We had an appointment this morning at our beloved Erie Shriner's Hospital for Children, which is in danger of closing forever.
If you remember we were seen in the Emergency Room because Reagan had a neck spasm.
They wanted me to follow up at Shriner's for assurance that all is well.....
It's not.
They found bony growths on C1 and C2, which is the very start of the spine, and closest to the brain stem. It's causing Reagan's stiffness and discomfort, and even the spasms. The one growth is very obvious, and it's the one in the worst position.
The doctor at the hospital basically told me that he's at a loss as to how to proceed. Surgery is risky, but so is leaving it alone.
He's taking Reagan's films to a neurosurgeon in Philadelphia. I guess he's "the best of the best" and will advise our doctor on how to best proceed. More than likely we will need to find and consult with a neurosurgeon of our own.
Prayers would be most appreciated. I am very stressed out right now between doctor appointments and therapy 4 times a week. Thanks for your continued support! Thanks for reading.
Saving Shriners - ErieTube Audio track - Erie, PA's Video Web site
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17 comments:
Lots of prayers for Reagan!
My nephew has kiari malformation. The base of his brain stem grew and compressed his spine, and had to be cut. It was difficult and scary for his parents, of course, but he came through it just fine, with no after-and even plays football now. He was diagnosed first through Shriners, and then sent to Pittsburgh Childrens'. He has to be re-checked every so often, but it has never grown back.
We'll definitely be praying!
Christa--you all are in my prayers.
Ellie's mommy
Thoughts and prayers for Reagan!! And you! (((( ))))
The "safari" and I will be praying.
Praying for your peace and Reagan's comfort.
I will be praying for you and Reagan.
I'm so sorry to hear about this! I'll be thinking of you guys!
Praying for sweet Reagan and your whole family. News like this must totally rock your world...but remember, there's a God who NEVER changes.
Christa - praying for you and your family as well as the wisdom of the doctors to find the best treatment.
Jody Paige
Reagan and Hope have been on my mind and in my prayers all day long. I can't stop thinking about them.
I pray that the neurosurgeon in Philly has some answers/a course of action for you.
I was serious about my offer before. If there is ANYthing you need, please don't hesitate to ask. I'm so serious.
I will pray for Reagan and your entire family during this difficult time.
I'm praying for Reagan and the entire family. Stay strong mama!
Goodness me i know you and your family can get through this, i think you are allowed to be a little stressed just now, just let it all out in one big scream.
sending lots of love x
Christa, prayers for you all, specially Reagan and the doctors and nurses.
Diane
a MOST mom
Christa, I am so sorry! Just wanted you to know I'll be praying for Reagan and for you not to worry but trust that God is in control.
HUGS,
Allison and the Lezonlings
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~Christa @ Quintooples