Thursday, October 7, 2010

Down Syndrome Program

I have not done well with the 31 for 21 posts to raise awareness for Down Syndrome.

I have posted every day, but mostly about all of the stuff that we have been going through with the heart surgery, traveling to Boston, etc.

Today was a day of recovery for us, so I don't have a lot of exciting things to update. Thus, I am going to take this opportunity to share with you an amazing resource that I found out about while we were in Boston.

My mom has a cousin who has a little girl with Down Syndrome, and when we found out that our baby had Down Syndrome, my mom's cousin's family really reached out to us. They send us books to read to help educate us before she was born. They sent Addison the cutest dress- they sent us encouraging notes and emails. But, the best thing that they have done for us was send their friend Dr. Brian Skotko to meet with us while we were patients at the Children's Hospital (Thank you!).

Apparently there is an entire program dedicated to Down Syndrome in Boston. This program treats only patients with Down Syndrome and they have seen it all. Dr. Skotko works with this program and he very enthusiastically told us all about it (adding in that he has a 30 yr old sister with Down Syndrome) In this program, they provide the following services:

Developmental-Behavioral Pediatrician
* Clinical Fellow in Genetics
* Physical Therapist
* Speech Pathologist
* Nutritionist
* Dentist
* Audiologist
* Resource Specialist
* Program Coordinator

-taken from their website.

All of these services work solely with patients with Down Syndrome. They know what to check for, what to watch out for and they don't say "Oh, we see a patient as bad off as your daughter once every ten years" like we heard here in Vermont. Because they have seen it all.

Dr. Skotko told us that a lot of families like to schedule all of the appointments during one day, have a very long day, but get all of the appointments out of the way in one fell swoop in one location instead of having one appointment a week all over town for months on end like we are doing now. He also mentioned that as the patients get older and need to be sedated for many of the procedures and checkups, they sedate them once and do all of the checks at once.

This sounds really neat to me. I had no idea such a resource was available so close to us. Yes, I love our therapists and doctors here, but to have therapists and doctors who work only with Down Syndrome take a look at her and help us help her- that sounds so assuring to me that we would be do absolutely everything possible to help Addison achieve her highest potential.

We will definitely be taking advantage of this program, and I will be setting up the "day" appointments as soon as I can. I am very excited about this for Addison.

In conclusion, checkout this video that is also on their website.

I have wanted Addison to do ballet for as long as I can remember, and watching this video really strengthened that desire.

3 comments:

  1. Just getting caught up on your writings. Sounds like a great program, Deanna! I can see why you would like it. So very happy for you all to be back home, surgeryless. Hope you had a great catch-your-breath kind of day. :)

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  2. We're so happy for you that Addison is healing and getting stronger! Isn't it wonderful learning about new resources as we move forward on this amazing journey?

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  3. What an amazing resourse you have access to!

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