In just a few days time Lilah will have her 3rd MRI.
This MRI will be brain, thoracic, and lumbar. Last year the MRI showed that her spine was not tethered but that she has an additional lumbar vertebrae. The MRI was to show if she would need surgery on her spine.
Dr. Thompson (neurosurgeon) wants to repeat the spinal portion to verify the additional L6. He is concerned that there is something missing...as am I. See, Lilah drags her right foot a LOT when walking with her walker. She also isn't potty trained and for a child with her disabilities and at age 3...there is a concern that the spinal cord really is tethered. Tethered spinal cord could hinder her ability to feel and understand when she needs and has to use the potty. This would mean Lilah would need surgery on her spine to UN-tether the cord. ( yes she could be delayed in potty training due to her lack of understanding and more but tethering could make her incontinent)
Dr. Moretz( Neurologist) wants the brain portion repeated to verify that the issues with Lilah's grey matter have not increased. If you remember there was finding that Lilah has a small corpus callosum and that her grey matter didn't form correctly. This could mean that somewhere Lilah had brain damage or that her brain just didn't develop like it "should" have.
Because Lilah has steadily improved we haven't been too concerned, BUT Moretz feels that yearly MRI's on the brain are imperative due to the brain and eyes working so closely together and because of Lilah's significant delays.
Here are my concerns and requests for prayer and discernment:
* If Lilah's cord is tethered she will require surgery on her spine to UN-tether it
* I have heard many different views on Dr. Thompson's surgery practices, things he misses, etc
* If she needs surgery there is a chance that her walking could be halted...forever. Risks to spinal injury
* If the MRI shows that Lilah has brain has damage...questions arise as to where and when it happened. In utero? At birth? Did she not get proper oxygen at birth? Was there something that should have been reported? What about when she came out and had trouble breathing? Did that cause her damage?
I am laying it all at God's feet. I do not know the plans HE has for Lilah. I must trust Him to know what the path is. I am her Mama and I am fearful of the unknowns for her. I want the best for her. If she must have surgery on her spine I want the BEST person operating on her. I will go to the ends of the earth to find the person she is meant to have operate on her. If this is just another test then I will do my ultimate best to trust in His leading me here to teach me something.
I am requesting prayer. I believe that prayer either changes things, the circumstance or our perspective on it.
I keep begging God to heal her spine, her legs, her brain, her eyes, but I also know that HE has led us to this place to help us all grow. I pray that Lilah will not need surgery, but if she does...that the right hands will operate on her and she will NOT have complications. I pray that she will be able to walk and she will not have injury that will cause her walking to cease forever. I pray that the brain MRI shows that she does not have damage and that there is no growth or increase problems in the ventricles.
I know that all of this must lay in HIS hands. I must trust that all will work out. I will keep praying and believing....and still being human.
Thank you to those who can help me understand all the medical ins and outs, who will guide me correctly, will pray for us, who will hold my hand as I hit weak moments and cry hysterically. I need you all. I appreciate you.
Much Love and Many thanks,