Monday, June 29, 2009

Camp Lo-Be-Gon

Well, we did it....she did it, really. She's at diabetes camp. We dropped her off this morning. It is not overnight (mom extremely grateful), but will be 4 full days of hiking, and canoeing, and archery, swimming, education, crafts, etc.

I won't lie...I cried. I started to sob, but choked it back quickly when we pulled up and I saw all of the kiddos with diabetes (and their siblings). I can't explain how it felt. It's Sophie's first time to be around other kids, well little girls specifically, with diabetes. Now, I am a bit nervous about the swimming and letting strangers be the ones in control of watching her there, but that's probably my biggest concern. And last week at VBS, she choked on a life saver. I'm guessing they're life-savers because they have the little hole in the middle, so when they're lodged in your throat you still get a little air. Totally freaky experience as she thought she was dying (even said so through the little hole). I nearly cancelled our reservation at the camp, because I thought I'm just not ready to relinquish that much control over her to others' care. Near-death experiences, no mom nearby...just not ok with that. But, as you can see by the beginning of this post, I've tried to let go of that notion, and just trust God to protect her and threaten the counselors with severe pain if something happens to my girl. Ok, I didn't go that far, don't worry

Here's why the emotions, I think. Diabetes has been such a pain in the patooshki (as we say around here) for the last 9 months. As I've said many times before, it's a life-changer and often so difficult. But, it's a badge of honor for Sophia. It's something she has gotten through with grace and strength. It's all-consuming and something that invades her every time she has to prick her finger, get a shot, report she feels "shaky," change her pump site, or unplug or replug to swim or take a bath.

This is her life. She's so, so proud of herself, and wants everyone she meets to know she has diabetes and now to see her pink pump. The day after she got it, we were at a homeschool event and she was showing all her friends. They mostly just stared at her with confusion and a little afraid in some cases. One girl looked at her so excitedly and exclaimed "Oh, yay! You got a camera!!" We've been in public and she'll insist we tell a stranger that we happened to strike up a conversation with that she has diabetes and a pink pump. She doesn't get it that it's a little akward to bring that up to strangers, so we usually find a way to tell them, just to make her happy, even though it does end up being, well, akward. She thinks all kids she meets should be so excited about her pump. Needless to say they don't get it. She handed it to our little friend who's nearly two the other night, and the friend promptly yanked it, because it looks like a toy. Now, we totally understand that kids just don't get it.

She got to show off her finger-pricking and educate 13 kids at VBS all about diabetes. She even explained how her pancreas doesn't work, but their's does, and she has to keep track of her blood-sugars to make sure she's ok. They all just stared at her and one kid yelled, "Ooh! Is it contagious?!!" I felt sorry for her. I feel sorry for her every time she akwardly shoves her pump in some kid's face, and they look at her like she's weird, and she's just soooo proud. It doesn't make her sad though. Somewhere inside, she knows they don't understand, but she's going to tell them anyway.

So, back to today.

Wow! To be a totally and completely normal child. To be just like everyone around you. I'm crying just typing it. It's amazing. I'm so happy for her to meet some friends that are 6 years old, and have diabetes, and are on pumps or shots. She's in a group of about 10 little girls with 2 adult counselors, and it looked like 2 teen counselors and they ALL have type-1 diabetes! She's completely accepted and completely normal. Now, the nurse gave me bug-eyes when I told her she gets hives and asthma often outside in grass, and around animals. But, that's ok. Lots of kids have allergies and asthma, and I'm sure she'll be just fine there. (That used to be a big deal to me before October 6, 2008).

Well, here's hoping I can not obsess on these things all week, and can just get some things done at home. Say a prayer for her this week. It's a big deal. Oh, that was the best picture I could get of her with Jossie hugging her good-bye. She has been so excited for 2 weeks telling everyone she's going to diabetes camp, but today after she changed into her new t-shirt, she got pretty quiet and nervous. She left me without tears though......

Sweet girl.

Friday, June 12, 2009

Going Well.

I am quite exhausted, so blogging hasn't been a high priority, but overall, the pump process is going quite well.

We had to switch infusion sets, which is the needle or canula that stays in her fat layer on her bottom. The needle version was waking her up at night and leaving big bruises from where she'd hit it hard when rolling over on it. The nurse tried to tell me that it was psychological, and referred to her as "the princess and the pea." Whatever. I say, until we walk a mile in her shoes, we can't really say, but that's just me. Anyway, we switched to a softer canula tube and she hasn't complained since.

The pump has really done a great job at keeping her blood sugar in "normal" range. I put it in quotes because it is still nothing like our normal, but it is under 200 most of the time, and I can tell she feels better. Her behavior is so much better. It makes me tear-up when I think about how different she is the last 2 weeks. She is calm and reasonable, and sweet. It's really precious and it makes me wish she'd gone on the pump sooner. But, there's no use in looking back.

I'm exhausted because I still have to set an alarm every night at 2 am to check her and make sure she's not crashing. We've only had to wake her up once to force some carbs in her, and she really didn't like that. She doesn't wake up well, so it took a long time of her being angry and screaming before she realized she had to ingest something. The next morning she didn't even remember it.

She has had more "lows" on the pump. This is where her blood-sugar dips below 70 and she has to get some carbs. It seems to happen when playing or exercising, and we just haven't mastered the art of properly carbing beforehand. One day she didn't quite finish her cupcake and we got distracted. I left for the store, and Joe was busy working on the yard. She was watching a movie with Mamaw (and this is often a distracting time for her to not realize something's going wrong). She finally started panicking and running around calling for Joe. When he tested her, she was 34! She was starting to pass-out when he came back in the room with juice. Luckily he got her to wake up enough to drink it. It freaked me out though. Mom called me to come home, and everything was fine by the time I got there. But, it was a yucky reminder of the seriousness of diabetes and the fact that things can go wrong fast.

It's those moments that have me wondering if I'll ever be able to fully relax about it and trust myself with the disease. The fact that kids play hard and are constantly growing adds so much to the factors that can throw things off. Maybe when she's an adult it will seem more predictable.

She still complains of her tummy hurting most days. We can't see the GI doctor until September, so we just have to wait until then to see if it's celiac or something else, or hopefully nothing at all.

Well, off to least for 2 hours. Woo-hoo! Nothing like nap-sleeping.