“She Knows They Will Shave Some Of Her Head And Asked If I Would Too (Of Course I Will).”
It’s taken me a few days to process and post but here’s an UPDATE from MRI results:
The syrinx in Paisley’s spine has quadrupled in size, therefore it is putting alot of pressure on her spinal cord and is pushing it outward. The size the syrinx has grown to in the amount of time it has is a very severe case. There are 2 other smaller syrinx that have created behind it also. They are worried that she won’t get the proper amount of fluid down her spine which would cause paralysis amongst many other issues that could come about within months.
So we have made the decision to go through with the cervical spine decompression surgery. That involves taking a portion of the back of the skull out and removing her C1 and C2 vertebrate to relieve the pressure.
We did get accepted into UVA for the operation by one of the best doctors on the east coast.
It will be a hard road to recovery but this is the best option we have to give her a normal as can be life in the future. She understands everything and is in great spirits going into this. She knows they will shave some of her head and asked if i would too (of course i will). We have both done our hair and nails blue leading up to it because that’s what Pie wanted too. She is so positive about it all and is ready to feel better and go to school. It is Amazing the strength and smarts of this 4 year old little girl and what she understands and accepts is going to happen to her.
I ask that you please say a prayer for our baby girl and that we have a great recovery to come.
Support Epilepsy, Chiari Malformation and Syringomyelia as they are invisible and have no cure. You never know what people are fighting on the inside so be kind and understanding to everyone.