Maryelle was sedated for 6+ hours today so that more testing could be done. She handled the whole situation quite well considering how traumatically she reacts to anything medical.
Maryelle had thick fluid in her ears so now is the owner of a set of ear tubes. Unfortunately, the syndrome has effected the inner ear and she has moderate to severe hearing loss (even with tubes) and will need hearing aids and much hearing impairment support. Because the inner ear is deformed, it affects her vestibular system and will cause her to always struggle with balance. Not the news we were hoping for.
Her nasal cavity is normal which is good. (This can also be a defect associated with the syndrome.)
We are hoping to find out the spinal and brain MRI results tomorrow.
I'll admit that it's very difficult to process information about your child that will be a life long challenge. It feels like so much for our little one. But with each issue, it's becoming more apparent the miracle God has done and is doing in giving our sweet girl a hope and a future. In China, her future was deafness, blindness and inability to learn to speak. We are thankful she is our daughter.
(This is her post-sedation asking "where's Hannah?")
- - December 30 - -
We got the MRI reports this afternoon from the neurologist and thankfully nothing showed up that we didn't already know! Well other than M has only 11 ribs rather than 12!
The MRIs confirmed the genetic syndrome of CHARGE and showed that she has malformation of both inner ears which is the cause of the hearing loss. And her optic nerve is smaller in the left eye because of the defective eye size and Coloboma of the eye.
But no spots of brain damage or tethered spinal cord!!!
SO thankful to get this info today rather than waiting til Monday!
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