Clouds, May 2010

Clouds, May 2010

Sunday, June 24, 2012


This is a before and after of H's haircut :)

I've missed recording a bunch of updates because things seem to be happening very close together lately.

Last week I tried giving him his medicine one day. I tried twice and it failed twice.

The medicine is in the form of a patch, which was our final solution since the other medicine was not available in an extended-release in the liquid form. The reality of getting a capsule in him is non-existent. Everyone, including doctors that we spoke with, said we should just empty the capsule into yogurt or juice or something. Sounds simple?

1. Hayden will not eat yogurt-- not really. Certainly not to the point that he would get an entire dose of medicine in. He might taste it but that would be the most to expect. Same goes for any similar substance. Heck, I could put a tub of creamy whipped topping in front of him & he would not care less about how much sugar & yumminess is in there. He would not touch it because of the texture.

2. In theory, we could try applesauce because he likes it. But he will never eat (or drink) anything on command. He would never taste something if you told him to try it, or if you said it's delicious, or if you said, "take a bite of this & it will turn you into a car."
3. Speaking of drinks... H is a no-juice kind of guy. Or milk for that matter. (Tried sneaking an antibiotic in his milk when he was 3, out of desperation, and that was the last time he ever trusted "milk" from his parents.) We could even flavor it with all the chocolate or strawberry syrup in an entire bottle & he still wouldn't be interested. He likes what he likes, and what he likes is water. Just water. 

So, we got the patch. And I applied it right between his shoulder blades since that's the only place I could think of that he shouldn't be able to reach it. Thought wrong. I guess I conveniently forgot that another side effect of fragile x is hypotonia.

But I humored myself and tried again, and it failed again. At least the first time he managed to peel it off, he told me he was throwing it out. The second time, he was much more sly about it and I found the patch crumpled up on the floor. Having no idea how long it had been there, of course.

In other news, the big guy is now 7 years BIG!
I was taking video of him riding around the yard in his new battery-powered dune rider (I think it's called).
In the first video I was coming around the corner with the camera and he was so proud, and he yelled, "Hi Mommy!"
It's about 30 seconds and I must have watched it 20 times already. I waited so SO many years to hear him say my name that it still sounds new and it still sounds miraculous.

In the second video, in a matter of about 20 seconds he does three pretty amazing things... First he says, "Go Hayden!" because he is so proud of his driving, as he should be :)
Then, he continues to cruise across the yard with one hand by his ear pretending like he's talking on the phone (which we corrected him from doing and he thought it was funny).
And last, he comes to a stop and he actually cheers for himself and claps.

It is one thing to witness a child develop and progress, and you have so much pride built up in their achievements. I would expect that... you are the caregiver and you remember every step of the way.
But when a kid recognizes their own success and you can literally see how proud they are-- of themselves-- it is just absolutely beautiful to see that kind of self worth.

That means more to me than anything at which Hayden differs from a typical peer, because I don't even know how I would begin to teach him that if he didn't feel that way on his own.

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