My 12 yr old step son has Neurofibromatosis. His mother has been monitoring his scoliosis but not well. She had tried a brace but only for a few days and then did not have him wear it after he complained it was uncomfortable. She told us a year ago that he may need surgery but not much more than that.
My husband and I now have custody and in the last 6 months the curvature went from 42 degree's to 64 degree's.
We took him in to see the Otho a few days ago and he took one look at the Xrays and told us he will need surgery that he cannot help up any furthar and gave us a referral to MaryBridge Childrens Hosp. We now have to wait for MaryBridge to write us a letter and tell us when he can be seen.
We have very little information and we are terrified. I have never used one of these forums and am not really sure how they work but at this point I don't know what else to do.
I guess im just looking for some sort of support web where i can learn more about what is in store for my little boy.
I kinda knew we my husband and I would be the ones to handle things when they got bad but I never thought it would happen so soon.
Can anyone be of assistance or support.. can anyone advise us of resources in washington state or anywhere for that matter.
What is in store for us and how can we help our son through this.
My husband and I now have custody and in the last 6 months the curvature went from 42 degree's to 64 degree's.
We took him in to see the Otho a few days ago and he took one look at the Xrays and told us he will need surgery that he cannot help up any furthar and gave us a referral to MaryBridge Childrens Hosp. We now have to wait for MaryBridge to write us a letter and tell us when he can be seen.
We have very little information and we are terrified. I have never used one of these forums and am not really sure how they work but at this point I don't know what else to do.
I guess im just looking for some sort of support web where i can learn more about what is in store for my little boy.
I kinda knew we my husband and I would be the ones to handle things when they got bad but I never thought it would happen so soon.
Can anyone be of assistance or support.. can anyone advise us of resources in washington state or anywhere for that matter.
What is in store for us and how can we help our son through this.
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