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The Last Hoop

 

I got the call yesterday.  The Genetics (Dysmorphology) Department at Rady Children’s has an opening tomorrow morning. This was the last person we were waiting to see.  They provided us the opportunity so we jumped – the last hoop before testing!  We met with the director of Genetics at the hospital yesterday and she was wonderful!  We had extensive family histories taken(she was impressed that I could confirm that Will and I were NOT related at least 16 generations back), lots of measuring and lots of discussion.

The Fat and the Skinny of things:

The doctor confirmed that Gracie needs testing, but she ordered some more detailed karyotyping tests to ensure nothing is missed.  The blood panel and thyroid testing will all be done simultaneously next week when we go back in for physical therapy.

The torticollis is a bit of a concern since there doesn’t seem to be a cause for it as of yet.  Spinal films have also been ordered for Grace.  She wants to make sure that her tilt isn’t due to a tumor or any other growths or abnormalities on her spine.

We were given the option of a helmet to round out the flat part of Gracie’s head in the back.  We rejected this option since it would be for cosmetic reasons only. Six months in a helmet 24/7 for beauty didn’t seem right.  Hopefully, her hair grows in and Annie doesn’t try new haircuts on Grace in the future.

Her mouth and tongue need to be addressed.  We are adding an occupational therapist to the list of people to see.  If it’s not congenital, there is always the possibility that her constant mouth gape is due to small openings in her nose and she has figured out she can breathe better with her mouth open.

 

 

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3 Responses to “The Last Hoop”

  1. Gwen says:

    I’m glad you could get an appointment. The waiting can be really frustrating. Just wanted to say that I’m thinking about you and Gracie. And, btw, Sarah’s head is very flat in the back (a helmet wasn’t an option–she was too old) and you would never notice it. So I think you’re right not to worry about the helmet. Hugs!

  2. bryn says:

    You are an amazing mom! This is an extremely crazy time and I admire the way you handle it with grace (so a little pun intended not necessarily so! lol). Your attitude is inspiring. You do an incredible job with your family. I am grateful for your example. I pray that answers are found and that you will guided to the best drs for Gracie.

  3. Janelle says:

    My cousins baby has both torticollis and plagiocephaly as well. His head was pretty flat and someone deformed so he is in a helmet right now. As of now, they do physical therapy for the torticollis but they went through some of the testing and everything. Hope all goes well and know that you and Gracie are in my prayers!