Thank you all for your generosity today. We will never be able to full express how grateful we are.
Today was a mixed bag. He had some very stressful lows, and some heartwarming highs.
Our highs today:
We got to see big sister today! She was given the okay to come see him and it did them both some good!
He had a wonderful hour and a half of normalcy where he had an appetite and wanted to interact and sing with the movie Frozen (his first time watching it, he only likes the part where she sings "do you want to build a snowman?") He loves snowmen and Santa :) They've also changed him from a crib to a regular bed so we have the ability to lay with him and snuggle!
The steroids they have him on to help with the swelling in his head make him irritable and generally very discontent.
We had a worrisome episode in which he appeared to be in pain, but was unable to communicate what was wrong and wasn't focusing on anyone in the room.
He is having trouble sleeping this evening and is very fidgety and restless and of course fussy.
We take each day as it comes and I constantly re read your words of encouragement and support.
Thank you all!