Happy 23rd birthday, Brian!

Today is Brians birthday. I have a few minutes to update, finally. He and Rachel are watching Napoleon Dynamite as I sit here. He has been enjoying videos since he got home. He loved The Pursuit of Happyness and even seems to remember that he watched it. This is his biggest challenge right now. Very bad short term memory. He will ask the same questions again and again. Usually if he is prompted to remember it himself, he will come up with the answer. By the end of the day when he is tired, he gets very repetitive. I think that his battery gets worn out and he just needs a new charge. He wakes up very pleasantly. Usually he asks about what is going on and we go through the whole AVM bleed, Harper Hospital, Clarkston Specialty, RIM and home routine. Then, after that, he starts to remember again. He knows all the therapist names and doctor names from RIM. His sense of humor is fabulous and he even pokes fun at himself.
We have all survived an entire week at home. It is time consuming but not as bad as I thought it would be. He needs 24 hour supervision. This obviously includes sleeping, too. He sleeps on a twin bed in the den and I sleep on the lazy boy next to him. This way, he cannot accidentally think that he is able to get up by himself and go to the bathroom or anything else. He relies on a wheelchair and transfers are very easy to do. He cannot walk without a lot of help and only walks down the 3 stairs of the garage and over to the car. This works well, thank goodness. He eats like a horse and bathroom duties have been going great. One of the biggest deals is taking a shower. He feels cold so quickly so I try to keep it warm and have lots of towels handy. The transfer from chair to shower bench works well but I have to switch belts from dry one to wet one and I know he gets chilled. I try to make sure that he is plenty warm before getting dressed. Even with all of these preset measures, he seems to get a headache after showers. I hate that part. Hopefully we can figure out a way to lessen the headache.
Brian saw a primary care physician in Detroit to get his medicines refilled. He also has to have a blood test once a week for cuomidin levels. He should be off of the blood thinners in about 2 months.
Yesterday was his first day of outpatient therapy. First, we met Bhawa (Bava), his OT. She administered tests to assess where he is at and how to help him improve. She is upper body therapy. His left arm is at about 130 degrees which is much better than a month ago. His shoulder is still very tight and he can only lift his arm to shoulder level. He was asked to put little pegs into little holes and then remove them as fast as possible. He did great with the right but could not even pick them up with the left. Too small, he said. Plus, his vision in impaired...(he goes to Kresge Eye Institute on Tuesday). He also had his grip strength tested and finger strength tested. These are obviously going to be the base lines for Bhawa to judge his improvement.
Next, he saw Tracy, speech. She did some neat vocal tests with him to determine if there are any muscle weaknesses. He did great. When she got to ca,ca,ca,ca,ca it was obvious that there was a little slur there. What she gathered from all of this is weakness from the middle to the back of the tongue. Apparantly she can strengthen these muscles. She also noticed a little droop on the left side of the mouth. And I thought that this was his rakish pirate grin! She told us that this might improve or might not. It's a nerve thing.
Finally, we met Robbin, PT. She tested his leg strength in various ways. He did very well on this and she was very impressed. Right leg is of course very strong and mostly scored 5 of 5. Left leg was not too far behind. Lots of 4's, 3+'s, 4-'s. His hips were the weakest part and need the most work for walking. He walked with her and a "cane" and is so not coordinated at it. She attributes it to time in bed, hip weakness, brain confusion on working cane, left leg, right leg and the visual problems. So, there is much to do but she, and he, are raring to go.
He was tired when we got home and so was I. He conked out at about 8 and I had a devil of a time waking him for his 9 pm pills. Took about 10 minutes to get him awake enough to swallow them.
Rachel has spent a lot of time with us and as always, she is the best medicine. Looks like she has been able to arrange her work schedule into longer days and more days off so she can be here more often. Superb!
Got to go get my boy a gift...talk later! Love, Marcy :)