Yesterday was the much awaited Children's Hospital Appointment. It did not live up to my expectations. Everyone wanted us to go there and it is hard to get into. Based on the materials we received in the mail and the build-up to it, I thought we would see a lot of different doctors and get life changing information.
We saw two doctors, one for about one minute, and they said he looks great! They gave us a packet of information with a list of therapists and more information about Downs. It includes a list of when different exams need to be done to make sure the doctors don't miss anything.
Since Russell has other health issues (the heart and little weight gain that is probably related to the heart), they don't expect therapists to visit us for a few months.
They gave us a referral to an eye doctor because people with Downs often have eye problems and got a complete blood count blood draw done. It is 100% normal according to the doctor who was nice enough to call.
We did learn that he needs a neck x-ray if he plays any contact sports or participates in the Special Olympics (although we're going for the real Olympics) and NO trampolines.
One doctor answer lot of questions and talked to us for over an hour. The appointment just wasn't what I was expecting.
We are supposed to go back in three months.
I'm sorry the doctor's visit didn't go as expected. I know it is disappointing when you expect them to be a lot more enlightened and enlightening than they are.
ReplyDeleteDo you have a good resource for reading about Downs on your own? What to expect? When to be concerned, etc?
I guess it is like other medical challenges ... you have to learn as much as you can to advocate for Russell yourself.
Handling that oxygen sounds like a real challenge. When Rex was on oxygen for a while, he had a concentrator with a really long tube that would extend all over the downstairs. That way, we only had to take a tank when we went out somewhere.
Keep posting the pics! He sure is cute.