I remember one of the funny things...probably THE ONLY funny thing in the hospital was when Lydia said, "Can I look at my food now?" They always brought her lunch, made her decide how much she was going to eat, calculate the carbs, give her insulin and then she had to wait 15 minutes to eat. Ya...her food was nice and cold. Bleh. The 15 minute rule is still annoying.
Carter and Cole ended up at Aaron and Lisa's house and we had Jake in the hospital with us. Boy was that fun.Fortunately while we had our classes there were volunteers at the hospital who came to watch Jake. It was marvelous. I don't think I would have learned a thing, had they not had angel volunteers.
We set off for home on Wed late afternoon and made our first "out of hospital to eat" trip to Subway. It was a bit stressful, but you have to make it as low key as possible to help Lydia. She has been absolutely great about the whole experience. I also can't believe how much and how fast Lydia has gotten healthier and gained weight! It's amazing. I've read some neat things about the beginning of insulin and how it helped dying children just pop to life. Amazing the medical advances that it has made in such a short time and the possibility of cure.
Well, three weeks later we had Lydia's follow up appointment. That was interesting. The doc was great and answered all of our questions. And then he decided to throw some crazy test results in at the end. She tested positive--very positive for celiacs disease. However, she hasn't been showing any symptoms... So we are hoping and praying that it is a false positive. Doc said her body was pretty messed up when she came in and so it's a definite possibility. I'm pretty sure that would break her. But so far, so good.
They also did a test to see how many anti-bodies were in her blood to see how much of her immune system is attacking her cells. Most people who come in first diagnosed and sick, like Lydia, have 3 or 4. But Lydia had none. So that throws out the whole "auto-immune" disease. They said they will still call it and treat it as type 1 diabetes, but she is in a very very rare category for type 1. The doc also said that we have .7 insulin in our bodies. When kids are sick and first diagnosed they are at .4 or .3 but when Lydia was tested she was at .1- which means she had hardly a trace of insulin in her system. Not good. She is a freaking walking miracle.
Lydia decided she wanted to talk to the school about her diabetes. Very smart, afterall I'm sure all the kids in her class are wondering why she's poking herself all the time. So Jeromy, Lydia and I prepared a little something for the two oldest classes and it went really well. That's what I call taking control of her diabetes.
I have yet to mention our "pricker" problem. If it isn't bad enough to get sick and almost die, but then to find out you have a chronic disease that you must manage every hour of every day for the rest of your life-- only to come home and have "pricker" problems. The prickers they used in the hospital just weren't the good ones. And how are we to know that?! By the time we get home the tips of her fingers are bruised and super sore. So having to prick her is a nightmare. And then you prick her and she won't bleed. So you prick her again, and again and again. I'm telling you it's the worst thing ever.
One specific night we got home late and I was trying to 'hurry' and calculate carbs and figure out her dinner stuff and I had to prick her FOUR freaking times. On the third time I said that if it didn't work I don't care and she can just eat. Luckily by the fourth time she did bleed. But I was feeling really bad and frustrated and apologizing and she said "I know it's not your fault." What an angel. She is so strong and has never complained.
Another time I want to share was when Lydia and I stayed home from church and we were having a little chat at lunch. She said to me that when they were putting in her IV that she would tell herself that she's happy Carter and Cole don't have to do this. She would rather have to do it than them. Speechless. This girl has me speechless. Well, actually after she said that I just cried. Carter and Cole don't know how wonderful of a sister they have.
We have seen a lot of love from family and friends and ward members. Three dinners were brought in. Presents, calls, texts. So much love.
So here we are almost two months in and doing good. Lydia has really taken good care of herself- she can count and calculate her carbs and give herself insulin shots. She REALLY hates the Lantis she has to take at bedtime. I just try to get it over and done with quick so there's not much fuss about it. We are still getting up in the middle of the night (3am) to check her BS. Jeromy has been doing it a lot, because I'm up with Jake a lot (still) ugh.
On top of Type 1 Diabetes we were called in by the Stake President to switch wards. We are now in the Rocky Reach Ward and they have asked Jeromy to be Bishop of the Columbia Hills Ward. So they are doing a boundary change to make it happen. They made the official boundary change last week, at stake conference. Today was our last week in RR ward and next week will be our first week in CH ward and then the first week of March, Jeromy will be called as Bishop. I always knew he'd be a Bishop someday- no real surprise there. But, in a ward we aren't even in?! AND a month after our daughter has been diagnosed with a chronic disease AND in a struggling ward to top it off.
We haven't told kids about Bishop yet, they shed some pretty sad tears when we told them about the boundary change. It will be hard....our rough year is just beginning! I'm trying to be optimistic about our new ward and having to share my husband with them. I do hope tho, that this ward will welcome us and accept Jeromy's call and that it won't ruffle any feathers! I know Jeromy is qualified, I'm just not convinced I am!
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