Ahh, the joys and trials of Myelo Clinic days! Things never go quite as I expect and I always come away with a deluge of information. I love seeing so many doctors in one day but Mason is less than thrilled. To keep things interesting I made a rookie new mom mistake that I haven’t made since Makayla was a baby. I grabbed the small diaper bag off the hook instead of the big one we used last week when Mason had surgery and showed up for clinic with exactly ZERO diapers. For the child who needs changed at least every 30 minutes. Mmmhmmm. At least we were at Children’s Hospital where diapers are always in stock and on hand so they just gave us a stack for the day.
Our day began early, leaving the house at 6am to make it there in time for Mason’s rapid MRI of his brain. Makayla came along today for two reasons – one, she wanted to go in the MRI with Mason so he wouldn’t be alone (I’m pregnant so I can not go in), two, she wanted to learn more about what Myelo Clinic is like, meet the doctors, ask questions. It turned out she was not allowed to go with Mason during his MRI because she is under age 18 – dumb, but true. So we listened to the poor guy cry while they strapped him down and did all his pictures. We also got a renal ultrasound of Mason’s kidneys and bladder done today about halfway through our visit. The urologist looked at the scans and said everything looks fine so we don’t need to increase our cathing schedule or add in bladder medications. When asked by Makayla about what the medications do this sweet doctor launched into a 15 minute mini-lesson complete with diagrams drawn on the paper of the bed. Mason’s circumcision had also reattached to the penis (penile adhesions) so the urologist pulled on that and unattached it again. Thankfully he didn’t feel it at all – a small perk to nerve damage.
Neurosurgery looked at Mason’s MRI and everything looks wonderful. His newest shunt is working as it should for now. Of course, it’s only 10 days old. Things could change any time. The doctor is scheduling a full brain and spinal MRI for sometime in the next month or so to get an official baseline on Mason’s body. He will have to be put to sleep with anesthesia for that process, which will take up to 2 hours.
The biggest news to us today was from Physical Therapy and Physical Medicine. They focus on mobility and after seeing what Mason can do and learning what he is trying to do at home (climb stairs and pull up to stand at the couch) they decided it is time to get some braces for Mason. Without the bracing there is no way Mason will ever stand, he simply does not have the nerve and muscle function to even maintain kneeling beside the couch. His functional level is T12, that means that the nerves and muscles below the 12th Thoracic vertebra are not working.
So today that handed us a prescription for HKAFO’s. That stands for Hip Knee Ankle Foot Orthotics. I’ve not been able to find too many nice pictures of these online to share so I’ll point you to a post of another young man with Spina Bifida, Caleb, whose progress we love to watch in his mom’s posts. She has a picture at the top of this post of really short AFO and then tall HKAFO’s with full leg braces and a band that goes around the pelvis/waist. These taller braces are what Mason is getting. He goes in 2 weeks to be measured and casted then the orthotist will get to work making them.
The idea for Mason is that these will enable him to stand and play at a new height, one he is trying to reach but physically cannot. His will have locks at all joints to keep from bending because he can’t actually use them that way. The Physical Medicine doctor does not believe Mason will be content to use these long-term because they will limit him from actually moving places and chasing his siblings, but they will be good for his bones and body (weight bearing = strengthening) as well as giving him some developmental perks.
Those are the big things from today’s visit and so I’m going to get off this computer and go help my children, who just came in from outside and are in desperate need of hot chocolate they’re telling me.