Sunday, January 20, 2008

Day Three

On our final day of the Children's Hospital WS clinic, we left home at 6:30 a.m. to get to the hospital for our 8 a.m. Physical Therapy appointment. For almost two hours, Brady played with toys, moved around, did pretty much all that was required of him while the PT gave me suggestions and noted his abilities and difficulties. She felt he did not need any DAFOs or AFOs or anything else ending in AFO for his feet/ankles yet. She thinks we should wait until he is cruising along the furniture to see how he does and if his feet turn in at all. I am inclined to agree, mostly because it is one less thing to worry about when he really isn't going to be walking next week, I'm sure.

The PT noted that his services he is receiving now through Early Intervention are excellent. She said after his eye surgery we may need to do some neck therapy, because he tilts his head to focus on things right now. Hopefully he won't be doing this after his eye surgery, but he may need some help there since he has been doing that for so long. She also agreed with the whole midline positioning that OT stated the day before, and to help him transition in and out of positions. He was pretty interested in her toys, so I am on a shopping hunt.

After PT we went to Neuropsychology Testing, which was pretty much all the same tests as Mervis... once again Brady mastered these feats although he was exhausted by the time we got to her. Remembering another WS mom's plight, as soon as I walked in to the psych office, I said, "Brady has been awake since 6:30 (it was 10:15) and we just did two hours of PT." I wanted to qualify any problems we might have. Well, that was a needless thing to say because he did great, even though he was tired he came alive and grabbed at the items like a pro. This doctor didn't give me too much info as we were sitting there, but there really isn't much to "help" me with anyway. I will be interested to see what her report says.

This ended our clinic. The seven doctors/therapists met on Friday afternoon to discuss Brady and his testing. I should get a comprehensive report from the geneticist within one-to-two weeks, plus a report from each separately. They all gave me their cards and said if I didn't get their reports within the next two weeks to call. This is perfect because Brady has his Early Intervention annual meeting February 23 and we will be able to include their findings within our report as well.

The experience was fabulous; the therapists and doctors were all extremely helpful and knowledgeable. I felt I could stay for hours asking every nook and cranny question if need be. Plus I got ANSWERS which was cool. I would go so far as to say I had a more fulfilling time at this clinic than with Mervis this past trip. To be fair, it could just be because Brady was more receptive, and Mervis' information was really only one part of what we accomplished at Children's -- we also did PT, feeding, etc. at the hospital. The thing is, they are all linked. Brady's PT is really important for him and hinges on his other neuropsych stuff. Thinking back, those two hours of PT probably helped his Neuropsych testing because it awakened his body and let him know "where he was in space" (I think I am going to be saying that a lot now!). I don't think he could have accomplished some of his goals without reawakening his body. It brings us back to his brushing we did when he was younger.

I will still go to Mervis next year, but I don't feel like if I don't go I will be lost without it now, knowing I have phone numbers and names of people who can help me here who are knowledgeable with WS.

This clinic was done at Children's Hospital in Boston. I believe many other hospitals around the country do WS clinics. I would definitely find out if one near you offers it. This information would be priceless for EI and IEPs, plus they seem to lean towards the "more is better" theory of therapy, so that would help with gaining services.


Ava Jewel Leilana said...

I am so glad Brady did well. I go to WS clinic at Phila's Children's Hospital and I have only seen the genetics doctor and we have been there 3 times. I will have to contact them and find out why we haven't had such an detailed visit.
Happy New Year!

Laura said...

It's a long three days and a lot to take in. I'm glad you had a good experience and Brady was in top form!

Every minute counts.... said...

I would be interested in going! Only problem I'm half way across the country!!!!

The closest clinic for us I think is in Ohio...maybe I will check it out and see!


Michelle, Tim, Aidan & Ari said...

rwrcebnI am so happy you had such a great visit. I remember when Ari saw the Neuro Psych the last visit she was lying on the floor saying "night night". It is a long 3 days. We will be there this spring...I hope it goes as well for us as it did for you.

Amy said...

Wow super great update...let me know what toys Brady likes I wonder if I have any I can mail you that my pumpkin has lost interest in?!?!?!

Nicole said...

It sounds like you now have so much great information. Don't you just love information, I always feel like I can never get enough...

Thanks for the tidbit on biting. Yesterday, Emerson took a nibble on Ella's forhead out of frustration. Not good. Now I know what to do!!

Heather said...

That sounds like a long but productive visit to the clinic!
We go to chop too. They are super unorganized, but they are good. I wish I lived closer to a more organized children's hosp. It just seems like Caleb NEVER gets exactly what he needs around here. I hate PA.

Tara said...

I'm so glad you had a great experience. I would love to go to a clinic like that - I just wish there was one closer!

Katie said...

What a great trip!
Im glad Brady did so well :)
No "anything ending in AFO" is great too, one less thing to worry about!