Day 3

I just offered to update the blog tonight from Justin's own words but he's eating Watermelon Twizzlers and watching NCIS so he politely said Nah!!!

Well, Justin finally made it to bed around 1am this morning---nothing wrong, he just found himself intrigued with the stories on the history channel and kept on going until he finally realized that mama can't go to sleep until he does. Shower done and bowel program and it was off to bed.

4a.m. rolled around quick for his turning (and no accidental leaking with his bed bag, yippee) then it was alarm time to get up for a new day. Things went smoother this morning and we even had 20 minutes to spare before his 9am start time.

Met with the nurse for the outpatient program which was basic Q&A with some suggestions; she's scheduling Justin to meet with Dr. Lin (new doc who watches over the day program patients). It was PT time with Marta (I think she's Russian--don't always understand her) but we "proned" Justin--which is basically laying him on the mat on his stomach--she showed him some exercises to do laying that way and basically said "see you later", got mine and Justin's attention so we were all "see you later??", she asked if I could roll him back over and get him back in the chair, which I can, so she left us to do his arm exercises and get him on his way to the next person.

He had Wonderful Wayne next--psychiatrist--who actually thinks we're okay people, even with our quirks and Justin's sarcastic sense of humor, go figure--we may actually be normal (LOL).

It was TR time next which was full of the game RummiKub---fun game but was designed to work fine motor skills--the three players there all have difficulties using their hands so it was interesting to see them all trying so hard while still enjoying the game. There was some frustration with Justin not being able to grasp (they are like dominoes) but he relaxed with it and seemed to come around (his friend Sam was in there and they are a hoot when together).

OT worked with him next and tried some new things for him to try. She was wanting to try to show him how to empty his own leg bag and he said while they were in the "potty" leaning trying to reach it he felt a 'horrible' pain in his bladder area, he said it hurt bad enough to freak him out and insisted she set him up straight. Apparently it scared because he said he had to apologize to her for freaking out but he had never felt that pain before and wasn't aware he could feel that kind of pain in that area. He goes back in the morning to discuss his meds with the nurse so we're going to ask her opinion.

He seemd to get better so OT worked with him on some new things that work his arms, upper trunk area---he said she's brutal and tried to kill him (ha ha) but he's sticking with it all and working hard. She loosened his binder and he's been doing well with his blood pressure so far. I checked it at 9:30 and it was 118/63 with P 92--that's pretty good to make it 6 hours without the binder---this is a big thing, means he is working towards a stronger diaphragm and lung function and everyone's dream to be able to function without something helping them to breathe.

Nothing new to report as for progress or improvements. The last two days have basically been re-evaluating what we already new fromt he inpatient side of things.

Hope tomorrow brings more of a routine and strengthening and such----also brings that boy of his officially turning 4 years old, where did the time go??!!!!

Love you all, appreciate you all and continue to pray---thanking God for all of you!!!!