Wednesday, June 29, 2011

My Beautiful Ballerina, Dr. C, and News

Someone has been blessing Caroline with ballet lessons since September.  And she has loved every minute of it (even if she does look utterly terrified in the picture.)  Her recital was last Saturday, and she was, of course, a beautiful ballerina in a sparkly, fluffy white tutu. She looked magical and totally enjoyed the process...except maybe the abject fear of being in front of a packed house.

So after her performance, the room mom came hurrying down the aisle to retrieve me, saying, "You need to come now."  Uh, okay.  I follow her into the room and Jen explains that Caroline had been white as a sheet and was laying on the floor.  Caroline says she is just tired.  I scoop her up and decide that maybe she just needs food.  So off I go to grab a chicken salad sandwich and feed her.  She seems to perk up and goes back to the room to await the grand finale.  Only a few minutes later...I once again am retrieved from the audience.  This time, I am not so sure it is a real problem, so I just keep her and let her sit on my lap. 

The next morning, getting ready for church, she comes down the stairs and says her legs feel funny.  Um, funny they hurt?  ache?  feel heavy?  They feel heavy.  Why does this feel like Groundhog Day?

Tuesday I spoke with Dr. T and she informed me that they were ordering a new MRI for Caroline to see what happens to her brain stem when she bends her head back and forth.  She doesn't appear to have a Chiari, but the basilar invagination is distinctly possible. 

So I was determined to show her MRI to Dr. C here in Cinci.  Only I forgot it.  (I obviously lacked some organization heading into this trip!)  Billy managed to upload it, Will downloaded it and printed it on a CD, and I handed it to Mimi and Dr. C. 

Essentially...Will's MRI looks pretty much the same as in November after the procedure.  There is still a flattened area that they hoped would become a little more round.  At this point, they will perform an MRI in a year and see what it looks like then.  This finding would pretty much agree with Dr. Cohen in that the brain stem is permanently damaged.  Not news I want to hear, but neither is it surprising.

He looked at Caroline's MRI and agreed that we need the second MRI with flexion and extension.  His conclusion is that the Chiari issue is still in question because the bone structure used to measure the presence of a Chiari was not well defined.  The real issue was the brain stem.  There is evidence of cervical instability (the cervical spine is not stable) and the brain stem looks like it may indeed be compressed like Will's...just not as badly and for a shorter duration.  So, he believes she will need to have her first few vertebrae fused like William's, and the need for a chiari decompression or a transoral odontoidectomy is still unknown.

So, my beautiful ballerina does appear to be trekking down a similar path as William.  Am I in a panic over that?  No.  Am I sad?  Yes.  I have cried buckets this week.  But we do have a sovereign God, we do have amazing doctors, and we are catching this early.  Will that change her outcome?  No clue.  Since we don't know how much of Will's issues are mito and how much are brain stem issues, then we have no way to project how Caroline will progress.  But we can be thankful for today and for ballet recitals and fluffy, sparkly tutus that bring joy to her which in turn brings joy to us.


Janice said...

I want more pictures! I'd love to see her dance with Jessica.
Nancy, know that I love you and am praying hard for comfort for you and all the rest of the family.

MrsC said...

I contacted Charlena about taking Caroline to NY to see Jessie dance. Not sure how to work it right now, but I'm checking hotels, etc. Thank you for praying for us and for loving us. We love you!