Forgive the brevity of this post. Also forgive the lack of pictures. I am blogging from my phone while Patrick sleeps on my shoulder. We had an early morning and a late and interrupted nap. He was ready to crash early.
Not much new today. They doubled feeds and cut TPN again. They also cleared him for solid foods so we celebrated with Pringles, pretzels and a ham sandwich. (They are always so surprised to learn he likes to eat. If only he swallowed.)
They also decided to cancel tomorrow’s biopsy because he is doing so well they figure it wasn’t worth the infection risk of a trip to radiology.
Today, I had a phone IEP meeting with Patrick’s school in Utah. His IEP has lapsed and we wanted one in place for this year. I am really happy with the goals and pleased with the fact that they took seriously writing an IEP as though he were staying. I wish I could see it executed just this way. Alas, instead I submitted Omaha enrollment forms today and get to have another IEP meeting in a week. I hope some portion of what was written today can carry over.
Otherwise today was pretty quiet. Patrick is moving a little better. But he kind of was feeling of off today and chose to play alone a lot. He sat to next to me on the couch for stories this afternoon, though, and that was a treat. Hasn’t felt up to that in a while.
Anyway.. Forgive my mistakes and brevity. Blogging by Swype is kind of hard.
Patrick Hoopes 