Medical Moments

Mitchell got reassigned to a new early intervention specialist from our county. She visited Tuesday for the first time and we like her. (Okay, we asked to get someone new, but only because our first one’s attendance record was spotty.)

We got the print out of Mitchell’s MRI results in advance of the next neurology appointment (3/23). We definitely have new questions, however were struck by white matter/myelination now being appropriate for his age. This has been our biggest area of prayer since the last MRI. Hooray! Now that does beg the question if one of his biggest issues was lack of white matter and today he has more, then what is making things in his brain still not work right? Good question. Yet, we are encouraged that a specific prayer has been answered. It is reminiscent of the comparison between MRI #1 and #2. On #1 there was a small insult on the pons area of the brain. We prayed for that to be remedied and it has not appeared on MRI #2 or this #3.

Even more follow up came today when the neurologist's assistant called with a report on additional tests done on the Mitchell's muscle sample frozen at Children's since the biopsy done last June. There are 3 components of the test and parts 2, 3 & 4 are normal, while the results on part 1 is inconclusive forcing the lab/doctors to claim the result as abnormal. The nurse wanted to prepare us that the doctor will be recommending another muscle biopsy to be done and instead of having it be done here in Cincinnati, he'll prefer we travel to Cleveland to have Rainbow Babies/the Cleveland Clinic administer the procedure and tests. Beats a spinal tap, although if that's what he says Mitchell needs...we'd do that too.

A wheelchair was picked out for Mitchell – the Zippie ts. It takes 3 weeks just to get a quote turned around. The plan is to get the chair approved through insurance as well as a bath sitter to help the bathing process as he grows. We’re told it takes 4-6 months for the chair to arrive once the order is placed.

Mitchell’s next ortho appointment is April 9 where we'll find out more about his scoliosis and his hip being 30% out of joint.

Mitchell was accepted into the Pearlman Center after all. He’s on a waiting list hoping for a late summer or fall session starting point. We had such a low expectation on whether Mitchell was a candidate for the program, we are all the more surprised that they would advance him to the toddler class, rather than the early intervention class. The more we think about it, the more we are in favor of consolidating therapies into a 2x/week, half days schedule.

Mitchell has continued to attend the Conductive Learning Center once a week for a 3 hour session. For the past month or so he’s done remarkably well, barely crying and initiating some movement on his own.

If you read closely, I'd say there are some "ups" in this post, along with the usual uncertainty. We are looking forward to celebrating Mitchie's birthday this Sunday!