Her endocrine doctor wanted us to wean back a little on her daily dosing because it's technically at an adult dose but it's apparently what her little body needs right now. One minuscule little decrease and the big circles around her eyes are back, the vomiting is back and she's sleeping horribly. We'll up dose again for a while and try again. I feel like the little engine that could sometimes, constantly chanting to myself "I think I can, I think I can". It really sucks sometimes knowing that how she feels and is able to function is all dependent on me being able to read her needs since she is unable to tell me. I know I have big shoulders but it's really heavy sometimes.... especially at 6 am when she's kicking my ass and being an aggressive little monster and I don't know how to help her. This morning it consisted of her getting baby gated into the play room. She clocked me in the face and I just needed to separate myself. She was able to sit in there and throw her toys everywhere and yell (I'm pretty sure our neighbors think we are lunatics) for over an hour until her steroids peaked and she finally calmed down. *Note the completely trashed room below
We tried going back to school because Madilyn loves to be outside the house but it didn't work. She gets so overwhelmed just pulling up there. The school was willing to work with us this fall but with this attempt to go back they were "willing to work with us" but not really. Not in any way that is appropriate for Madilyn or her disease. She scares them and they could no longer hide that. I get it, she used to scare me too (hahaha)... she's not obligated to be in school until fall so we'll see then if it's in school or home based, either way I refuse to ever force another person (teacher or otherwise) to be responsible for my child when they are uncomfortable with her. Her life depends on their ability to care for her. In the meantime we are impatiently waiting for the call from the rehab facility to start outpatient therapies. Physical, occupational, vision and speech... I think the regular weekly outings will be good for us. They're working on aqua therapy too but we may have to travel to Milwaukee weekly for that one. I think it would be worth it though so we'll see what they decide.
We are definitely enjoying that since our move we are able to get out in the stroller at this time of year for walks. It's so peaceful to go down by the lake and being outside anywhere is Madilyn's favorite thing to do. Here's some pictures from yesterday's stroll:
Time for me to stop hiding since the lovable little miss has decided to finally surface. It's time to build some puzzles and maybe shop for some new little pink shoes....
