Paul's Update - 08/25/06

Dear Friends:

As I said before ... not much happens from day to day. Paul continues to be defiant from time to time. He doesn't want to get out of bed much. This makes it difficult for Dad & Tabby to keep him exercised. He seems pretty alert and when we talk to him he seems to understand most everything we say. Dad got Paul up and outside on Thursday for a bit. It was pretty hot and he didn't want to stay out long but at least he was out of bed. The same was true for Friday. It was pretty hot (90 degrees or so) and so they only stayed out for about an hour. Paul also has the recliner in his room and sometimes he enjoys sitting in that to watch TV. Max is so enjoyable most of the time. He smiles all the time now and he has discovered his mobile that hangs over his portable crib. It keeps him entertained sometimes for 15-20 minutes. It is always fun to watch Paul hold Max. Every once in a while he will reach down and give Max a kiss on his head. Max seems to like being with his daddy! They are really good for each other! Dad & Tabby finished the laminate flooring and WOW ... what a difference it makes. First it brightens up the basement area ... but it also makes it so much easier to get the wheelchair around. It is especially great for going through the doorways! This week has been an emotional rollercoaster for all of us. It appears that we are all feeling the strain from doing this for so many months now. It is especially difficult since we don't know how long we will continue to do this ... if not for the rest of Paul's life. It is also difficult when he is defiant since everyone is trying so hard to do what is best for Paul. I know God continues to hold him in His hands. I still believe that a miracle can happen in Paul's life. I only wish we could know what God's plan really is. Thursday night Dad & Tabby decreased Paul's medicines once more. I believe that makes him down to 750mg per day on the Depacote & an average of 500mg per day of Dilantin. I pray that he will continue to be seizure free as we continue to decrease this medicine!!

Have a great weekend! Lynne & Carl