Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, May 07, 2013

The List

When a baby is born with Down syndrome there are several medical specialists they will see over the course of several years. Some kids only see one or two, some will see cardiology but only once, and others - like Angela - have a large team of specialists is put together.

When you adopt a child with Down syndrome, it's necessary to play "catch up" with all those specialists. Given our history with our kids with DS, there are some specialists my kids see even if they don't have any symptoms because my kids are known to hide things. ;-)

The first thing on the agenda is dental work!!! Check out all the teeth squeezed into his mouth! What you can't see is how many are rotten, or the ones that are fused.

It's very common for kids with DS to not loose their teeth without intervention. When this happens the adult teeth come in wherever they can find space, including the roof of the mouth.

We'll get that scheduled as soon as possible. Since we know it needs to be done under general anesthesia we'll schedule and ABR at the same time. I'm pretty sure his hearing is fine but since he'll be out anyway it's better to just get it done. We also know he needs his tonsils and adenoids out but I don't' want our summer totally messed up so we'll wait and get that done when school starts in the fall.

Last week I made a goal to get all of the medical and educational specialists scheduled that Abel needs to see. Here's who we're seeing in May and June:

International Adoption clinic
Ophthalmology (he had surgery for strabismus when he was 6, but one eye is still crossed.)
ENT (tonsils and adenoids need to come out!)
School assessment (so he can start school right away in the fall.)


Craniofacial (Both Abel and Asher will be seen with a question of submucus cleft or VPI)
Gastroenterology (he has really bad reflux and rumination syndrome.)
Cardiology (he has a history of self-resolved ASD and something with the mitral valve.)

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