Tuesday, February 24, 2009

Update - Feb. 24

The past couple of weeks have flown by and I apologize for not updating the blog sooner regarding Paul's baclofen pump surgery. He is doing well although he still cannot do any rigorous physical rehab until tomorrow, which will be two weeks since his surgery and the incision should be completely healed. As we expected, he does seem a little weaker on his right side, however his right leg seems less stiff and his right arm is looser. That is all good. We had one follow-up appointment with the doctor, who increased the amount of baclofen Paul recieves daily and he will continue to tweak that amount to determine what Paul needs to get the best results.

Paul also is less tired as we've weaned him off the oral baclofen. Not only is he less tired but his speech seems to improving a little bit. When I say that, I don't mean he is talking and holding conversations but he seems to be able to say more words on his own without being prompted. This is still a very long and slow process and he continues to primarily use the letterboard and Dynavox but it is still progress, which is something we are thankful for every day.

His therapists report that he is very upbeat during therapy and has a great attitude. The other day, a group of patients was playing darts and Paul went to join them and said, "Bring it on!" We've practiced this phrase a lot but it is wonderful to know that he said it on his own.

Paul's brother, Jim, and his wife, Lori, were in town this weekend and we all had a great time. Jim, Paul, and Buzz played Frisbee for quite some time on Sunday and Paul did very well, despite having to catch and throw with his left hand AND while sitting in the wheelchair.

We expect that Paul's rehab will continue for many more months. That is okay though, because as long as there is improvement, I don't think anyone wants to stop now. Thank you again everyone for your continued support.


Wednesday, February 11, 2009

February 11, 2009

I am happy to post that Paul's surgery went well yesterday. The procedure was over about 7:00 p.m. last night and the doctor said it went very smoothly and that he is very optimistic about the possibilities. Prior to the surgery, he videotaped Paul sitting, standing, walking with assistance, and stretching his arm so that he could measure Paul's improvement over time. Prior to the surgery, Paul spelled out, "I'll be happy once they implant this S-O-B" and he did seem very happy afterward but in some pain. Beth stayed with Paul at the hospital last night and it still is to be determined whether he'll stay over tonight as well. I'll keep you posted.

Thank you, everyone, for keeping us in your thoughts yesterday. Paul read throught the blog messages at the hospital as we waited to be called in for the surgery and I know he appreciated all the support and encouragement. I did too!

Thanks again,

Thursday, February 5, 2009

February 5

The baclofen pump surgery is scheduled for next Tuesday, Feb. 10. Paul will stay in the hospital (UT Southwestern/Zale Lipshy) at least one night, maybe two but at this point we don't know. Once the pump is installed, I believe that the doctor will want to watch him as the first doses of baclofen are distributed via the pump and then fine-tune the amount and what time he receives the baclofen. We are excited but, as I said, a little scared. Paul has expressed sadness that he will have to have this device in his body but we've tried to assure him that, if it allows him to get stronger, gives him more control over his body, and, hopefully, walk with less assistance, than it will be worth it.

Paul's short-term memory continues to slowly improve. We've learned that we have different types of memory and each is located in different areas of the brain. A doctor at Pate explained it, in very simple terms, by using this as an example: You have a doctor's appointment in the morning. One part of your brain stores the information that you went to the doctor, another stores the information about what the doctor looked like, and yet another will store the information about what the doctor said. Basically, it comes down to taste, smell, vision, hearing, and physical feeling - all are stored in different areas of the brain. If one of these areas of the brain is not working properly for Paul then that leads to confusion when he tries to put the pieces together. He is currently being tested to see if it can be determined which areas are affected so that we can help him with those specific memories.

That said, Paul's longer-term memory continues to amaze me. We went to see one of the doctors for the first time at Pate here in Dallas. The moment we walked in, both Paul and I, and the doctor, knew that we all knew each other from somewhere but couldn't figure out where. We went through the usual scenarios of work, school, neighborhood, etc. but still couldn't figure it out. Then, near the end of the visit, Paul spelled out O-L-D D-A-Y... and before he could finish we realized it was from Buzz's daycare. Her son was in Buzz's class for a time but that was almost three years ago. So, the dynamics of the brain and all that Paul can and cannot do continues to fascinate and frustrate at the same time.

Please think of Paul, and say a prayer for him, next Tuesday around 3:30 pm as he goes in for his surgery. It is minor surgery but could bring about some major changes.

Thank you,