SWEET MAGGIE MAY:
Our Life with Muscular Dystrophy and Growth Hormone Deficiency
Monday, July 22, 2013
It was MAGIC
I really can't believe that we went to the MAGIC Convention in Chicago, and are home safe and sound. My beautiful little Mimi had an amazing consultation with Dr. Harbison, who announced to us immediately that Mimi is a Growth Hormone Deficient Baby! She wants Mimi to have her stim test right away. She also wants her to have an MRI to check her pituitary as well as cortisol and adrenal studies. (scary)
Mimi was so beautiful here as a little butterfly. I, on the other hand, was about to faint...this was half an hour after our consultation.
I wandered around the convention hall seeing friends and faces I'd met on Facebook. Little children from photos coming to life, running in front of me, hugging their friends...eating watermelon, being silly.
Mimi waited for Heloise in the hallway. She wanted to meet her online friend from Canada so badly. It was so sweet to see them first see each other. They brought with them 33 pairs of French shoes from Heloise to share with other tiny girls. (size 16-20). how cool...
Suddenly we knew what we were dealing with, with Mimi. and in minutes, I have all the growth hormone reps in full view. I was able to ask questions and gather literature to bring home. I have a sack of GH medication pamphlets. Well they aren't pamphlets. they are like super glossy info packs. of course. but rather timely!
I spent Friday in lectures learning about Growth Hormone deficiency, and Laron syndrome, cortisol dangers, puberty, and all sorts of other things. Mimi, Max, and Dad went to the Brookfield Zoo with a tour. We met up at 5pm in the room, and the kids got ready for the costume dinner. They were so excited.
Here's some photos of the night. Mimi thought it was her birthday party. Max wanted the dancing to start right away. He got on the dance floor way too early.
Mimi and "my new best friend!"
Superman, and little ones.
and with a big one. LOL
My first on the floor dancers (well, running around-ers)
We drove a total of 1500 miles. At one point we were half an hour from IOWA! I saw so many things I've never seen before. And finally, someone had an answer for me. After three long years.
We drove home feeling empowered. Knowing what we need to do.