seen as being so bad. I mean, it doesn't kill you, right? (Sarcasm again there.) That's what most people think. Most people think it's a pain in the butt to deal with and well, the daily shots and finger pricks are just horrible. [If I hear, " I couldn't do that to my child" one more time, I will just scream. Come on people yes you would do that (stick them with needles several times a day) because you have to. If you don't, they would die. Sorry, that's another post, I think.]

Also, I think people that live with this disease on a daily basis, don't want to draw attention to themselves. Not that they are ashamed of what they have, but that they are just living their life, focusing on what they have to do to survive. Not thinking about what might be down the road, focusing on the here and now. Some are focusing on the cure in the future, but will that cure come without educating the general public as to why they should donate to that cure?

Or maybe it's because people think it could be much worse. Riley could, God forbid, have terminal cancer. But, you know what? He also could go into a diabetic coma and die at the age of 4. He could have a seizure from a low and suffer brain damage. He could suffer a hypo in his sleep and never wake up again. While all of that was very painful to type (I'm crying now), it doesn't change the fact that every word I just typed is very, very true.

While I was researching for Walk of Hope, there was one statistic that stuck in my mind and it's one that still haunts my thoughts every once in a while. It came from the JDRF site. I don't remember it word for word, but it was something along the lines of "Most people who live with Type 1 diabetes will have complications from the disease after 20 years." Of course, that sounds bad, just by itself. But, when I put it on a personal level, it hits me right in the gut. Riley was 3 when he was diagnosed. That means that, statistically, by the time he's 23, he'll have some form of complication from this stupid disease. 23. Just finishing college, just really starting to live. That doesn't mean he will, but the odds are not in his favor. Even with a normal A1C, his sugar still runs high after eating. While insulin is great, it is not the real thing and does not work as quickly as we would like. That is why I try not to check Riley's sugar too soon after eating. Those high numbers are just too hard to swallow.

See, these are the things the public needs to know. But, one last problem with that. The general public just doesn't care. We are all so wrapped up in our own lives that other people's problem aren't hardly even a blip on our radar screen. For example, a year and half ago, I wouldn't have been nearly as passionate about it as I am now.

That's why the breast cancer campaign is so great. It was kind of shoved down everyone's throats (in a nice way of course). You have no way to avoid it. It's in the forefront in October. It's in the media. It's even in the grocery store on some of the foods you buy. (ever seen pink M&Ms?)

That's what I want for diabetes. If I have to shove it down people's throats, I don't care. I'll be sure that they don't choke on it, of course, but, by goodness, they need to know what millions of people live with on a daily basis. People need to know why they should do something to help them.

Like I said before, I'm just a little ol' mom with a little 'ol blog. But, I'm going to do what I can. I am going to post a picture of the diabetes ribbon and encourage you to do the same on your blog. I'm not sure if you'll be able to copy it off of my blog. If not, you can go here and get it like I did.

But, don't just copy it and place it there just so people can look at it. I encourage each and every one of you, in honor of this month, to write a personal post about what diabetes is to you. Why it is so important for the public to get involved with fighting this disease too.

It has to start with us. We have to care enough about ourselves or our children to want to make people listen to us. Make them understand why this is so important.

So, post the ribbon. Also, ask others to post it on their blogs. Let's spread this outside of the OC. I know other people read some of your blogs that don't have D and they have blogs of their own. If you are reading this blog for some reason and you have a blog of your own, even if you have nothing to do with diabetes, please post it on your blog and at least mention that it's National Diabetes Month. If someone would like to make a donation in honor of National Diabetes Month then here are a few links: The Iacocca Foundation and JDRF are for Type 1 D and The ADA cover both Type 1 and Type 2.

Thank you in advance for doing this.

One of my favorite songs of the moment is "Waiting on the World to Change" by John Mayer. Every time I hear it, I think of diabetes.

Waiting on the World to Change by John Mayer

me and all my friends, we're all misunderstood
they say we stand for nothing, and there's no way we ever could

now we see everything that's going wrong with the world and those who lead it
we just feel like we don't have the means to rise above and beat it

so we keep waiting, waiting on the world to change
we keep on waiting, waiting on the world to change

it's hard to beat the system when we're standing at a distance,

so we keep waiting, waiting on the world to change
now, if we had the power to bring our neighbors home from war
they would have never missed a Christmas, no more ribbons on their door
and when you trust your television, what you get is what you got
cause when they own the information, oh, they can bend it all they want

that's why we're waiting, waiting on the world to change
we keep on waiting, waiting on the world to change

it's not that we don't care, we just know that the fight ain't fair
so we keep on waiting, waiting on the world to change

one day our generation is gonna' rule the population
so we keep on waiting, waiting on the world to change

I, for one, am sick of waiting. Are you?

(**side note: blogger is once again being very uncool this morning and not letting me post my ribbon.. the ribbon will be forthcoming. Until then, use my link and try to post it on your blog. Maybe you'll have more luck than me. Blogger just doesn't like me. I'm trying not to take it personally.)