Down Syndrome Clinic

Yesterday we had our first visit to the Ds clinic in Houston. It’s the only one in any neighboring big city in our area. When we found out Eli would come to us with Ds, we were directed toward this facility but when I called I was disappointed to find that there was a waiting list.
The facility is small and only has one doctor who specializes in Ds. The rest of her team consists of social workers peditricians and therapists.
The week Eli was born, I called and put him on the wait list. A year later we were finally able to make an appointment. Crazy.

It was a good appointment and the doctors addressed all my concerns- thyroid, growth, OSA, milk, allergies…blah blah blah They were very impressed with him- I was a proud mama while all the doctors paraded in to check him out. 🙂

And it’s one-stop shopping- all the specialists he needs were in one building. Eli was officially evaluated too which was nice. I quit paying attention to milestones and ECI never updates me on where he is so it was good to know. They were very impressed with Eli and what he could do. He has some emerging skills that put him around 6 month milestones, but is also reaching 12 month milestones. He pretty much fell on a solid 9-10 months scale for his milestones. It stinks to know that he isn’t “on target” but it’s good to know where he is. We need to work on fine motor skills and mobility.
The doctor wrote scripts for ECI in an attempt to get more visits from our therapists so that is good news.

We are still waiting on Eli’s blood work from his thyroid and allergy testing.
I have heard varting opinions about going to a Ds clinic and at this point my opinion is “take it or leave it”. I think it’s an amazing resource and it’s great to go to a doctor that is currently researching Ds and working with the newest studies (Like the one awesome stuff currently going on at CHOP). She was aware that the Ds growth charts are out of date and in general it was just refreshing to work with her.
The downside is the wait…it’s not super helpful if you have to wait a whole year to be seen. All the suggestions she had for me to do (go to an ENT, have Eli’s eyes looked at, get a heart ech…blah blah blah) I had already done. It would be a huge disadvantage to someone who had not done any research and then showed up only to be bombarded with new tasks and doctors to visit.
Otherwise I think it is a great resource and I plan to continue to visit yearly but still primarily work with my pedi and naturopath.

That’s the latest new- we are busy prepping for Eli’s party. I have photos to edit and supplies to still buy- it’s gonna be a big party and we are super excited 🙂
Hope everyone is having a good week so far!!

Advertisements

8 Replies to “Down Syndrome Clinic”

  1. We have a Ds clinic here too in St. Paul but we only go once a year. And I really only go because I just want to hear from the specialist that things are OK. Our regular pediatrician is not trained for special needs, but she always does the research before we see her so I am confident that she is doing what needs to be done for Owen.

    I know it’s hard to hear that some things are not on target but Eli is doing really well. You have done an excellent job staying on top of everything.

    I can’t wait to hear about the party and see the pictures!

    1. That is so good tha you have the Ds clinic as a resource- I know many people do not, so it’s a huge blessing.
      I think a once a year visit is plenty for us too but that is just because I am so anal and on top of all the stuff that Eli needs lol

      Thanks girl! I can’t believe he will be one so soon! He really is doing so well, it just sucks to have “professionals” telling you where your kid is at, you know?
      P.S. Owen is adorable and I so love follow along on your blog 🙂

      1. Oh, believe me, I know exactly how that feels–I hear it about O’s speech and about his fine motor skills all the time. And it used to bother me like crazy, but I’ve realized that those words don’t define him and he’ll get there in his own time. Eli will too and it’ll be fun watching him change!

        And thanks for your kind words about Owen and our blog!

  2. I’ve said it before and I’ll say it again…Eli developing right on track for Eli. He’s perfect, and doing amazingly well! He is a little stubborn smarty pants and there is just so much going on that little cute head of his! So don’t you worry your pretty little head about anyone who says he is “behind” or “not on track” or whatever term they might use. He is doing exactly as he should for Eli. That and EVERY child develops differently, Down Syndrome or not. One might look at any given child and find areas that they are “behind” or “not on track”, and like Eli, find areas that they are excelling in as well. The difference is that with Eli, you are being told these things regularly due to the more frequent appts you must attend, the therapy etc. Just know that if we took Kieran to those same appts, we’d be told “He’s doing great at this, but is behind on this, and is ahead on this and blah blah blah” Right? So just celebrate his successes, work on areas of improvement and know that regardless of any of that he is indeed, perfect. 🙂 That’s just my two cents! LOVE YOU!

    1. Thanks girl- I know you are right it’s just like you said, I have it in my face all the time, so that really makes it difficult to not think about it. But I know every kid is different and I am so proud of where Eli is at right now and how well he is doing 🙂
      Love you girl- thanks for always encouraging me 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s