Monday, November 3, 2008

Down Syndrome Clinic

We headed down to TCH one more time for our appointment with the Down Syndrome Clinic. It was nice with the time change not to be driving the entire trip in the dark! We met with several doctors, physical therapists, occupational therapists, a social worker, a speech therapist, and...I think that's all. Oh, wait, and a nutritionist. It was quite comprehensive, but nothing totally brand new to us. They estimated him to be at about the level of a six-month-old baby, which given his adjustment for surgery, is right on target. Now, we have to keep him progressing so the gap doesn't widen. They recommended that we increase his therapy, which we knew they would. Right now he only receives twice a month therapy (OT) and they recommend twice weekly OT, PT, and Speech therapy. Now, we just have to determine where the line is: Where is the point where Justin gets enough help that he progresses and we are able to continue working at home, without our family going broke in co-pays (that's $150/week if we do it all) and it taking a toll on Travis and the rest of our lives? We're not sure yet. Since our insurance changes in January, we have a little time to scout out some other therapy options and then start the new year with the changes.

We were optimistic about the appointment and it was positive for us. Justin is progressing and while there are things we could be working on, we're moving in the right direction. There's always so much information to process, and they gave us ANOTHER packet of information to read so we have more to try to fit in our heads somehow. Is it possible to hire someone to read and then teach it all to me? I have a stack that is about 6 books high right now, and they are all as interesting as textbooks. I love to read and I want to read, but the extra hour we got this weekend did not cut it!

1 comment:

Unknown said...

You frustration is totally understandable. I wonder if there is a group that helps out with such expenses so as not to hit so hard on families. We continue to pray for all of you and are so proud that Justin was right on the 6 mos target!