Thursday, May 28, 2009

Down Syndrome Clinic

Dylan and I went to the Down Syndrome Clinic at Boston Children's Hospital today.

Looking back at the day, I'd say there are two things for certain: 1. I love my son even more right now than I did this morning. 2. Lugging him around for long periods of time in the infant car seat is realllly not a smart idea anymore. Oww my achin' back!

Have you ever been to one of these clinics before? We hadn't and it was actually pretty cool. Exhausting to be sure, but cool nonetheless.

The first specialist we met with was the Pediatric Doctor. She sat and talked with us for about an hour and a half. An hour and a half! I thought this was quite impressive, as most (Ok, more like all) of my previous experiences with pediatricians have felt very rushed. You know, those appointments where you feel terribly guilty for asking a question. But this doctor was not like that at all. She was great. We discussed Dylan's medical history as well as any concerns that we are currently having. We talked about various issues including signing (I need to start incorporating more signs on a daily basis!) and she gave me the name of a great website called Signing Savvy. She listened to his heart and sang songs to him. Overall, a very positive experience.

Next we met with the Nutritionist. She and I talked about the types of food that Dylan is currently eating as well as what our next steps may be. Along with experimenting with more "table foods", she also recommended giving Dylan vitamin D. I mentioned how the little guy is not having much luck with sippy cups and she suggested the good ol' honey bear cup as well as the nosey cups. Yes, I know I've been saying this for a month now, but I think we'll give those a whirl. No really, this time I mean it! I think.

Then, we met with the Physical Therapist. She worked with Dylan for about .2 seconds and said to me, "Wow! He really likes to arch his back!". Um, YES!! Ugh! Why oh why is he so darn archy? She thinks that it is his way of stabilizing himself. That he is in the habit of doing it, feels more secure that way, and just needs lots and lots of practice with sitting. Dylan showed off his clapping skills (many, many times!) and did an excellent job while on his tummy. He actually pushed himself up onto his hands, which was nice to see.

After PT, Dylan and I went downtown for a couple of beers. Kidding! Just wanted to make sure you were still paying attention...

We met with the pediatric dentist next. While I am fully aware of the fact that Dylan does not yet have any teeth, we still were encouraged to meet with her. She said that it appears that Dylan's top teeth are about a month or so from making their appearance! She thinks that those will be his first teeth as she did not feel the bottom teeth quite as well. Ah!! I can't wait to see how Dylan looks with teeth!!

Last was his hearing test. From the results of the ear drum test (I'm too tired to Google the medical term for it), it appeared that his hearing was just fine. However, upon further examination, she thinks that he may be having trouble hearing soft sounds. He has to go back in three months for another in depth exam.

Whew! It's no wonder the little guy fell asleep in the car on the way home...and then proceeded to sleep for the next 3 and a half hours.


Wendy P said...

We'll actually have our first Ds clinic experience in July - we've seen the geneticist up 'til this point.

I'm glad things went so well! Was the ear test a tympanagram (sp?)?

Karly said...

Sounds like you have found a really great resource, Laurie. Congrats on your great day.

ds.mama said...

Rootbeer I hope :-) Paying attention? I was riveted. I had no idea there was such a thing as a DS clinic. How is it that one gets to go there? Did you need a referral from your primary pediatrician? I want to go to Boston! We could hit up the aquarium on the way out (with all that left-over energy, lol.)

Angela said...

WOW!!!!!!!!!!!!!! I am uber-jealous! That sounds amazing. I've never even heard of a DS clinic. Is it a traveling thing?, did you ever get him an upper GI? The archy thing just reminds me so much of B before we found his obstruction. Not to freak you out...

I also really need to incorporate more signs (sigh), and we're having no luck with any kind of anything other than the bottle (double sigh).

Lis said...

Sounds like an awesome day!

Tausha said...

Thank you for this post. I have never heard of a Down Syndrome clinic, I am going to see if I can find one in our area. I love that the Doctors checked everything and gave you great advice, thanks for sharing that. Another good sight is if you haven't heard of it already. You can get videos for them to watch to teach them and you sign, they are great and have great music and songs. We get them for free to borrow from our early intervention place. I loved the Beer comment!! Thanks for the great and informative post.

Cathy said...

Sounds to me like I should be making an appointment at the Ds clinic here in Chicago. Glad it went well!!

Sharon said...

I'm glad your appointment went so well. We really are fortunate to have such a great clinic nearby.

My name is Sarah said...

This is Joyce. In all these years we have never been to a Ds clinic. Sounds like great experience. Do you just make one appointment and then get to see all the specialists?. That's great and it seems like a huge time saver.

Amanda said...

That sounds great! What an awesome opportunity to get so much time with the experts. Totally know what you mean about dr's appts feeling rushed.

Jackie said...

Sounds like a great resource and a very informative day. No wonder Dylan fell asleep on the way home indeed!

Jennifer said...

Thank goodness for places like these. Our DS clinic here in Sacramento was a wonderful experience as well. The hearing thing is so interesting. We too get mixed results all the time with the tympanagram and the other tests. It's an ongoing issue over here too. We went to a DS clinic in the Bay Area and it was an ok experience, I wasn't as impressed with their knowledge base there. But all in all, it's great to get that specific one on one interaction with the specialists all in the same place. We didn't get to see a dentist that specializes in DS- how cool that you were able to!!!

Mindy said...

Liam went to our DS clinic back in April. We only really need to go now if we have specific questions about his health or development that our regular pediatrician isn't able to answer. It is great to have a great clinic.

Does your clinic offer any additional services? I know ours does IEP reviews if you ask (a great resource that very few know about!). Ask and see what else they can do besides health care.

artbetty said...

Good news.Keep it coming.It also helps others to realise how lucky'Blessed we are.God Bless You All
Art Betty

Momma Kat said...

For signing, you should check out We love their DVDs!! They teach signs and incorporate them into songs. My 3.5 year old has a vocabulary of 200+ signs.

Signing Time also has a Baby Signing Time series specifically for the younger set. These are great too!!

Ruby's Mom said...

Thanks for posting this.I was thinking about making an appointment at the DS clinic at Dallas Children's hospital,I have to go there soon anyway for a check -up on Ruby's heart.

Amy said...

Sounds like a very informative day. I hope Dylan liked his beer. :-)

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