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  • Our first visit – 2/28/13

    , Posted in: Uncategorized, Author: admin (March 12, 2013)

    Paul must have been as nervous. anxious, and excited as I was because, in spite of my driving directions, he got confused getting to the Verrazano Bridge. He was probably distracted, imaging all that could go wrong – or right.


    But we made it on time and waited only a few minutes before we were all led into a conference room to speak with Drs. LaPorta and Ted Brown, who is the Director of the IBR. I packed lunch for the three of us, snacks for Luke, books, puzzles, and, of course, Luke's ipad to make sure he was as comfortable as possible.


    The first thing we did was sign the multitude of consent forms. While Luke entertained himself with his ipad and – thankfully – headphones, Paul and I answered 2 questionaires about Luke's abilities,social skills, verbal skills, behaviors, etc. I should be used to this by now, quantifying my son's being. But it never gets any easier low-balling your only child's skills.


    Finally, the physical exam began. The urine sample was easy enough. And the blood pressure and weight was not a problem. But then the medical doctor, Dr Gonzalez, had to examine him with Luke's pants down, and the acting out began. It's one thing to have my 14 year old son shuffle out of his own bathroom with his pants and underpants at his ankles, bare-assed. But it is another thing entirely to have a stranger touch his genitals during an inspection. Luke protested loudly. You'd think this experience could have been made easier with pictures, or, at the very least, an explanation of what was going to come next. After all, this is a Fragile X clinic and these doctors know these children.


    The essential ECG was a total disaster. Paul had to force Luke's arms back as my son struggled against the electronic leads. He pulled them off and sweated so much from terrof, that the adhesive wouldn't stay. And having lubricated his body after the evening shower, the lotion was an additional barrier to the leads sticking. Why weren't we told about that? Why wasn't alcohol used to secure the leads?

    He struggled and screamed and won his battle against the ECG. Paul and I exchanged looks of fear: this can't be a deal-breaker, can it?


    (On the way home, I figured out that we have to desensitize him if we are ever going to get a successful cardiac baseline. So we found similar leads on Amazon and ordered them. Once they arrive, we'll make a game out of it in the hopes he will get used to them long enough for a 30-second reading.)


    Then came the blood draw. A papoose was brought in as an army of 5 struggled to get Luke (this kid is strong!) to get on his. Finally, with velcro straps flying, he was immobilized and his left arm was prepared for the draw. He looked at me with a pained look on his face: 'why are you letting them do this to me, mommy?' Believe me, my little man, if I could do it for you, all of it, I would…


    Once released, he shot up with a victorious "Ta-Da!" and that was that. He fared better than I did.


    Now we wait for the blood work results. To qualify, participants need a specific genetic marker this drug targets. And while I have no doubt that he has it, it's still a waiting game rife with anxiety. And so, again, we anxiously wait…..


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