Friday, August 14, 2009

Down syndrome clinic

phew - I am worn out! We had Kira's first visit to the Down syndrome clinic today. She's seen our geneticist annually up until now.

This was our schedule:
9:15 arrive
9:30 OT consult
10:00 geneticist
10:30 PT consult
11:00 Hearing eval
11:30 Speech consult
12-1 lunch
1:00 - summary meeting with geneticist

I was so nervous. Kira has always had her therapies once a month and I feel that that is just right for her. But, I was so scared that all of these second opinions would show that maybe I should have pushed for more. I was also so worried about her hearing eval.

I had nothing to be worried about, though! All of the therapists agreed with Kira's current stable of professionals. The PT recommended having her fit for shoe inserts (not the full ankle kind) - more for later development. Her current PT has been on the fence about it. The PT also agreed that at 3 we should get her involved in 1 or 2 community based programs, like tumbling, soccer, or dance. Kira walked up and down the stairs for her and showed off her "blast-off" skills. Jackson was with us and left the PT room saying, "I LOVE the Down syndrome clinic!"

The OT was impressed with her skills and gave me some more ideas on increasing her hand strength. She suggested letting her push golf tees into styrofoam. She also said we could start working with a small pair of tongs - to get started on the motions needed for using scissors.

The Speech path wants us to work on the "guh" and "kuh" sounds - and was really happy with Kira's language development. Interesting factoid - she said that at Kira's age (almost 3) 10% of the child's vocabulary should be verbs. I didn't know that - I need to think through Kira's words and see if she's there.

Kira's current therapists feel that there is a chance that she might not qualify for PPCD (our 3-5 program). She may not be "delayed enough." The therapists at the clinic agreed and offered me lots of suggestions for what we can do if she's not in PPCD. Her geneticist suggested letting her stay up all night, the night before the assessment. ;)

The geneticist also said that if she does qualify for PPCD, she thinks we should do a few months in the program and then transition her into a typical pre-k. I'm not sure what our options are with the school district, so I've got some work to do.

AND Kira totally passed her hearing test!! No fluid in her ears! I was so happy.

Good day all around and I'm so thankful to have access to such great resources. And now I'm going to bed.


  1. I was about to call but decided to read your blog first. Sounds like you had a great day all around and you can now cross this off your list and quit running the "what ifs" through in your head.

    I'll call you tommorw to get the full version.
    Love you!!!

  2. You didn't need proof she was a superstar, did you?? ;)

    So glad to hear it went so well. But really, I truly knew it would. Kira is doing SO great! YAY!

  3. That's all wonderful! Kam told me you were going to have a long day and I'm very glad it turned out well.

  4. Good to hear it went well! She seems to be doing great!!

  5. Sounds like that day went really well and that you got some good suggestions and input, too!

  6. I am always so impressed by Kira. She's fantastic.

    (We just got shoe inserts too. These ones: But since it's summer, I can't bear to make her put on shoes to wear them much yet).

  7. Sounds like it went great! Thanks for posting specific info about the is always good to hear suggestions from other therapists and to hear experiences from other parents!

    We had Pollywogs, too, by the way. They are a minimal orthodic device, but they do seem to make a difference.

  8. That's great! My stepsister teaches PPCD in Richardson school district. If you have any specific questions I could ask her!

  9. All terrific news! That's terrific! Celebrate by doing lots of verbs!