12/13/2009

I apologize for not updating yesterday. We just seemed to be busy with a lot of things. OT worked him really hard and he has been doing his speech therapy exercises. It is comical to listen to. Ahh Ehh echoes routinely in this little room along with a lot of swallowing exercises.

Right now he is just slowly gaining strength. His voice sounds more like himself at times, but once he fatigues then we are back to the gruff low tone. Still no facial expressions to speak of. He tries ice chips and popsicles but still gags and coughs a lot with these. Aspiration is a huge fear and we work hard to avoid this. The feeding tube has helped his strength but he is still hungry. We are not allowed to discuss food, let alone bring something to the room to eat. We just say we are going to get the mail and disappear for a few minutes to grab a bite. He never asks why we do not have any mail when we return :O) Many of his Ashram housemates and Anderson friends have visited. Last night I stole away for a few hours with some dear friends. When I returned I excitedly told him about the fabulous meal they had treated me to, forgetting the rule of no food talk. His face just fell and I felt bad. Starving is no fun.

The weekends in a hospital setting slow down to almost a halt when it comes to decision making and diagnostics. Tomorrow will hold a day of decisions and hopefully we move to a regular medical floor and once speech says he is strong enough to remove the NG tube we will be heading back to MHHCC for rehab. We are even going to try to see if they will take him back even if he still has the NG tube. IU has been wonderful to us but it is so difficult for me and Craig to be away from home. We have been through so much lately without our community and friends. Never have we realized how much these people mean to us. Our time in Florida was such a sad time but doing it alone made it harder. We were so happy to be back home and then all of a sudden we were out of our community again. We just want to be close to our home, friends, and work. For 25 years I have begged Craig to let me be a housewife/mother. Now all I want is to go to work and feel normal again, to have a routine and complain because our children are too busy to spend time with us. The real truth might also be: I MISS MY DOGS.

Brock is staying brave and trying to not be discouraged. He is a very intelligent young man and understands this syndrome and its process better than most. He has amazingly stayed positive even though within a weeks time he lost the ability to walk or the ability to do daily activities of care. He has to depend on someone for everything. I know that this is a hard thing to take but he has done it without once complaining. He has the most amazing friends that have came by to offer encouragement and much love. They too are amazing young men and women. I have felt blessed by all of them.

If there is any news yet today I will post but I do not expect any. As soon as anything develops tomorrow we will keep things posted. I expect some kind of news and timeline for the week will be developed.

love,
denah