Support Group

We all went to the CHLA diabetes support meeting last August, after K had been diagnosed for less than a month. I wanted to be there for K to meet other children with diabetes and for us to meet other parents with children with diabetes. (Notice I don't say "diabetic" very often? It's one thing I've learned from other t1d parents - is that our children are so many things; they aren't "diabetics", they "have diabetes" - but I'm not going to be uptight about it or correct you if you call her "diabetic".) However, I so did NOT want to be at that meeting either. I didn't want to be at a park with strangers talking about diabetes because I didn't want my daughter to have fricking diabetes! (Was thick in the denial stage.) But, in the end, we were happy we went. We met some really nice people, who were amazingly supportive (hence the name, "support group"). They all could identify with that early stage of shell shock we were experiencing. We all spoke the same language although my husband and I weren't quite fluent yet.  We also felt slightly discouraged at that meeting; we got home and realized - it never changes- we just get used to it. And in the seven months and one day since she was diagnosed, that is exactly what has happened.

For scheduling, irrational, and/or emotional reasons, we never went back to another monthly support group meeting until yesterday afternoon. We saw a few familiar faces, met more people - including some who live walking distance from our house, and the kids had a blast. We learned new things, thanks to the amazing doctor who leads the group - including, much to my dismay, that K's numbers will be more wonky once she's done "honeymooning". They call the period after diagnosis the "honeymoon" because the insulin producing beta cells in her pancreas are still functioning. This period can last weeks, months, or with good control, more than a year. And despite the inconsistency of when the beta cells are producing insulin during this honeymoon, we learned yesterday that once she's out of the honeymoon, her BG will be harder to control, she'll have more (high and low) swings, she'll have more risk for hypoglycemia, and higher overall BG.  For some reason, because I live day to day with this - not really thinking about the future in an educated sense - thought once her beta cells were kaput, she'd be more stable. But, there's absolutely nothing logical about t1d. NOTHING.

One more point of interest from the support group, which takes place in Pasadena, conveniently, just for us ;) : a family came all the way from the South Bay who have an 11 year old daughter, diagnosed for over 9 years to their first ever support group. They said she's always been great about her care and not self conscious, until this school year. It was heart wrenching to hear the father talk so openly about the struggles they were having (an fyi, the children play in another room for most of the meeting). And, selfishly, despite my line above about about living day to day, my head cannot help but wander to adolescence with our own child. 

When I tucked K into bed last night, we talked about the fun girls with whom she played who had t1d like her, all of whom were older and doted on her. She smiled and then said, "I don't want no diabetes." Rather than correct her grammar, I told her that I wish she didn't either and snuggled her. She then asked, "Will it ever go away?" (like a cold...) and I said that hopefully, they'll find a cure, but for now, no, it won't go away.  I gave her a kiss and was happy I could tear up outside her room.

Still stressful

So K has had the pump for over 5 weeks. It has made such an improvement to her and our lives as I detailed in my previous post. However, it is still not perfect. We have had two recent experiences to rattle our nerves.

First, this past Monday night, her BG was a very high 323 mg/dl at midnight. We of course gave her insulin to bring her down and three hours later, she was even higher: 367. Our guidelines for rare occasions such as this is to assume there is a problem with her infusion set. So we had to bring her down old school style (hello syringe) and change her infusion set -at 3:00 AM. She did not enjoy any of it and neither did we - it's a rather time consuming process and a little harder when we're half-awake. We also checked her ketones because ketoacidosis can occur pretty quickly --but she luckily had no traces of that (we test her, easily, but sticking a little test strip in her urine). We then had to check her two hours later. I don't know how I was able to function yesterday - so tired!

The second stressful event occurred the next day (yesterday) when she was high again, mid-morning at preschool. I walked our great preschool director through dosing her with the meter/remote - as I've been able to do since K got the pump (which is SO incredibly liberating!!) - and K received the recommended amount of insulin. A short while later, she was to get her "free carb" that she gets every mid-morning. At this point in her routine, she gets 10 -12 grams of free carb every day at that time to keep her from going too low - whether it's because her body is making a decent amount of insulin at  that time, her hormones aren't over producing (like they do after bed-time), or because she's more active at that time of day - who knows - but it's just what we've been doing pretty much since she was diagnosed. Anyhow, yesterday, she did not eat all of her free carb (cheerios) and I should have known while we were driving home that she was low because she was especially irritable. Lesson learned: pull over, check her. Don't continue to drive. Don't stop at Ralph's to pick up a few groceries because it is conveniently located on the way home. When we got home and I finally checked her, her BG was a freaking 37 mg/dl!!  I was floored. I was guessing she might be in the 50s based on her behavior, but never thought that low. How was she even conscious?? I immediately gave her three glucose pills and she devoured a whole apple. Her blood sugar rose immediately to an appropriate level. I also discussed with her teachers and the preschool director today that she NEEDS to have that free carb. If she didn't want the cheerios yesterday, I need to be called and we can figure out how much of something the school has on hand for her to have.

Lots of learning still going on and still plenty of stress.