When the Unexpected is Expected.

Today Toby had his Myelo clinic appointment.  This is the day when we sit in a room for several hours (about 5 to be exact), and all of the doctors/therapists/specialists come through to discuss all the areas that are affected by Spina Bifida - Urology, Physical Medicine, Developmental Pediatrician, Neurosurgery, Orthopedic Surgery, Neuropsychologist, Occupational and Physical Therapist - not to mention our contact people for the companies that do adjustments on our wheelchairs and braces.

I went in today hopeful - not a lot of things to discuss in most areas.  A few questions about various things.  The biggest issue being Toby's back.  He has been wearing a night-time back bending brace for almost a year because of his severe scoliosis (early onset for kids with SB).  Over the past few months we've had issues with his brace leaving marks on his back - then we have to leave it off for a week or so, and try again.  We've had the brace adjusted once and it helped some.  I have been wondering if his back is getting worse.  About 1 1/2 years ago - the orthopedic surgeon and I had talked about the possibility of Toby needing titanium rods to straighten his back.  It's called VEPTR or vertical expandable prosthetic titanium rib. They attached from the ribs to the pelvic bones on both sides of the spine (out a little ways) and straighten the scoliosis.  They also have to be adjusted for growth - which is a surgery every 6 months until the child stops growing.

So, we saw most of the specialists today - got some more information about how Toby would need to have a motility study done before the MACE and Mitrofanoff surgery.  That was good to know, something we can talk to GI about.
Down to radiology for a back x-ray
Discussions with the nurse
Neuropsychologist stopped in
Adjustments to Toby's wheelchair
Developmental pediatrician

I went in to the day hopeful that his back had stayed the same - maybe it was just my imagination.  Maybe he's outgrown the brace and needs a new one.   Then orthopedic surgery comes in.  I saw it on his face -

Toby's back has a 55 degree curve - lying down...it's probably 80 or more sitting up. I remember Dr. K telling me before that once the scoliosis hits 50 degrees it starts to do permanent damage to the spine.  He needs surgery - soon...October.

Tears
Discussion
Questions
More questions

They want to do the surgery in October - trying to avoid major respiratory illness season.  Switching around other patients already on the surgery schedule.  It looks like the schedule is open the end of October - after the Columbus Marathon/Half-Marathon (sigh of relief).  At least Toby can be out there inspiring others in his Miracle Mile - Mile 7!

Have lots to do - clear the surgery with pulmonary, move up his MRI under GA of his brain and his spine to check cord tethering.  It's possible he needs it detethered before the rods are put in...can't stretch the spine out and still have it tethered down low - can cause problems.  Lots to consider.  Lots to pray about.

I knew it was coming - sort of expected it, but still held on to that hope that it was a year away.  I wonder if I knew it instinctively, which is why I put off scheduling the urology surgery.  It's still hard to hear the words when they actually come out of the mouth of the doctor...even when you are expecting the unexpected.  Grief hits hard - harder than I realize.  This is tough.  I don't like how the grief paralyzes me, don't feel like cooking dinner, playing with the kids, rotating seasonal clothing (I found those swim trunks and tank tops and realized the weather isn't going to get warm again - really should clean that stuff out).  Instead I want to cry, but need to hold it together.  We knew this was coming - just didn't expect it - the unexpected, yet it's expected (ironic).  I know God knew it was coming - it's no surprise to HIM.  I'm glad, glad He encompasses all time and knows the outcome in October. That He is with us every step of the way...but for now I'm going to go cry a little and grieve.  I have learned to do this, to adjust to the new normal.  Grief helps, but it's also hard.  I'll try to post more details later - especially as we begin to understand all the details.  Thanks for listening.