Friday, January 8, 2010

Down Syndrome Clinic

Hum. Maybe I do like bath time!

Check out my mow-hawk.  I am a punk rock baby!

Two days ago Andrew, Awa Grandma, Ellie Bear and I spent four, yes, I repeat four as in 4, cuatro, quatreτέσσερα, vier, quatro繁體中文版 hours at Dell Children's for DS Clinic.  There is a multi-disciplinary approach to Ellie Bear-Bear's care.  She saw an occupational therapist, a dietitian, a social worker, and a developemental nurse and Developmentalist.  

At the time of the visit, Little Bear was/is 3.5 months old.  

You know how they say to "never ask a woman about her weight"?  Well, I know that you (well the Grandparents) are dying to know.  So here are her stats:

Weight:  12 lb. 1 oz  (Birth Weight 6 lb 10oz)----90% on DS chart
Length:   22 3/8 inches  ---70-90%
Head Circ: 38 cm (yeah, I know it is in metric and the others are not.  I still have baby brain so simple addition confounds me let alone metric conversions)

Sweet Cheeks "performed" nicely for everyone. 

  • She consumed a 6 ounce bottle complete with a loud belch that would impress Uncle Matt in front of the OT.  
  • She then held her head up at 90 degrees while on tummy.  
  • She batted at stethoscopes while on her back.
  • She pulled a "babies gone wild" and lifted her shirt up to her face and sucked on it while kicking her legs up in the air like a cheerleader.
  • She rolled from tummy to back.  Then in front of the Developmentalist Dr. Del Angel, Ellie Bellie tried to roll onto her belly  (that one shocked me.  Bear-Bear is trying to roll the other way?!?!).
  • Plus, and I think she got this from me, she "talked" up a storm with everyone say "aah", "I" and then. . .are you ready. . . a 2 syllable coo shocking everyone.

Everyone says to have high expectations with children who have special needs.  However,  with DS, the high expectations were for her to be at a 1-2 month-old level, ie only lifting the head at 45 degrees while prone and starting to show interest in things.  Hello!  Expectations!  Ellie is at a 4 month-old level across the board.  

Now granted, many babies with DS are off to a bad start.  They have heart surgery and feeding problems.  All of their energy went to staying alive and then growing so these babies will be at a 1-2 month old level.  

We are so happy and impressed with Ellie's health and progress.  We could not ask for more.  We will continue to work with her while recognizing that Ellie will follow her own schedule. Something tells me that we have both a shaker-&-mover as well as a talker on our hands. . .I wonder where she got that from?

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