Update from Kathy:
So, I'm wondering... is it midnight yet?!?!?
It has been a long day of figuring things out for us. Skyler had a pretty good night last night. He was awake early wondering where his 20" flat screen TV with CNN Headline News was???
Skyler got up wanting to do all of his usual Sunday activities and was very frustrated because he just didn't feel well enough to do them and the control on his arm was still weak. He is a little disappointed with Chris and I and how long it takes us to transfer him and get him set up. Mr. Patience! NOT!!! We are getting better at it. I think we will rent a reclining wheelchair so Skyler can lay back and relax without going to his room. He wanted us to roll the hospital bed out to the family room every day for him... Uh, No. He has been in his chair a lot today, and, Drum Roll Please...
He is using his left hand to run the DVD/VCR with his DynaVox!! Ahh... Big Sigh of Relief. We had to raise his talker up because he is taller now and he isn't able to bend his head down as much as he used to. He is a determined little, Big guy.
We were able to get an order of Valium for his leg spasms. A few calls to the Silly (Damn) Resident finally worked. Skyler is having a little trouble with his g-tube and we are waiting to hear from the g-tube nurse about that. We may have to make a trip to Children's to get if fixed. We asked for her to come see Skyler while he was there, but she never made it. What's up with that?!?!?
We were hoping for a nap today, but so far no such luck. Skyler hasn't even dozed off, even on his pain meds. He spent most of his day in the hospital sleeping.
That is the news from The Hull Household. Thanks to everyone for your support.
Don't worry, I won't send out a daily update, only if something really exciting happens! :-)