This afternoon, Etta and I went up to The Down Syndrome Clinic in Vanderbilt Children's Hospital. She's been to this clinic before. This was (I believe) her fourth visit, though it's been a whole year since she was there last. So, they put us in an exam room and the team of specialists came to her. We were there for three hours and she was running on a 35 minute nap that she took in the car on the way up there.
Etta eating snacks (Kix)
Signing for more.
Today she saw:
the attending physician who spent a lot fo time just gathering information from me and was impressed with Etta's progress.
a geneticist who gave me a copy of her Karotype! I never got a copy of it and I thought it was SO neat to see her little chromosomes. So, I scanned them in for you! :) You can see her three little chromosomes toward the bottom above the number 21 indicating Trisomy 21 (a.k.a. Down syndrome). You may also note that she has two X chromosomes and no Y ones. Believe it or not.. she's a girl! :) If you click on the image, it will open larger in another window. The smaller rectangle at the bottom are all of her chromosomes jumbled up together before the lab guy paired them all up.
a research assistant who asked if we'd be willing to participate in a long term research project on people with Down syndrome. We consented. This is going to involve some blood (that they will just get next month when she has it drawn for Endocrinology) and it will invole a 45-90 minute phone interview once a year. She promised to call during nap time. ;)
the Speech and Language Pathologist who encouraged us to keep doing what we're already doing and to get involved with Kid Talk (more on that when we actually get into the program).
the Physical Therapist who was able to see how exhausting it is to keep up with my very busy toddler. She's quite happy with her progress to say the least.
the Occupational Therapist who also got to witness how active Etta is and she gave us some ideas as to how we can help our little "sensory seeker"" exert that energy in a positive way... Most of these ideas involve heavy objects (sandbags in her little stroller, weighted spoon/fork) or things that cause resistance (swimming, thicker liquid in her straws). She also suggested we talk with Etta's OT about looking into a weighted compression vest
and of course, we got to see the director of the clinic, Mrs. Melissa who was my very first point of contact with the Down syndrome world when Etta was just days old in the NICU at Vandy. She's SO sweet and wonderful, and amazing, and knowledgable, and LOVES what she does and the Down syndrome community and we love her!
It was a LONG afternoon! We left there at 4:00 JUST as rush hour was starting and arrived home around 4:40. Etta stayed awake all the way home which was pretty impressive! She went to bed at 7:00 (normal time) and PASSED OUT. I think she fell asleep in two minutes!!
I don't know about you, but I am SO ready to do NOTHING this weekend! :)
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