Day 51: Confidence

John slept better last night than he has since surgery, even with that he was up at 4am with tummy pain, but then was able to sleep in until 8am and woke up asking for a bath.

He's still too tender and sore to sit in the high chair in the cafeteria, so this morning he sat on my lap for breakfast and then rode for a while in his stroller. A brief rest and he was ready for a walk. He did great, he walked farther today than ever yet since surgery. Really I think that rebuilding his confidence is as needed as rebuilding some muscles. Not only is he dealing with a new center of gravity because of the surgery, and the attendant pain, but because of the pain we had to take the lateral supports off of his gait trainer so he's having to deal with essentially a new gait trainer too. Even with all that today he made it out of the room, to the elevator, through his favorite doors to open (the handicap button is low enough he can open them himself) through the underground garage and back to the elevators before he was pooped out and needed me to pull him. Each try out is better and longer and yet I can see that he's still frustrated with the lack of ability to go and do. He certainly has no chance of catching patience from his mother!

For now we are getting settled in. I finally found the ethernet cord so that Mark doesn't have to blog for me, and got enough furniture moved around here that it pretty much gives John his own room. He was on the bed when I moved it and he thought that was pretty cool. It feels really good to be taking care of his meds and stuff again. His new med schedule is pretty intense, he has either oral or IV meds at 8am, 11am, 3pm, 4pm, 8pm, 9pm, 11pm and midnight and still needs to have his TPN, replacement fluids and formula too. With all that and a lab and clinic appointment each week I think we're going to skip therapies altogether until the med schedule slows back down to it's normal 3x a day routine on the 1st of November. That way we can spend as much time rebuilding confidence and just enjoying being a little boy as we can get.