I'm not sure what's going on with my iPhone but I can't get pictures off so I'll just upload them later.
Latest breaking news: Ellie turned 9 months old on the 2nd! She got another tooth! We finally got our assignment and it's to Wright-Patterson AFB in Dayton, Ohio! Ellie started growth hormone replacement. She's holding her own bottle!
Alright so the second tooth coming in was not fun... at all. But with the help of motrin on the last day it made her a little happier. Also, on the 2nd she saw her endo and started growth hormone replacement. This is a shot that she gets every day. The needle is pretty small and the only time she cries is when she's in a bad mood which isn't often. I'm starting to think the top ones are coming in. She's slobbery and cranky and warm, but we'll see, it does take forever for those things to pop through.
Her holding her own bottle is so convenient! She's not a pro yet but she's pretty darn good :) She is slowly starting to eat baby food again. I think she just gets frustrated and wants something right away. So I give her bottle first and then I (pry) it out of her hands and start with the food before she screams that I took the bottle away. She's not eating a whole jar like she used to but she's doing something and that's all I'm going to ask of her right now. I didn't think her eating was as big of a deal as it could be. There's a facebook page and yahoo group for parents of munchkins with SOD/ONH and it seems as though a lot of the kids have eating problems. It's terrifying to think that this could be a problem in the future, Dusty and I both don't want her to have a g-tube (http://kidshealth.org/parent/system/surgery/g_tube.html) but today is not the day to think of it and we only take one day at a time.
So, she's on growth hormone replacement, ADH replacement, and thyroid hormone replacement. She gets cortisol replacement as needed. These 4 cover the hormones that she should be producing at her age. Yes, it stinks that she's getting all of them replaced BUT it's better to replace them then not to. And it kind of feels like a relief not wondering if there's something we're missing. Her ADH replacement (medication is DDAVP) for her Diabetes Insipidus was being given every 36-24 hours. But guess what! For the last few weeks she's been getting it about every 72 hours! It could mean a number of things 1) I wasn't calculating her I's and O's correctly or 2) she's weaning herself off. There's always the chance she will stop taking hormone replacements, if she does she might need them some other time, but then again there's the chance she'll always need them.
We weren't expecting Ohio. It was a little deflating hearing that's where we were going, but it will be great because we'll be about 2-3 hours from my family! I saw 2 ped endo's when I did a quick search and I'm sure they have therapists that will work with her. I just hope that we can have better confidence in the healthcare if she ever has to go to the ER again. I'm terrified to bring her to one in Panama City, they're not bad, they just don't know any of her conditions. When I do get out of the military there are a ton of AF civilian paralegal jobs available. Dusty's squadron will help set up his career so that he can continue burning through the ranks and showing how awesome he is, and we're hoping that he won't deploy as much. So while it's not Colorado like we were hoping, it's going to be great!
I think this is long enough, again, thanks for reading and feel free to pass along this blog to whomever would be interested. It's hear for education, understanding, and love.
She is doing awesome! The teeth thing is never fun! Mathew just has his last 2 molars and he will be done! Yay! So with her not getting the meds for the diabetes mean that she is producing insulin or no? She is definitely strong and as long as she gets the hormones she will be okay. Even if she doesn't need them or take the when she gets older it is a good thing she has it now.
ReplyDeleteWe were thinking of Colorado ourselves but decided to stay at Grissom. We aren't that far from you either! Someday we will have to meet up so we can meet your husband and get to see that precious baby girl!
You ever need to talk, vent, or just chat I'm always on here so hit me up!