Let me catch you up. It all started with Lily's "Pirate cry". No this is not a clinical term. This is just how we first noticed Lily had right sided facial weakness because she only closes her left eye when she cries. Then when we went to the Pediatric Opthamologist for Lily's eyes, they diagnosed her with "Sixth Nerve Palsy". Sixth Nerve Palsy basically means that the 6th cranial nerve which innervates the lateral muscle of the eye which works to pull the eye outward is weak, so she stays cross-eyed most of the time. It is very hard for her to pull her eye outward so mostly she just turns her head to look. The 3rd problem we noticed was that she has upper trunk, arm, and neck muscle weakness. We knew that Lily would have some physical setbacks and we didn't expect her to meet physical milestones like our other kids. However, what we found was that she plateaued with her development. Although she is 6 months old, she has just barely gained some head control, her arm strength is minimal, and she doesn't open her palm and grasp objects. We are obviously concerned. So when we went to Primary Children's Hospital last month for her check up we voiced our concerns with the Dr.'s. They were also concerned and ordered an MRI. I tried to stay positive, I really just thought it was a shunt problem or a Chiari II problem....if only.
Now it is a month later, the result of the MRI showed that Lily's cerebellum is growing at an unusually fast rate. It has basically tripled in size since her first MRI at 2 weeks old. Because there is only so much room in that area of the brain she has significant compression of her brainstem. So while the news was "bad news", I guess you could say that some "good news worked its way into all them plans". We did, at least, have an answer as to what was causing all of her symptoms. The facial weakness, neck, trunk and arm weakness, 6th nerve palsy, are all related to this compression of her brainstem. The really crappy news is that the Dr.'s at Primary's have never seen this before....like...ever! So while we have some answers, we have more unanswerable questions. We feel like we are pregnant again facing an unknown. We find ourselves wishing "if only she just had Spina Bifida". Again I find myself singing "Alright don't worry even if things end up a bit too heavy We'll all float on alright". Maybe if I keep singing it and telling it to myself, it will happen. Truth be told, we are worried.
The fantastic team of Pediatric Neurosurgeons at Primary Children's has at least come up with a plan. No, they have never seen this. No, they don't know what is causing it. No, they don't know if she will regain nerve function. No, they don't know if her cerebellum will stop growing. But they do feel that performing what is called a "Decompression Surgery" will benefit her. So back to Primary's we go. It's just another brain surgery after all. We are at peace, at least, that this is out of our hands. The 4 neurosurgeons are all in agreement. They feel that the risk is minimal and that there may be benefits to performing the decompression. Monday the 14th, we will go to Primary's and they will remove some bone from the interior of Lily's skull and some bone from her vertebrae and hope that it opens up a little more room for her brain.
Did I mention we are terrified? Decompression surgeries were common 20 years ago, but are rarely performed anymore. Our surgeon hasn't performed one on a SB patient for 15 years. We don't have any expectations which makes it harder. I just wish there was someone somewhere that has been through this that could tell me some good news. A story of a positive outcome.
http://youtu.be/CTAud5O7Qqk
