Spinal Surgery Update

• Warning somewhat graphic image included in post

Elliot is 4 days post op from his laminectomy and tethered cord release procedure. They cut into my sweet boy, shaved down some of his spinal bones, and released his tethered cord.

When I say he never ceases to amaze me, I truly mean it. He hasn't skipped a beat. He is the epitome of resiliency. He is already nearly back to his typical functioning. He is happy, playful, and on the move.

Friday was a long and stressful day for all of us. Although this wasn't the first time Elliot has been under general anesthesia, I felt like this was the first time he was aware of what was going on around him which made if feel harder for me.

I'll never know if this was the absolute right decision for Elliot- on one hand we had clear imaging showing he was experiencing spinal atrophy related to his syrinxes, but on the other we had no concrete observable effects of the atrophy. We chose surgery because of the risk of neurological deficits if the syrinxes didn't resolve or worsened, deficits that could end up being permanent. Both surgery and the syrinxes came with a risk for these deficits, however, the surgical risk was lower.

We took the tegaderm bandage off Elliot's back yesterday for his first post surgery shower. I cried after seeing his incision. Not because it looked infected or grotesque, in fact, it is healing very well thus far. I cried because the reality of his life hit me. He's not even 2 years old and he already has four scars on his torso and a scar on his hand. All remnants of decisions made for him.

My mom brain worries that he'll resent us one day, blame us for his condition and everything it took from him. I try to reflect on what I'll say to him one day when he understands more of what is happening to him. I hope that I'll have the right words, and that he'll understand that every decision we've made has been one we tried to make in his best interests.

On the positive side, I checked in on his position on the waiver lists today, and it looks like his number will be called sometime in December for the HCB waiver if it continues to move at the same pace. We started at #2084 at the end of August and we are currently at #1032 on the HCB waiver waitlist. The Michelle P. Waiver is moving slower, and our # is much higher on the waitlist, but we expected that it would be a longer process. Additionally, KEIS (First Steps) found us a speech therapist and we should be starting soon!

Also, my little man got a hair cut today! His KY waterfall is coming in nice, haha!