The Specialist

Day Four

First off, I want to say thanks for all of your well wishes.  I really appreciate that.  I don’t think you can know how much it means.  🙂

So!  News!  I need to tell you that my son has out-of-this-world anxiety when it comes to anything medical.  He has been through more procedures than I can even knew existed, and he just falls apart.  But he did so well at this monster, four hour long appointment!  I’m so proud of him.  And I’m grateful to the staff for being as patient and all around awesome as they were.

The highlights are: they think they can help him sleep.  (He’s six years old and doesn’t wind down until 10:00 or 11:00 pm, no joke.  Then he sleeps restlessly and crawls into bed with us two or three times a night.  Apparently this sleep behavior is common for Williams.  I didn’t know this; I just thought that we were lame parents.  Rock on!)  His feet and legs are stiffer than they should be, but his arms are good.  The muscles on the left side of his face aren’t as active as the right side, and his tongue might not be working like it should.  They’d like to sedate him and take an MRI of his brain.  They’d like to test his kidney function and his calcium level.  (His kidneys had started to fail when he was younger, and his calcium level was way too high.  This has all been remedied, but we still keep an eye on it.)  They also took my blood and my husband’s to check for inverted genes.  They diagnosed him with ADD…which should surprise no one, but he’d never been diagnosed before.They measured his fingers and features.  They checked the coarseness of his hair.  They have recommendations, and I have a direction. I couldn’t be more pleased.

So more tests coming up, and then we’ll know more.  In the meantime, this specialist took four hours to discover more about my little boy than anybody else had in six years.  I couldn’t be happier.

You know that I struggled with whether or not to share information about Williams on this site. As writers, we take the time to not only create our work, but also the persona that goes alongside it. I was leery about introducing such a personal and, yes, sometimes trying part of my life. People often treat my son badly. They often treat me badly, as well. But this is who I am, and I suppose people can take it or leave it. I really hope they choose to take it. 🙂
By the way, the Jack Skellington doll in the last picture? When my husband proposed, jaunty Jack was holding the ring. My husband rocks, pure and simple! I am MAD about The Nightmare Before Christmas! We’re going to Disneyland this December just to see the Haunted Mansion done up in TNBC theme. Kids at heart, and all that.

 

Google history: pamidronate, beatles rock band, wordpress virus, leavenworth, stardust dragon assault mode, stealing lincoln’s body, stealth mode, gecko pictures, nephrocalcinosis, black rabbit of inle

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9 thoughts on “The Specialist

  1. Hope all is going well with the little one. I think it’s nice that you share your personal story, plus you have written it so well.

    Love, Jenn

  2. I guess this will surprise you not at all…I am a mad collector and lover of NIGHTMARE BEFORE CHRISTMAS….I have figures, toys and stuff all over the house..

    So glad to hear all this news about niko, and I am relieved for you and Mr. Mercedes. 🙂

  3. Why would people treat you or your son badly? And I’m so glad all went well, your boy is a trooper. (And so are you).

    Now that I understand your Google history? You want to steal Lincoln’s body!!! 😀

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