September 2

Today was a pretty busy day for Jeremy. About 6 am they started testing Jeremy's range of motion. They measured each angle of this hips, knees, wrists, ankles and all the other moving extremities. At about 8 the doctor came in and did the baclofen injection. They started out small at 50 microliters of baclofen. Then at 10, 11 and 12 a specially trained physical therapist came in and tested Jeremy's range of motion to see if any of the stiffness of his muscles had eased up. Each time, she measured and assigned a number between 1 & 4 (very flexible to very stiff). She videotaped it to show the doctor. At about 2:30, the doctor came in to do the same assessment again. Then at 3, he called Jeremy's regular physical therapist to come and see what she thought about Jeremy's increase in range of motion, since she has a previous history with Jeremy and they didn't.

In the testing, they like to see a 1% increase in range of motion. After all the numbers were calculated, Jeremy was at 0.5%. They asked Jeremy's regular therapist to get her opinion. The question was, do they do another test at 100 microliters or just put the pump in?

The doctor (surgeon) that would put the pump in is on vacation and would not be able to do it for about a week.

At the end of the day, we THINK they are going to just put the pump in late next week but we are not sure. Everyone is very anxious to break Jeremy out of this bondage he is in, and they think that this baclofen pump is the answer. But again we have to be patient and wait!

Speech therapy today thought that Jeremy may be ready to eat real food. She order him lasagna. During lunch, she decided to hold off on that for a few more days. Maybe today was not the day to try. He was pretty tired with all the stretching and stuff from the therapist. She is really proud & excited at how well Jeremy is doing in the food department. She thinks by early next week he will be eating regular food. No more tube feeding or pureed food. He is almost there!!!!!

Thank you for your continued support and prayers.