What a day. For anyone that is clueless at this point about the stuff going on with my youngest daughter, you can get caught up below. The posts are short.
So from the get go, I’ve shared that something was wrong, but I was vague on the details. This in part was due to holding on to that last shred of privacy that I talked about in my first post but mostly, because I–we (my wife April and I) wanted to talk to the neurosurgeon and hear it from them–what THEY thought when they saw the MRI. Too often a doctor has told us one thing but then another with slightly more (or different) experience says, “no, that’s not it at all.” Today was the day. After a weekend of research, as soon as we saw the image of Riley’s MRI for ourselves, we knew what we were in for.
Riley has what’s called Chiari 1 Malformation.
This is when there isn’t enough room in the back of the skull and the cerebellum is pushed down into/against the brain stem and out of the skull into the spinal chord. Sometimes this is treated by treating the symptoms while others require surgery.
Riley’s will require surgery. To sum the procedure up as best as I can, they basically remove a very small section of the skull and spine (c1) to make room. Riley’s case is still a little more than what the norm is though and they will need to take a portion of her neck muscle to create a pouch/patch.
There was A LOT of information given to us. Naturally, there are risks involved and lots of scenarios that were covered. However, she (the doctor) seemed very optimistic that Riley, given her age especially, would do well and be able to live a normal, happy, healthy life; seemingly without limitation–including sports and physical activity. The doc doesn’t see any kind of damage that might have been caused or learning disabilities bubbling up because of this either.
From here, we have two more tests that they want Riley to go through and a regular wellness checkup to make sure all the ducks are in a row before the surgery.
Thank you all for your thoughts and prayers and well wishes. We could definitely feel all the love today. It gave us the strength to stay calm, clear-headed, and dry-eyed as we spoke to the doctor about the very serious situation affecting the well-being of my baby girl.
Your continued support is greatly appreciated!