Mar 2005 | May 2005 | Jun 2005
He continue to get 3 IV treatments per week. His tutor comes everyday and has really helped to challenge his and make him feel part of the school system. He goes to school on days he feels okay for an hour or so. This has been good for his morale and seeing his friends is very important. The classmates were relieved to see him too as he hasn't been to school all semester. Germantown Elementary is such a wonderful school district and the principal and his teacher work with us however they can. We're so lucky we moved to this area.
Charlie is walking up stairs more. He is slow moving -- but moving.....
April 20, 2005
Back to Children's Memorial today for IVIG again. This seems to boost his immune system and he has been pretty healthy, other than occasional cold or cough. He tolerated all three IV treatments very well today. His stomach hurts sometimes still and he gets headaches at times, but he usually recovers pretty quick with Tylenol and within 12-24 hours. PT/OT did another evaluation and were very happy with his continued improvement with range of motion and strentching. He wears his braces for his feet/legs every night. Today he sat on a step stool and could get up from it for the first time. He still cannot pick his head up from a lying position, which is Dr. Pachman's goal before therapy can start. He will not be able to go back to school the rest of the year, but he can go still for an hour and will get the home tutor. He will continue IV solu-medrol, methotrexate every Friday and then IVIG monthly (if necessary).
Another wonderful thing to add is that my old farm neighbors in Abingdon bought Charlie a jogger stroller for his size so that we can go to the zoo. One of these days we're going to Lincoln Park Zoo during our visit to Children's. Thank you Carol and Mark Ray!!! What a wonderful gift. These are the days when we feel so lucky.
April 27, 2005
Charlie plays outside occasionally now. He can balance a little better in the yard and his walking is improving. He is still slow and cautious of falling. We're making progress.