Walking for a Cure and Trying to Employ My 14-Month-Old

I’m still here, even in the midst of all the awesome guest bloggers I’ve had so far this month for TSC Awareness (still accepting guest posts). You might remember me from such posts as Bite Me, United Healthcare or Bite Me, Medical Billing Department That Won’t Call Me Back.

The last week has been really busy. I’ve been doing some freelance writing, which has been immensely rewarding in all ways but financial. But if I keep it up, I’ll have that Italian villa by the time I’m 127. I write for the parenting and education divisions of an online media company. No seriously, I write about parenting in, not one, but two locations. Makes you rethink your Google searches, huh?

The Georgia Step Forward For a Cure took place on Saturday May 18 at Marietta Square. So far it has raised $70,000 and counting–thank you Dee and Reiko for organizing this year after year. I was also named as the new chair for the Atlanta/North Georgia TS Alliance, which I’m pretty excited about. Sarah, a reader who has been following along with the guest bloggers, asked me if I would be there. I told her to look for the obnoxious yellow shirts. She found me.

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Connor is doing well; he’s still progressing, although it can never be fast enough when your kid is delayed. We just hit 14 months, and we’re hoping he’ll crawl soon. He can hold the position if we put him in it, it’s the moving part that is the problem. He can move backwards when he’s on his stomach. The problem is, he doesn’t ever want to be on his stomach. He will expend more energy trying to flip himself over when I have him wedged in on both sides, than he will to move a couple feet. He can also stand with minor support, but again, we have to put him in the position. He doesn’t pull himself up yet. I’m also desperately hoping to hear some consonants soon. He has mastered uh, and quite frankly, at this point he can add a ffff and a kkk and I’ll be the one parent that’s thrilled.

We recently increased his meds when it seemed some sort of seizure activity was breaking through again. It helped, but I still occasionally see his eyes go up and linger a few seconds, or he’ll stare off to the side with tightly pursed lips. They don’t seem to have a lingering effect like previous seizures though.

His delays do seem to have created the very player of son I swore I wouldn’t ever raise. I’ve never formally announced his health issues in music class, although I also don’t hide it. Some people have become aware as the music teacher is also his music therapist, and they have overheard us talking. I also wear my TSC shirts to class. But some may actually believe that I am such an incredible disciplinarian, that I have actually trained him to never leave my side (easy to believe when you’ve never seen him try to empty his entire bottle into his belly button). So there he sits, very cool, very “you come to me, I don’t come to you.” And the girls, oh yes, they crawl right over. They can’t help themselves. He’s so James Dean, if James Dean traded his cigarettes for music sticks.

I’ve also been looking into just how young kids can start gymnastics because it would be a shame for Connor to ever lose the ability to do this:

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We might be looking at a career gymnast. Of course, he has also shown an interest in dentistry.

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And Salvador Dali impersonation.

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4 thoughts on “Walking for a Cure and Trying to Employ My 14-Month-Old”

  1. Good job being named the chair for the Atlanta TS Alliance! Keep up the good work, they need people like you to make a difference.

  2. Reading about your son, he’s very similar to ours! He’s 20 months old and cannot stand yet. He also has a hard time crawling, also holding the position but just not wanting to “go”! He sure does get around though! He uses his butt and his legs to scoot all over! He has begun to accept weight on his knees and we pray that our strenuous schedule of daily therapies help his brain “get” it sooner or later! He is such a joy though! Always giggling! Thanks for sharing your story!

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