- Joined
- Jul 14, 2012
- Messages
- 71
I'm in and I'm out I know. So much has been happening and I'm finally able to update more accurately. I believe I mentioned the Ehlers-Danlos diagnosis previously. We've come to learn that is why my son has struggled to find remission. We are currently on 16 days with no emergency hospital stay but 
he is only 5 days out of a planned 2 wk clinic stay. It was a stay to learn as much as we could about what is going on as he's been struggling so much.
The end result. He was diagnosed , through an upright MRI, with a Chiari malformation. We're being scheduled to meet with a neurosurgeon in the next two weeks. I'm still reading the information we were given explaining this condition. Its been a year of learning and it seems I've much more to learn still.
A year ago we were at Cleveland Clinic being told either surgery or Remicade were the only choices. My prayer is a year from now that I can post he is finally past all of these struggles.
Please know that every night I say a prayer for all of you and your children. You're never far from my thoughts even if I rarely post.
he is only 5 days out of a planned 2 wk clinic stay. It was a stay to learn as much as we could about what is going on as he's been struggling so much.The end result. He was diagnosed , through an upright MRI, with a Chiari malformation. We're being scheduled to meet with a neurosurgeon in the next two weeks. I'm still reading the information we were given explaining this condition. Its been a year of learning and it seems I've much more to learn still.
A year ago we were at Cleveland Clinic being told either surgery or Remicade were the only choices. My prayer is a year from now that I can post he is finally past all of these struggles.
Please know that every night I say a prayer for all of you and your children. You're never far from my thoughts even if I rarely post.
