Support Registry Update

The Threenager

In support of
Lewis/Laczko family
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Forget the Terrible Twos; the real struggle for parents is the Threenager. 

Add a medically complex child to the mix, and you run the risk of overindulging the little gremlin. 

I shouldn't have laughed this morning, but I did:

Leo: "Daddy, Daddy, 'ook."
Brian looked at Leo. Leo pointed at Brian. 
Leo: "Daddy's a buttcheek."

The correct response is probably, "Let's not talk like that. Let's use other words." But when there was a time you didn't know if your child would ever talk, when even medical providers didn't have the data or the comps to even estimate, you kind of rejoice in impropriety. 

A couple of weeks ago, Leo had an early-morning MRI at Vanderbilt to look at his brain now 1+ year after surgery, before we continue weaning medication. Everything looked as expected post-surgery, but surprisingly, they did not detect PMG in his right hemisphere. We've always been told that he has bilateral PMG. With the removal of his left frontal lobe, that portion of PMG is gone, while some abnormality remains, predominantly along the left middle frontal gyrus. But the right hemisphere? No PMG detected.

This doesn't change anything — therapies, medication, prognosis, etc. — but is ... new information. We are cautiously happy about this news, because whenever you find out your kid has less of a brain abnormality than you thought, that's good news ... right? We'll take it.

Soon, we'll register Leo to enter the school system this fall. We're hoping he can attend preschool at his sisters’ school, and that they'll have the resources to accommodate his IEP. Right now, my schedule is still built around his appointments; it's tricky to fit in my own doctor appointments, work hours, and time with my other kids when there are weekly therapies across town. It's unfathomable that this fall, I might be able to easily schedule a teeth cleaning. I'm looking forward to the easing of the weekly toll on both me and Leo, if that's OK to say. I think it is. It must be. 

Now, my current favorite parts of Leo: He's potty-training (!), talking with his friends at school, saying "nice catch" when I drop the ball he tosses me, insisting on being the one to feed our dog her meals, delighting in swinging on the swingset, and volunteering to go on every errand run.

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