Seattle Children’s

So we made it through most of our doctor appointments here in Seattle, and five of our six doctors agree that based on genetic testing and physical exams Laelia has a new kind of arthrogryposis that we did not expect. It’s called Rumbustious Type I. This doesn’t mean much since it carries all the same symptoms of amyoplasia (which she also has), but comes with a few minor uncontrollable side effects. Most will be seen later in life–around her teen years, but a lot of the side effects are clearly seen in her currently; I just didn’t know what to look for before.

One  doctor, Dr. Witticism,  asked if Lali  was ever  noisy for no reason or lacking in restraint. I just figured that was every two-year old, but he just shook his head. Exuberantoisterous tendencies (I made him spell that out  for me)  appear first, followed by full blown Rumbustious (type I not type II which is worse). Kids with this condition are more likely to greet strangers in a supermarket and demand attention from them. They’re more likely to throw fits when having to leave fun places (like Lauren’s house). And they’re more likely to imitate every noise their mommy makes–from chewing to yawning to sighing. But if you ever try to get them to repeat this behavior for people’s amusement, they shy up like a mouse in a snake shop.

It was hard to hear everything he said while Lali rocked back and forth singing loudly. This prompted him to ask me if Lali had trouble letting me use the bathroom without  demanding attention, or if she’d eaten one meal without making a mess of some kind.  Apparently my silence was answer enough. “Uh oh,” he said ominously,  “it’s starting.”

Therapy for Rumbustious Type I, also known as “rambunctiousness,” is three fold: 1). Take lots of pictures of the behavior, 2). Give lots of affection and 3). Let the child laugh her head off as you chance her around the room threatening her with the tickling of a lifetime.

It’s okay. Stay strong everyone. I think we’ll beat this thing. :)

Happy April Fools!

6 Responses to “Seattle Children’s”

  1. Tam says:

    at the beginning you really had me going!

  2. Bethany says:

    Haha… I was wondering what your April Fool’s prank would be this year, and it STILL got me at the beginning! I think my girls might have Rumbustius Type I as well.

  3. Charilyn says:

    OK – you threw me off since it came on April 2. I was actually watching for something from you yesterday!! I was just thinking, “What kind of idiot is this doctor??” when I caught on! Love you guys – praying for you!

  4. Melissa Rowe says:

    har har! You had me going till “Exuberantoisterous”….then I scrolled to the end. :-p

  5. Joann S says:

    After being fooled 2 years in a row, I was hoping I would remember how good you are at april fool jokes! As I was reading, i thought “well, this sounds just like my grandchildren!” you are good! I bet Laelia will be a prankster also.

    love & prayers for you and your family,
    Joann

  6. Chelsea Powell says:

    I look forward to these every year.

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