In true fashion I'm still playing catch-up. Awhile ago (about 1 1/2 months) James went to his first CTC clinic (Coordinated Treatment Center). It was very similar to the Special Needs Clinic we attended in WI but a little different. Because James sees the outpatient therapists at Sanford on a weekly basis our day was shortened because we didn't need to visit with the OT, PT or speech therapist. Another difference was that we saw a pediatrician in addition to the physiatrist and nutritionist. What did we learn.....not too much new but a few modifiactions were made. His baclofen dose was increased due to the fact that he's lost some range of motion recently. So far this difference seems to have helped. It mostly seems to depend on the time of day and who's working with James as to how tight his muscles really are.
The big ticket item for CTC clinic was our visit with the nutritionist. It seems that this is a never ending cycle for James. He's lost about 2 lbs since we've moved to ND. We don't think his calorie intake has decreased but that he's burning more calories because he's going to school 4 days a week plus his time in his stander at home and his outpatient therapy. The nutritionist thinks that we're maximizing all of his caloric intake options. So we're down to a goal/ultimatum type decision. We have 6 months (from early November) to get James to gain a minimum of 1.5-3 pounds. We're doing all we can....please pray that James can increase/maintain his weight! If we don't reach our goal we will more than likely have to make the painful decision for James to get a feeding tube :(.
All in all it was a pretty good visit.
