First I just want to thank everyone for their thoughts, prayers, texts and phone calls last week. The love and support is such a blessing in this very confusing time.
Last week Abe and I met with Connor’s neurologist to discuss the findings of the MRI he had in February.
Dr. Zach told us that after speaking with a neuroradiologist they believe the Chiari Malformation is what’s causing Connor’s symptoms. (To refresh your memory, we took him to the neurologist late last year because he falls a lot, is tired often, has no response to reflex test, hypotonia, and weak muscles overall but especially in his hands. And of course all of the behavioral challenges we have with Connor. The neurologist ordered a lot of tests to be done in the beginning of this year. Other than the MRI, everything has been normal. We are still waiting for the results of the genetic tests). She pulled up Connors MRI to show us the cerebellum descending down where it shouldn’t and also showed us that the fourth ventricles in his brain are very large. She ordered another MRI (this time STAT) that would look at the way the CSF flows in his brain. The neurologist and neuroradiologist believe it’s possible Connor is having some intermittent blockage of CSF which is causing his symptoms and the large ventricles.The MRI was done the very next day and we had the results by Saturday.
Patiently waiting to be called back for another MRI. Connor loves working in his Lego Batman sticker book with Abe!
A little Angry Birds to pass the time!
Just getting out of the MRI. Still sleeping. We have learned the longer he sleeps after anesthesia the better he does. This time the nurse had us wake him up a little sooner than we should have. He was a grumpy boy!
Snuggles from Daddy!
The flow study looked normal. We can’t say he never has abnormal flow, it just means at the time of the scan the CSF seemed to be flowing properly.
Next week we will meet with the neurosurgeon to see what she suggests for Connor.
Some days are really hard and I spend a lot of time researching pediatric chiari malformation just trying to understand this diagnosis better. But most days I am just thankful for the people God has put into our lives. We are blessed to know amazing physicians who can help direct us to the right people who will be able to help Connor.
I do find comfort in trusting God and knowing that He already has a plan for Connor. He already knows the outcome. I trust that He will guide us as we make these decisions for our son.
