Tuesday, January 19, 2010

Down syndrome clinic

WOW what a day!!!

Today we took Emily to the Down syndrome clinic at Boston Children’s. It was a fantastic experience all around.

We met with Dr. Brian Skotko who sat with us and went over Emily’s history in total. We spoke about the possibility of an Autism or OCD or ADHD dual diagnosis. Dr. Skotko agreed that based on history and what he was seeing, there is a strong possibility of Emily having Autism; we are meeting with a psychologist.

After we spoke about things that could lead to a dual diagnosis we spoke about communication and Emily will be going back to Boston to b evaluated for a more comprehensive augmentative communication device than the TapTotalk she is using now.
To get a clear picture of all factors that might interfere with behavior/communication we are gonna get a sleep study done (OK one is being ordered stay tuned to see how it goes). I really have no idea how in the world this study is gonna happen

Then it was on to talking about GI. Emily quite often chokes while eating so she needs a GI workup, she has had swallow studies but Dr. Skotko is interested in finding out if the acid from reflux has done lasting damage. We are starting on Zantac.

We rounded out the day with a visit from nutrition…….turns out we are good in that department…………talk about irony.

I LOVED how everyone came to our exam room and we stayed put. It was so much better for Emily (and therefore us) not to have to room/floor/building hop. We go back in 2 months to talk over the outcomes of all of the tests and appointments and to come up with a plan……………it was a great day.

SO here’s a funny…………Dr. Skotko wanted an x-ray of her stomach which meant we needed her to lay naked on the x-ray table. I got her all into position (so I thought) and thx ray tech came over to adjust her WELL she flipped cause some strange dude was touching her. She hoped off the table and starting running around the room. The X-ray tech was mortified and I was too embarrassed and stunned to be mortified. Finally got her back into position and we had great success in getting her picture :)

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