New name for Type 1 Diabetes

We just started our second year with diabetes and it already feels like a lifetime.  Our everyday language and conversations has dramatically changed.  We never had to take time out before each meal to count and measure what we were eating.  Our language now contains questions, "What's your number?", "Is he high?", "Is he low?", "How many carbs are you eating?", "Have you checked your blood sugar?" and the list goes on.

I have let him do the things he wants to do.  This summer he got signed up for 3 camps.  I had a few people tell me how brave I am to let him go.  But I figure, your only a kid once and he has to learn how to live with his diabetes.  It isn't easy for me to let him go.  The biggest reason is that people just don't understand what diabetes is.  They don't understand how serious it is.  They also don't understand that we are only a little more than a year into this and he is not responsible for himself.  He needs someone to remind him to check his blood sugar, to count his carbs and to plug all that into his pump.When he was gone to the first camp this summer, he did pretty well.  He had one day where his pump site came off and he couldn't get it to stay on.  (He might have had better luck if he would have showered more often. :)) He tended to run on the lower side. Then came Bible camp.  Here there is one counselor for 6 or 8 boys.  I talked to the counselor and told him that Nathanael needed to check his blood sugar regularly.  His sister was there so I figure if there were any problems, she would be able to help.  Well, at the end of the week, I find out how camp really went....AWFUL!  He took his pump off on Monday and switched back to shots.  This would have been fine, if he was checking his blood sugar often.  Nope, one day he only checked once!  His sister also told his counselor that he needs to be reminded to check his blood sugar.  He ran really high the whole week, except for the one 39 that happened at 10:30 at night.  That was the day he only checked once.

Ever since he has gotten back from Bible camp, I have been trying to figure out what to do about camp next year.  How do I explain to the counselor that this is serious?  Well, today, I figured that I will no longer say he has diabetes.  I will say "He has a condition where his pancreas is broken and does not produce the insulin that the body needs to break down carbs.  He has to check his blood sugar to make sure that he isn't going too high or too low.  If he doesn't, he can die."  People just don't understand what diabetes is.  I am fortunate enough to live where we don't get questioned too often about what we are feeding him or how we are treating his illness.  We have a good school nurse who keeps a good eye on all the kids in school with T1D.  But how do I make the rest of the world understand.  I understand that the only person in this world who can take care of Nathanael is Nathanael but I count on adults to watch over him.   I count on the adults to hold him accountable.

So from now on, my son doesn't have Type 1 Diabetes, he has a condition where he can and will die if he doesn't pay attention to his blood sugar.

Perfect number

When I checked Nathanael's blood sugar yesterday morning, he was over 300. His site had fallen out during the night. He kept that site in for 6 days so it was time to change anyway. It took all day for him to get down into the 100's.

Before he went to bed, his blood sugar was 255. I wasn't too concerned because he has a bowl of sherbert an hour before and he still had active insulin.

I checked him at 2 to make sure he had come down. Not really. He was 231. So I plugged that into his pump and gave him more insulin.

Now it's 7 AM. I checked him to make sure he was lower. Yes he was lower, 100 to be exact! This is only the second time he's been a perfect 100.

Busy Summer

It has been a couple of months since my last post.  Nathanael started on a pump the end of April and things have gotten a lot easier and better.  His numbers have been lower and he isn't as hungry.  He is still growing like a weed and diabetes seems easier to deal with.  On the other hand, there are a lot more worries.  It feels like we are starting all over again back to day one.  We are continuing to make adjustments to his settings to stay in range.  I get up two times a night to check his blood sugar to make sure he isn't going low or getting too high.  I'm trying to let go and feel comfortable with where he is at during the night.  I have only gotten up a couple of times this week and only one time a night.

School is out and like many parents, I struggle with what to do with my kids.  Both kids go to Bible camp but that is only one week during the summer.  This year I decided that Nathanael was going to go to Diabetes Camp and with the generosity of my mom, he is going to do that too.  He mentioned that he wanted to go to band camp also.  So I got him signed up.  When all was said and done, he is going to camp every other week starting in June and going through July.  I'm glad that he will be busy this summer but it makes me very nervous.  In our year with diabetes, I have come to realize that the only person who will help Nathanael take care of his diabetes when he is away from home is Nathanael.  But who is going to make sure he is okay during the night?  No One.  So I try to educate him as much as possible and just hope he is listening to me.  We all know how well teenagers listen!  The first big test came the week of June 22.  He was at band camp.  He was able to text me and call me as needed.  I was extremely nervous!  My husband thinks I'm psycho  because I worry so much.  But I just don't know if Nathanael was listening to me.  I told him to at least text me his number before he goes to bed.  We discussed what number is a good number to go to bed. Long story short, he survived the week and so did I.  He had a lot of lows during the day and only a couple of highs (low 200's so really not too bad.)

Now I'm preparing for Bible camp.  He will not have the ability to get in touch with me when needed.  He is completely on his own.  His sister will be there so that gives me some comfort.  It is my hope that he stops long enough to take care of himself.  I can educate his counselors and the nurse as much as possible. But it ultimately comes down to he needs to do everything himself.  He needs to remember to test his blood sugar the bare minimum of 4 times a day; breakfast, lunch, dinner, and bedtime.

After Bible camp, he will be home for a week of appointments.  He has to get his yearly blood work done, follow-up dentist appointment on his new braces, his 15 month check up, and finally another appointment with the diabetic educator.  Then we pack again for diabetes camp.   Why couldn't diabetes camp be first?  Oh well, I hope he learns a lot from diabetes camp and has a lot of fun.