Thursday, November 14, 2013

Ds Clinic

Once again, I am so glad for a fantastic city like Houston that is filled to the brim with all sorts of medical facilities and experts to help us raise all of our kids better, but especially to meet the needs of Johnny. Today we had our long anticipated meeting with the Down syndrome clinic. We are also grateful that all of our specialists (except for ECI) are within the TCH (Texas Children's Hospital) system. This means that all of their records are linked up and can be found quickly for each doctor to reference. Which, by the way, can we appeal to get ECI into the TCH system, it would make my life THAT much easier!

We are fairly well researched and connected as far as Down syndrome goes, but we really wanted to get Johnny into the clinic. It takes awhile to get in (we have been waiting for 10 months...that is a short wait), but I found the experts to be worth it. While they only gave us a few tokens of new information, we were pleased for several reasons.

First- They are experts. Hearing them say that Johnny is doing great and is healthy, is totally different from my pediatrician (who I love) saying that he is doing great and healthy. They see kids all over the spectrum on a regular basis, they know what great looks like. My pediatrician rarely sees kids with Ds, their sample set to pull from is just smaller. Additionally, our OT, our new Speech Pathologist, their Speech Path., their OT, and both Doctors who assessed Johnny were all on the same mark for his development. To hear 6 different medical professional make the same ascertains for Johnny is important, it means that he really is measuring at that mark.

Second- We needed a baseline and we needed it in the official system. We want to be diligent and proactive about his care and meeting his needs. In order to provide the best care for him, we needed to have a good idea about where he is starting. We find this to be vastly important for measuring his care later on.

Third- We got a lot of questions answered. The experts there are happy with kids with Ds measuring at half their actual age. Johnny was assessed to be at a 10 month age. This means that he is doing really well and that we need to keep on doing what we are doing. Of course Mommy and Daddy want to catch up a bit more, so we will add in more techniques as we move forward. We have been encouraged to do three things with Johnny- read, move, and sign. It seems so simple. Our Doctor said the best therapy (outside of what we already receive) is to read to him as much as possible. He said that physical activity is important for maintaining a healthy weight which kids with Ds have. We were encouraged to continue signing by every person we talk to. I thought it was fantastic to hear such simple encouragement for raising him.

There were several other facts, tips, and bits of information we learned today, but we will leave it there for now as I process through the additional information. It was a blessing to add more experts into our growing list and to have more feedback for our boy.

 Johnny and His BFF

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