Is this the same little boy? Poor thing - side effects to ACTH - Moon Face!
I think he's got a Moon Face!
He was very energetic this morning and wouldn't stay still so I could take a picture. It may be blurry but he's got a smile on his face.
We have 10 more ACTH shots! Personally I won't miss giving his shots everyday, I'm ready to be mom and not a nurse. With stopping the shots a lot of additional worries will start. #1. Can we keep him germ free for 3 months? Immunity surpressed is not fun. #2. Will the seizures return? In what form will the seizures return? We've been told we will be on med's for the rest of his life. #3. Will we ever get back on a schedule? Will we sleep more than 2 hrs at a time? #4. will progression return? Can we regain motor skills? #5. Can we just set back and wait?
It's time for the Moon Face baby, to have another ba-ba so I better get to mixing it~
Oh Mel. His poor little face has swollen more since your last post. It is good to see a smile on his face. Can we see a smile on yours? Germ free during the winter? Good luck with that. How are you going to keep everything clean and take care of a non-sleeping baby on no sleep? If anyone can do it, you can. I am certain! Keep us posted.
ReplyDeleteThinking of you friend. And praying for all of you!
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