Wednesday, January 9, 2013

We'll all float on

This afternoon as I drove Wyatt to Kindergarten the song "Float On" by Modest Mouse came on the radio.  As I listened to the lyrics, I realized that this song sort of fits how we need to face our worries.  "Bad news comes don't you worry even when it lands, Good news will work its way to all them plans". Seems like all we have been getting is bad news followed by more bad news.

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!  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.

Again Corbin and I wish to tell you all how much we love you.  We thank you for your continued prayers.


  1. We are definitely praying for your beautiful Lily, and your whole family. I can't imagine the stress and worry that comes with the unknown. I hope everything with the surgery goes perfectly! We love you guys.

    And PS. I LOVE the photos! So cute!

  2. You all will be in my thoughts and prayers. Lily is so beautiful. Love your pictures. You all are perfectly lovely! I know the stress and worry you are going through. Know that lots of love and prayers are with you. You are not alone.

  3. Your babies are beautiful! And know that we are honored to be joining your family in fast and prayer this Sunday on Lily's behalf.

  4. I'm at a loss. I agree with your words, "If only she just had spina bifida." I can't imagine the stress, worry and "what-ifs", and I've had many of those feelings before. But I've always known that although the experience was new for us, others had gone before us. But this road is being paved by Lily and her loving family. I noticed Jillian mentioned a family fast on Sunday. We're going to pretend we are related and join in that fast. We will pray for miracles, peace, and answers. Love the photos!

  5. We always are keeping you in our prayers it must be hard not sure how you deal so well. But at least you have her here and her sweet little smile in her christmas picture means that even with all this going on at least she knows she is loved and her mommy and daddy are blessed and she looks happy even just for a brief moment in time. Hang in there your strong and The lord is watching out for you and your whole family

  6. Thanks everybody! Millie, I know you understand and we would much appreciate your added prayers and fast! Hope you and your cute family are doing well. Lily is the best! She truly has the happiest, calmest, sweetest little spirit. She wakes up smiling and doesn't stop until she goes back to sleep. We just feel incredibly blessed to have her.

  7. Hi! Not sure how I stumbled on your blog, but your children are beautiful! I have a 6 year old son with Spina Bifida. Anyway, I know lots of people whose kids have had to have decompressions! Have you been to the Babycenter Spina Bifida kids message board? Feel free to ask any questions there, and I'm sure you will receive helpful responses and support: