2016 isn't Going to Be Boring - Drat!

Sometimes I daydream of nice, boring years with no medical hoopla.  2016 is NOT going to be boring unfortunately.  We had Myelo clinic on Friday and saw a lot of Mason's specialists.  We ended the day with renal ultrasound (to check kidneys and bladder) and spinal x-rays (to check the curvature of Mason's spine).

Many things are going well. His shunt is working fine, he's learning fine, and from what I can tell reading the kidney/bladder ultrasound those are ok too (we will hear from the doctor this week if anything is wrong).
Several things are not ideal.

1. Mason does need surgery on his foot. Again. They are scheduling a ways out (couple of months). This surgery will be more aggressive, cutting clear to the bone on his heel tendon area. When surgery happens Mason will be in a short leg cast for 6 weeks. Hopefully this time around he won't break any bones because of it but it is possible because he still has osteoporosis.

2. Mason needs physical therapy to work on core strength. We expected this because we have been seeing some balance related issues that are keeping him from being able to learn skills like putting on and taking off a shirt or coat.  Mason can't sit and balance and do those things that involve moving his upper body around dynamically. Even drinking from a cup is difficult if he's not in a seat with a back or his wheelchair because he'll tip the cup up, lean his head back, and fall over. After a few months of PT we'll see how he is doing and consider adding in occupational therapy to help him with those fine motor tasks if he needs guidance breaking tasks down into a sequence while also keeping his balance. We'll start PT in February. I'm guessing once a week, with daily practice at home. I've also already gotten some ideas from occupational therapy to begin doing at home on our own while he gets a few months of physical therapy in.

3. Mason has his double eye surgery to do, which I mentioned in my last post. This will probably be the first surgery to happen.

4. His scoliosis is worse, which is probably contributing to the balance issues. I've not spoken with the orthopedic surgeon about this yet (who is doing his foot surgery) because we didn't get the x-ray until the end of our day of appointments. The surgeon's office should call us this week to talk about the x-rays and where we go from here. However I've read the test results and Mason went from a curvature below 10 degrees (not scoliosis) to one around 27 degrees in just 6 months. Treatments vary (bracing (probably where he would start because his curve is below 50 degrees), surgery to put rods in spine or to fuse vertebrae, or more). So possible surgery on the horizon here.

Unfortunately the scoliosis could also be a symptom of tethered spinal cord so we need to talk with neurology in conjunction with ortho.  When you look at all 3 symptoms together (right foot contracture, balance degeneration which could be nerve damage, and a quickly increasing scoliosis) it points to Mason's spinal cord being tethered again.  This is bad.  We need a doctor to order a sedated MRI to check things and we need a doctor who will listen to the whole picture, not just brush us off. One reason doctors sometimes brush you off with this issue is ALL people with Spina Bifida who had a back closure surgery have a tethered spinal cord.  Basically, the spinal cord gets stuck in the scar tissue.  So that is going to show on the MRI.  The real issue is that a neurosurgeon has to weigh the issues you are seeing physically and decide if all of them together mean the tethered spinal cord is being pulled tight and causing those issues or if the issues are unrelated. They are cautious because it is a major surgery (which we've done once before!) that risks causing more damage to Mason's nerves. We'll just have to see where this goes.

So there you have it, a perfect example of what we mean when we say Mason is medically complicated. He's precious and funny and worth every bit of the craziness. It is certainly never boring around here.

We know none of this is a surprise to God.  He knows what needs done, what is going to happen, and we're praying that He'll help us through it as we go.