Surgery

After an incredibly long day of travel (including one 9 hour layover at JFK...and yes, I think we could have walked faster than it took to fly), we made it successfully to Maryland. That was almost two weeks ago in which time we've had at least one doctor or therapy appointment every day. He has been seen by PT, OT, Orthotics (new braces coming!!), Urology complete with a urodynamic study, MRI, Neurosurgery, 4 hour spina bifida clinic appointment, had a 3 hour speech eval, a 4 hour neuropsychology exam and who knows what more. Jonas has been doing so well putting up with all of it.

After evaluating the results from a crazy bladder test, meeting with specialists at the Spina Bifida Clinic and having an MRI, the neurosurgeon has decided that Jonas needs to have a spinal cord de-tethering surgery. Jonas is scheduled for surgery this coming Thursday, August 25th.

This is not at all what we pictured for our summer but we are so glad to be here with doctors we trust and have experience with this kind of situation. We are also so grateful to our friends who are letting us stay with them. I hope we don't drive them too crazy but we do have a great time together and they help us enjoy our time right now.

Dr. Jallo would like Jonas to remain in the area for about 3 weeks after surgery to make sure he is fully healed before we return to England, so Devin will be taking Clara back to start school and I will be staying here with Jonas and Nell. I am sad we have to "divide and conquer" but it is the best overall solution even though selfishly I want my family to stay together.

From the look on Jonas's face in the picture above, he isn't the least bit concerned! This was his reaction to the adorable Mickey Mouse fruit bouquet a good friend sent. My goal is to be as brave as my little boy is this week.