Monday, April 22, 2013

The one where we meet the geneticist

 Last Thursday we hauled the two littles in the pouring down rain downtown to Children's Hospital.
 I want to say before I say anything else that if you ever think your life is full of worries you should just haul yourself to your local children's hospital. I was sure that at any moment I was going to burst into tears seeing all those sick kids and babies. Dave said he felt silly being there with our Ginty (Sam calls him "g'nt" and it's kind of stuck), but I said our very level headed ped wanted this sorted out, so sort it out I shall.
 We were there for many hours. And I completely ignored the silly med student when she tried to say she felt some difference in the two sides of his jaw. (The physical therapist we saw the day before said she felt pretty sure the difference in his face was from torticollis.)
 When the geneticist finally arrived she looked him over, asked a few questions, measured the heads of Dave and Sammi (GIANT) and declared him genetically normal aside from a congenitally large head. She said his cheek difference was likely due to the torticollis and that he had no other signs of hemifacial macrosomia.
In the time since all of this started I have been working on his physical therapy with him and he is sitting up much better. And sleeping most of the time in his crib. He is still leaning in this photos, but not nearly as much. We will see the PT lady again in a week.

And me?  I could cry from relief. I felt sure he did not have HFM, but it was a long week or so thinking there might be something very wrong with my baby.

Also I am mad. It seems like from the moment Grant was born there has been a line of people who want to declare this, that and the other wrong with him. And I honestly do not understand why. No one ever acted this way with the other two kids. In fact, something really WAS wrong with Jack and it took me 6 solid months to find a doctor to help us.

Frustrating. And I have a strong feeling this is not the end of it.

Anyway. For now my Ginty is back to being his grumpy self and I am focused on finding people who can fix whatever the hell is wrong with me. Onward and upward!

9 comments:

  1. SUCH a relief! I'm so happy for your good news. I saw a commercial for some RA drug this morning and it made me think of you :(. I truly hope that you will get good news about yourself, too.

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  2. Yes, such good news!! Also, your kids are way too cute. :)

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  3. Sweet photos, and I am celebrating your good news with you! Hoping the same for your health issues.

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  4. Yay for good news!
    JT had torticollis and wore a helmet and had pt. I wonder why the doctors went to the extreme on the diagnosis?
    By the way, the pictures are just adorable!

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  5. Been thinking of you guys and am over the moon happy with the latest news! Hope the next few appointments for you are equally good.

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  6. Am so glad you got this good news. The kids pictures are so cute! You are in my thoughts.

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  7. They are so precious, Sarah! What great news, and glad that your Mommy instincts won out for Grant. :) I hope you get good news soon, too!
    xoxo

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  8. He does have " a face"...a completely adorable one. I never thought it would end up being anything bad. I have to read your blog all the time to just see those adorable children. You are so blessed w/ them. The other things I like to look at too but they're in second place. So happy for your family.

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