We found out on Wed. that Avery qualifies for Make-A-Wish. Really? I mean we are excited. She gets a wish! On the other hand, I have a kids that is sick enough to get a wish. It kind of takes your breath away. I’m grateful that they have this program. But I never thought we would be a part of it.
At first she wanted to meet Salina Gomez. But now she is thinking about Disneyworld. When she decides, we will let you know.
We also met with Endocrine this week. I was concerned about her growth. Her sister (that is 22 months younger, but expected to be taller) has almost caught up with her. The doctor confirmed what I thought. She probably needs some growth hormones. However, we can’t do anything until she is done with chemo. In a year. So, something else to look forward to at the end of the year. (It just means we are no where near being done with doctors, even in a year).
Avery also is still suppose to get Hydrocortisone if she is sick, however the steroid she is on, dexamethazone is in the same family. So it would be overkill to give her hydrocortisone at this point. It also makes it impossible to test at this point.
She is also having to pee a lot. It could be the water and steroids. It also could mean that she could be diabetic. They are watching her close. She does have a cousin (my brother’s daughter, Sadie) who has type 1 diabetes.
She has gained significant weight. Like 6 pounds in two weeks. This is all to the extremely high dose of steroids. Most or all of that is water. Her cheeks look like they did when she was a baby. But the doctor assured me that once we are able to take her off, it will all disappear. It does make her hungry, very hungry. Especially for salty foods which adds to the water retention. So we are trying to cut those out completely. And as of Monday she is back to a normal diet. She is VERY excited.
I know it all gets a bit overwhelming, it is a lot to take in. My mom went home today (cry, sniffle). It’s been great having both her and my mother-in-law over the last three weeks. It’s just nice to have that extra body for reading stories to the other girls, dishes (my kitchen hasn’t been this clean in months), retail therapy and just for the emotional support.