Wednesday July 8th, 2009: Goal conference

Today was Will's team goal conference. We sat down with most of his team and went over his goals for day program. The first day of day program was similar, but now that they have had a few days to get to know him, these are the structured things he will work on. Tomorrow morning the team will meet without Will and they will determine his discharge date. We had thought we would have found out today, but it's actually tomorrow. His goals include working on trunk & core strength, balance, stretching, and fine tuning the more difficult types of transfers. He will get to go on the airport outing next week, which he missed when he was sick with his UTI. He also wants to get in the pool before he is discharged, but right now he can't due to the fact that he has a big ol' nasty scab on his elbow from the ATV accident. Once the scab heals and falls off then he can get in the pool. Yesterday morning, his OT came over to the apartment to observe and go over his morning routine of getting up and out of bed and dressed. She also watched Will practice padding himself off in bed, as this is a bit difficult for him, but extremely important so he does not get a pressure sore. She helped him use his bendable mirror to check his skin too. Every night I get to look at his pasty white butt. Just what I need to be dreaming of- NOT!

Day program has already proved to be very exhausting for the both of us. Will wakes up at about 3 am every morning to cath himself, therefore I wake up too. My bed is about 3 feet away. It's great that he has the bladder sensation, but it is still a challenge since he cannot pee on his own. We go back to bed by 3:30 am and then we are back up at about 7 am. We get to bed at about 11 pm. His night routine takes about 2 hours- from the time he does his bowel program, showers, caths, and then gets undressed and positioned in bed. It is amazing all the little things we take for granted everyday that are so time consuming and challenging for Will. He and I have had many moments of disagreements and tension. It's certainly not easy living with a disabled sibling. There is a lot of tough love going on. I know he misses his social network and he has commented on the fact that he feels a bit isolated living here in the apartments. I myself am pretty homesick and growing very bored of the daily grind down here. But I can't imagine what it would be like to not have this transitional time.