On Thursday, July 22, 2 days before we left for Chicago, Trip had a swallow study done at Arkansas Children's Hospital to determine if there was any dysphagia involved with his JDM. Our speech pathologist was wonderful with Trip and he had a blast blowing bubbles, drinking "chocolate milk" and eating a Bareo- an Oreo with barium laced filling. They observed 1 mis-timing of laryngeal closure, 1 incident of midlevel penetration, and multiple normal swallows. There was no aspiration or pharyngeal residue with any swallows. According to the therapist and radiologist this was very good and they didn't make any recommendations or suggest any change of diet at this time. They said the 2 findings could be random incidents that are even found in perfectly healthy individuals. Then, on Saturday while we were on the road to Chicago I got a call from Dr. Pachman just touching base with us before his procedures on Monday. I asked her if she had had a chance to review the results of his swallow study (they were immediately faxed to her from ACH) and she hadn't. I told her that the findings were very good and explained what was observed. She immediately said, "He should have zero (midlevel penetrations or mis-timings)! In a JDM patient we have to assume that these findings mean something. All the better that we're moving forward aggressively." She means business and doesn't mess around with this disease. I like that!
6 days ago