Sawyer is better and turned out he only had a sour tummy and no flu.
Cully is still having seizures while on the ACTH for almost two weeks. This morning he had the worst seizure yet and it caused him to fall down. This is about the worst thing we could see right now.
Outside of the seizures he seems ok. The tempers and the whiny attitudes are as expected so not worried about that. He loves to dance and interact with everyone. He is smart and still is learning a lot of things.
Something I am noticing a lot of however is he is mumbling almost everything. Not quietly but rather just all mushed together where we can not make out a lot of what he is saying. Maybe this is part of the drug or could this be his regression? He is not hesitating to talk though. Every time we hand him something or he asks for something it comes with a "Please" or "Thank you" and he is ALWAYS wanting something. But our first regression at the start of all this was his speech so there is a sign that this is not the drug unfortunately. Fingers are crossed...
Our days are still filled with snuggles where Cully will get next to us and hug us or just lay on us. He has his sense of humor which is very prominent every day with tickling us, laughing and hiding around corners to scare us with a "BOO".
The patients project is all but out the window. Cully gets very frustrated with the Ipad now and has no tolerance for much of anything that does not work just right. This he gets from his Daddy though *sigh*.. Guilty as charged....
Tuesday we return to the hospital for the EEG and we also meet with the doctor to see what to do next..
I am SO sorry. I hate that it's looking like ACTH isn't doing the trick.
ReplyDeleteI'm already praying over Tuesday. For clarity...and peace.
Great big hugs from Trevy's VERY exhausted mommy!
...danielle