Even though we got to Columbus on Sunday morning, today was the first day of treatment for Baby John in the Baby CHAMP study. On Monday we had parent training with our therapist, Angela, and then John’s first assessment at OSU. They recorded him with electrodes on both arms to measure how he moved his arms and how far he could reach. They also recorded him performing different activities to test for motor skills, cognition, behavior and social skills. Tuesday and Wednesday were for collecting cortisol samples to measure our stress levels.
Since John is in the splint group of the clinical trial, he wears a splint on his right arm for the 3 hours of therapist led therapy every day. Today Angela made the splint and fit it to John’s arm and since he hated having it on, most of the session was spent getting him acclimated to wearing the splint so that he can hopefully tolerate it better as the days and weeks go on. Angela also spent a lot of time building a rapport with Baby John today; initially he did not want to be touched or manipulated by her at all, but by the end of the session, he seemed to warm up a little bit.
Our parent homework tonight was to try to get John used to touching with and being touched on his left hand. Typically, his left arm and hand are very sensitive to touch and he recoils when you engage with his left side. To counteract this, our activity for this afternoon was to grab his hand and have him touch the page of a book before we turn the page or touch a piece of finger food to his left hand before we put it in his mouth and then praise him immediately afterwards. In the beginning, this was hard for him and he would whimper or complain every time, but after a while he seemed to get more used to having us engage his left hand. At the end of our 45-minute homework session, my husband put a puff in John’s left hand and assisted him in bringing it to his mouth, at which point he took a bite out of the puff that his left hand was still holding. This was a really big deal because normally he will ignore any food that we place in or on top of his left hand!
Angela also talked to us about calling his left hand “lefty” to help with verbal cues and taught us how to properly praise him after a “lefty touch” (do it immediately after the action and be specific with your language – i.e. “good job using lefty”).
John's Journey 