We have scheduled another sedated MRI for Graham on October 10. We expect him to have surgery on his spine in October or November.
I had a nice long chat on the phone with the neurosurgeon about the timing of surgery. She said if you talk to 12 neurosurgeons, 6 would say go ahead and do the surgery and 6 would say wait until he presents symptoms. Apparently this condition is rarely found in babies simply because most babies don't have MRIs. Babies may have stenosis at the top of the spine but it would not be detected until they are older or until some type of trauma occurs to the spine.
The risk of having surgery while he is still under age 2 is that he may develop instability in his neck post-surgery. I am not real sure what that would mean... more surgery? therapy? The risk of waiting until he presents symptoms, meaning loss of use of arms and legs to some degree, is that he may not recover fully from said symptoms after surgery. The neurosurgeon is also not real sure whether Graham is symptomatic or not. He seems to have great use of arms and legs, but is very behind developmentally with his neck and core body. This may or may not be related to the stenosis. Also... I haven't gotten any clear answers on whether Graham's nystagmus (bouncy eyes) is caused by the stenosis and whether or not the nystagmus could be causing damage to his vision... which would be a reason to have surgery soon.
The neurosurgeon said that if it was her kid she would go ahead and have the surgery because she would worry about the kid experiencing some trauma to the neck as he got older and started walking and such. I guess that means Graham is vulnerable to trauma in his current condition, which has not been made real clear to us previously.
Matt and I continue to pray that the Lord would heal Graham and if He chooses not to that He would protect him and give us wisdom regarding surgery. Delaying surgery could mean waiting on the Lord to heal him. I know that sometimes we can move too quickly, not allowing the Lord to work. Like when Abraham slept with Hagar to produce the child that God had promised instead of waiting on the Lord to bless Sara with a child as He had planned. But I also know that the Lord has blessed us richly with great hospitals and doctors and that He works through them everyday to answer prayers for the sick.
I don't want to be like the guy drowning in the ocean who prays for the Lord to rescue him and a when a boat passes by he refuses to get on it because he says the Lord will save him. Well the Lord sent the boat to save him! I don't want to wait on the Lord to heal Graham when He is saying, I have given you the surgeon at Duke to heal Him, what are you waiting for! I'll be honest I get a little teary when I think about Graham having to have another surgery. Oh, Lord we need you to guide us!
