Wednesday, September 24, 2008

Mixed feelings

Evan has his therapy evaluation today. There was some residual crankiness from the day before but he managed a pretty good showing. One of the questions was if he choked on his food and I answered no unless he crammed his mouth full. During a break between the PT and the doctor that will be coordinating his care coming in to talk to us I gave the boys some peanut butter sandwiches that I had packed ahead. The second that the doctor came in Harry started gagging and choking on his last bite of sandwich. Just as I get Harry all fixed up Evan goes and does it too! You would have thought that he would have learned from the example of his brother, but no he did not.

We have prescriptions for therapy which we can fill here in town (thank goodness) but the doctor also wanted to put him in a hand splint and a DAFO. The hand splint was something that Evan's previous PT had talked about trying, but of course the move made us put it off. I was expecting it. The DAFO was another matter entirely, I am not really sure how I feel about it. I am trying to keep an open mind about it and see if it helps him with his walking any. He does tend to foot drag when he gets tired or is not paying attention to how he is walking. The doctor also mentioned Botox as a possible eventual treatment but I am very reluctant to have long needle jabbed into Evan for sometimes questionable and always temporary results.

It seems that more and more people are being added to Evan's list of people that he has to see. We started out with his primary care doctor who added the cardiologist, neurologist and the rehab doctor. The cardiologist added the electro physiologist to keep track of Evan's pacemaker. The rehab doctor added PT, OT and the person that will make sure that his splints fit properly. That is a lot of visits to keep track of, my mind is starting to spin. I miss the simplicity of his previous specalists. I am going to see how it goes and if things look like they are improving I will play along, but if the results are not there then I am going to cut back.

10 comments:

Ginger said...

does he go to all these specialist to eventually overcome his situation? what are you going to do when school comes around?

chichimama said...

I feel for you. I hope it all works out fabulously, and that you magically can keep track of it all!

purple said...

I, unfortunately, understand entirely. I was diagnosed with cancer a few years ago, and I went from barely ever going to the doctor to having a million (and that's not counting the doctors I saw for 4 months of chemo or daily radiation for 6 1/2 weeks). I just finished making appointments for my internist, dermatologist, oncologist, ophthalmologist, endocrinologist, gynecologist, plus I have to go to the lab for blood tests, different lab for mammo, and still have to make a cardiologist appointment. I also have a dentist appointment. I am so overwhelmed especially because I have a full-time job and of course none of these doctors have evening or weekend hours.

I really do feel for you

My Full Hands said...

Hang in there. :)

The Woman said...

I hope it all works out. My daughter used to cram her mouth full like that and then cry cause she gagged on it. ugh

Damselfly said...

Well, because you are Awesome Mom, you of course know what's best! :) All this extra care and your love will pay off!

Kathie said...

Hope all goes well for you and your family.
Blessings from Costa Rica

CC said...

Hugs! That sounds exhausting.

chelle said...

You are wise and you know what is best for your son ultimately. Good Luck!

Amber said...

I have a friend who just moved here with a special needs child and it is mind-boggling the number of appointments she has for him. She, too has the same attitude--if he is not progressing, she will cut back. What a great mom you are!