Johnathan Update #3

Johnathan was a trooper yesterday as he got his MRI. He couldn't eat or drink anything after breakfast, and although he reminded us most of the morning that he was hungry and "sirsty," he really hung in there on the drive to Dell Children's Hospital in Austin and the long wait. He had to be sedated for the MRI, and he had trouble getting down the yucky tasting oral medication. When he spit it up, the nurse gave him IV medication instead. All told, we spent 3 1/2 hours at the radiation clinic. When it was all done, Johnathan was very groggy and wobbly, but he eagerly slurped down 3 juice boxes and a bag of goldfish before he was released!

After the MRI, we went straight to the neurologist's office to discuss the results. The MRI confirmed what the doctor thought, and after a detailed explanantion of prenatal brain development, the doctor explained that as Johnathan's brain was developing before birth, a small "gap" or cleft occured on the left side in the area that affects his gross motor function (the technical term for this is schizencephaly). The malformation is small and appears to be localized to his motor development. The condition does fall under the umbrella term of cerebral palsy, but the doctor characterized it as mild. All this is good news, because the doctor doesn't expect that it should impact his speech or cognitive development, vision, or any other system other than the weakness he's experiencing on the right side of his body. And because he's young, the brain is still developing, and with intervention, we can hopefully minimize the impact it will have on his motor skills as he grows.


The next step is to meet with a whole team of specialists on November 18th. They will xray his hip to check for issues there and check everthing else out. We'll get to meet with the pediatric orthopedic specialist, a brace specialist, physical therapist, and a social worker who will help with accessing services Johnathan will need. Together we'll make a plan for what to do next. That may include bracing, physical therapy, and a possible heel cord lengthening surgery to get his heel to a normal range of motion. So our next update will come after that appointment.


Thank you so much to everyone who's prayed for Johnathan. A big thanks to Mrs. Diana and Mr. Jimmy, too, who took care of Naomi yesterday so she could have fun being a country girl, wearing boots and feeding horses and cows instead of sitting in a doctor's office with us!


Johnathan spent the night in our room so we could keep and eye on him as the medicine wore off. Today he's back to himself and had fun with Naomi on her field trip to the Children's Museum and having a little picnic in the park!