Wednesday, December 19, 2012

And so we wait...

Yesterday we had our follow up Neurosurgery appointment with the local Pediatric Neurosurgeon at UNMH. We had initially pushed to get referral from our Neurologist to see him (surgeon) aftery they discovered the Syrinx on Micah's MRI. As you recall, Micah went in for his 2 year follow up MRI in early November, during the scan the technician saw the beginning of a Syrinx in his spine which goes the entire length of the spine. We had done all the legwork to get this referral into his Neurosurgeon done anyways, and we wanted to know his opinion on how the Syrinx may affect Micah's eligibility for SDR (Selective Dorsal Rhizotomy).

We had a LOT of time to sit there and stir and ponder about what the consult might bring. I always set myself up to be blindsided by a sledgehammer of bad news, since--let's face it--most things in life just can't be simple or "normal". When it's your kid that you see struggle in his body everyday the anxiety is heightened. I just cannot handle anymore bad news. At least that's how it feels. So we sit, and wait. The room was as hot as a sauna and we waited about 1hr and 15 minutes past our initial appointment time trying to entertain and wrangle two very warm, hyper, bored young children. Cameron and I talked and I expressed my biggest worry was that the doctor would say that Micah's syrinx would in fact intefere with the SDR. I want nothing more than to give my son the gift of "new legs" that the procedure could bring. It's my greatest hope.

So finally the doctor came in with his NP along side. We chatted a bit, talked about his Syrinx etc. They asked what I knew about them, and how Micah doesn't exhibit symptoms etc. He had looked at the MRI images and said that Micah in fact does not have a Chiari malformation, tethered cord, or tumor so that would deem his syrinx to be "idiopathic", meaning it's just there and they don't know why. He described the syrinx as most likely to be "benign" meaning it should have no negative affect on him, and can likely go away. In his words, syrinx are something they know "incredibly little about." He recommends another MRI with contrast in a year to follow up.

So on to the talk about the SDR. SDR has come a long way in recent years and has proven to be a very affective approach to solving muscle spasticity in spastic kids. There are other options that require medications or botox but are less affective and usually have stronger side effects. The sooner the SDR is done the better the probability of that person having a larger margin of improvement.  Research shows that when done between the ages of 2-7 many kids like Micah can walk without an assistive device (walker, crutches etc). It can also minimize the need for future surgeries that kids with Micah's type of CP require to have tendons and muscles lengthened. My hope was to get it done ASAP--to give him his best chance.

The surgeon seemed to be impartial on the SDR itself however he did say that it wouldn't surprise him if the folks at St Louis would NOT want to perform the procedure on Micah. Poo. He says that it wouldn't affect the surgery itself but that there is a slight chance that the Syrinx may affect Micah negatively in the future, causing muscle weakness. He thinks that having a permanent procedure on Micah's nerves could potentially make Micah too weak if the Syrinx did have an affect. It made sense. I guess. I couldn't help but be super bummed. Disappointed. Heart broken. All my dreams for Micah seemingly dashed in the dust. I was hoping this year would be a new year for him. I wanted him to have those new legs. Dammit!

So after some sulking, a little bit of crying and anger...feelings of helplessness... I made a decision. The way I see it, the SDR is a risk regardless. Micah is still very young (heck, he's not even supposed to be 2 years old yet since his due date was Jan 5th). We'll hold off on the SDR, for now, but I have a strong feeling he WILL have it someday, a few years from now. Until then we will watch the Syrinx and pray.  To me, I don't want to give up on something so beneficial as the SDR for my son. There is greater than a 90% chance that this Syrinx will NEVER be an issue, and how could I just give up on giving Micah his best chance for such a slight risk. It is a risk, and it does concern me and that is why I have decided to let some more time go by, we aren't in an urgent rush. Many kids don't get SDR until they are 4 or older (many seem to be around 6-7yrs old). And although the sooner they get it done the better, I think it is a safe option to wait a few more years and not rush it. What I don't want to happen is pass on the SDR altogether and have 20, 30, 40 years go by where the Syrinx does nothing and all along my son could have had a more comfortable and independently mobile life.

So we wait on the surgery. And we pray for healing and answers. Fortunately I can be grateful that hippotherapy has done SO much for Micah is such a short time. We will see a lot of progress in him as time goes on, all thanks to horses and his therapists (and God who created both). It can be so incredibly frustrating and heartbreaking to see your kid struggle. I watch Micah struggle in his body daily. Fortunately Micah is happy kid considering his situation. My mom and I laughed yesterday as I described him perfectly:  high maintanence yet easy to please. Yes, he's about as easy to please as he is to piss off but I love him and he loves a lot of things. He is such a joy and I am grateful for the abilities he does have. He could be so much worse off than he is. But as every parent knows, especially those with special needs---you would do anything to give your child their best chance. It's not that we want to give them "normal", because really what is normal? But we do want to give them easy. So if your kid has "easy" in any one thing, thank God for that.