Saturday, June 30, 2012

Sie Center: Day 2

So, second day we met with the nurse practitioner and the physical therapist. They took Daniel's measurements: 12 lbs 15.9 oz, 24 inches long and his head is 15.75 inches around. These measurements put him squarely at the 75th percentile for kids with Down syndrome. (And after his 4 month appointment in July I'll tell you how he compares to typical kids.) The nurse practitioner talked to us about some of the same things as the geneticist, about the different conditions he's at risk for, when we should do testing, etc. She gave us a schedule so we know which tests we should be doing and when. We discussed his eating and sleeping habits and health in general. She gave us a fax number to send results when we do any testing. (Apparently they keep up to date records on all the kids, even if they're only seeing them at the Sie Center once or twice a year.)

After that we met with the physical therapist. This lady is The Expert on motor skill in kids with Down syndrome. She's the author of a book on gross motor skills  and it is obvious that she loves her job. (Incidentally, I ordered that book a while back, so it was extra fun to meet her.) She was impressed by what Daniel is doing so far and excited to hear how motivated he is when it comes to movement. She showed us lots of things we can be doing with him, which we've been working into our daily routine. For instance, typical babies naturally sit up very straight. Babies with Down syndrome tend to slouch. A lot. So she gave us several sitting positions to hold him in that help him work on keeping his back straight while he sits. Also, after we told her that we had a copy of her book she showed us specific sections we could work on with him. Anyway, it was lots of fun.

They also have a speech therapist, who we didn't meet with. It seems obvious that a 3 month old wouldn't need a speech therapist. BUT. They actually recommend kids with Down syndrome start speech therapy at 9 months! Obviously they don't expect him to start talking at 9 months (or even soon after that) but there are different things the therapist can do to help him get ready to talk. They want to be proactive about it, instead of waiting until a kid is 3 years old and still not talking at all. So that's definitely something we'll be discussing with our case manager here.

Last thing on Thursday morning we met with a social worker. She gave us information on the various government benefits Daniel is eligible for (most of which we already knew about.) Good stuff though.

Oh, and one thing I forgot to mention from our meeting with the geneticist. With very rare exceptions, males with Down syndrome are sterile. There have been a few reported cases of men with Down syndrome fathering a child, but it's rare enough to be reported to the experts.

And I believe that concludes my summary. Questions?


  1. I believe I've heard that speech therapists also work on eating issues too, is that right? Because that could be part of why they start that early, right?

    I think I love this center and I am so glad you guys have access to it.

  2. Interesting stuff. Can't wait to see Daniel next weekend!

  3. Thank you for sharing this with all of us. I find it fascinating and it feels like we are sharing the journey with you.

  4. I just think you two are amazing, pro-active parents. Daniel and Will and Kalena are so lucky to have you.


Note: Only a member of this blog may post a comment.