Down Syndrome Center: visit 1

Today was our first visit with the group at the Thomas Center for Down Syndrome. I admit, I was feeling a bit anxious about it. What would they say about Mary and her development? What have we been doing wrong? Right? So many unknowns for me and that never helps.

The team consisted of a speech pathologist, an occupational therapist, and a pediatrician. It was a typical evaluation, similar to the ones I’ve had in the past for Alex. There were a lot of questions about her feeding and development. The occupational therapist did some tummy time with her to see what she did and how she reacted. The speech therapist gave her a bottle to see hows he ate. The pediatrician checked her reflexes and how she moved.

The speech pathologist loved how vocal and expressive Mary is. Mary uses many different sounds to express wants and feelings, which is great. She did tell us that Mary tries to eat faster than she can swallow so she is losing some of the milk out the sides of the her mouth. We need to get better about pace feeding her, dropping the bottle a bit after 3-4 drinks of milk so she can swallow it all.

The occupational therapist was impressed with Mary’s head control and overall level of activity. She did point out that Mary will use her lower half more than her upper half during tummy time and end up pushing her head downward. We need to start holding her butt down during tummy time to force her to use her upper half more. This will strengthen her neck muscles more, encourage her to use her arms to push herself upward, and eventually lead into crawling.

The pediatrician told us that they typically want to see the babies again at 6 months, though with the way Mary is acting and developing it may be sooner (for good reasons!). She is pacing the 25th percentile curve very well, a big difference from Alex’s 99th percentile growth curve as a baby. They will do a recheck of her thyroid as well. Everything looked good and she was impressed how on top of appointments we were (ophthalmology, genetics, and cardiology were all seen already).

Bryan and I felt good about everything said at the appointment, feeling a little more like we know what we are doing. They gave us a copy of the book Gross Motor Skills for Children With Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome) by Patricia Winders for reference. This is not a book to sit down and read through. I am interested to see what information it has for us though.

This appointment made me so grateful for the Down syndrome community as a whole. The blogs I have read that have prepared me for the possibilities ahead of us, the Down Syndrome Association and all of their resources that helped us get a jump start on Mary’s early intervention, and just our overall support network lifting us up and cheering us on. Thanks to this community, I didn’t feel alone or unprepared going in and I sure don’t feel that way now. Thank you!

And goodnight.


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