the patch

October 13, 2012
We finally got the patch on H!

We had been waiting for summer to end (between swimming, sweating, etc, nothing to affect it staying in place)... then we were waiting for a long weekend when we would be able to give it a few days... otherwise the pediatrician said it would not be enough to gauge the efficacy.

Finally before Columbus Day weekend we were going to give this a go, but H developed a nasty cold the Thursday prior. He didn't even return to school until the following Wednesday (he has never been out that many days in a row; he's one of those kids that gets an attendance award at the end of the year).

So the weekend of October 13th became our next try. With Dan attending a golf outing that Monday, we would be able to get three days in with both of us home at the same time in the morning to hold Hayden steady & apply the patch. I also wanted Day One to be when we were home & not doing much, & therefore able to really monitor him.

The patch was on for a good nine hours so for that alone I am grateful. Things started out rough because he would not sit still, so when I put the clear sticky film over the patch (the one the pharmacy had to special order which also delayed our inaugural attempt), it crumpled in one corner. It is difficult enough in itself because it is so thin... but with a moving target it's even worse. So in order to hopefully make sure the thing would still keep the patch in place, we used a second sticky square (an unforeseen detail which unfortunately made the removal process quite challenging).

After the first half hour or so he was finally OK... partially distracted by a run to DD with Gad. When we gave him a bath that evening I was able to get the patch off with baby oil gel, but it took a couple of tries. So at that point he already seemed worried about wearing it again.

However, trying to maintain the positive, the fact is we finally made progress. FIVE YEARS AND ELEVEN MONTHS after he was diagnosed... finally... some medicine in him. Hallefreakinlujah.

I tried to coach myself into accepting that whether this ends up being an appropriate treatment or not, as long as we get a few days in him we can finally say we tried this one. We would have a real point of reference & if nothing else when we see the next specialist in December, we will have one complete attempt checked off. 

As per our plan, the patch went on again Sunday morning but unfortunately Day Two (and Three) are not data-worthy. Turns out the boy who seemed a little tired Sunday was actually suffering from a stomach virus of some sort. (Conveniently, right on the heels of his nasty cold.) He missed a bit of school that week & then, to mirror the pattern earlier in the month, passed the stomach sickness along to his mom.

Finally this past weekend everyone in our home was well again. But having an important family event to attend, we didn't feel it was a smart time for more experimentation yet.

Then came Monday. Apparently there was a challenging situation at school but I would not learn about it until Wednesday.

October 24, 2012
The Principal calls me. Upon learning that the teachers hadn't yet discussed "Monday" with me, whatever that meant, he wanted to make sure I was informed.

I was told that Hayden's Aide had been injured. Today is now three days past the incident, & having spoken to the Principal, teacher, & Aide at this point I can better summarize what happened.

Hayden was completing a worksheet, had a break, & was being prompted to return to finishing his work. He was having a difficult time with this transition & began to rock the chair. To prevent him from getting hurt they held the chair still as best they could, but in his frustration he grabbed hold of the desk instead.

What I do know is that he did manage to partially lift the desk & move it, & when it landed his Aide's thumb took the brunt of the hit. Not thinking much of it, she tried to shake it off but it began to grow more discolored, swollen, & painful as the day went on.

She went to the doctor the following day & they confirmed it was a contusion. Her thumb was wrapped to limit the movement & help it heal. She is otherwise OK, & they all seem to agree it was an accident & Hayden had no deliberate attempt to injure her. More importantly, thank goodness no one else was hurt.

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This kind of thing worries the ever-loving crap out of me. The mere thought of someone misunderstanding his behavior... people not knowing that each behavior is merely a communication... the mere thought that another child could have inadvertently been hurt... people not knowing that my kid is not aggressive... the mere thought that there could be anyone in his life who does not realize his kind, caring disposition... people not knowing what fragile x is & how this gene can scream SO much louder than my child ever really would.

So I put a lot of faith & hope in this medicine, & I put a lot of faith & hope in the clinical studies. Especially those who have qualified for, & are participating in the clinical trials. Those who are contributing towards the development of an appropriate fragile-x-indicated treatment that these kids SO deserve.

My son does not even realize that the wrap on his Aide's thumb has anything do with a desk that he was releasing his frustration out on. But we will of course try the patch again, & this effort will be continued...