We're home..again.

Posted by Heather , 7.16.2008 10:37 PM

Hi, everyone.  This is Heather.  We're home--hurray!  Sis and I decided we don't really like having sleep overs at the hospital.  Next time we're voting for somewhere with a spa or even a tent or cabin.  Just somewhere where they don't wake you up every couple of hours to poke and prod you in the middle of the night.   We did, however, get to watch Barney and Mary Poppins and visit with my Aunt Kate who surprised us with a visit and an awesome care package.


Can I just say that Sissy is a little trooper?!  She did so well.  She was actually laughing and joking with all the nurses and doctors...until she woke up from the spinal tap in pain.  Then she pretty much was ticked at everyone the rest of the time, which I can't blame her for.  She is still pretty sore, but the doctor said it should stop bugging her in the next couple of days.

So, we still don't have a definitive diagnosis.  We know a whole huge list of things it isn't.  Some of them are very unpleasant...like tumors, lesions, meningitis, etc., etc.  The list of what they think it might be is pretty short and none of the possibilities come with any way to treat them.  Most likely it is post viral cerebellitis.  The doctor explained to us what that means is you get a plain old virus of some sort, like a cold.  Your body responds by making a whole bunch of antibodies to fight the virus.  Sometimes when the virus is clearing up, but you still have all these antibodies running around looking for trouble, they see something that they mistake for the virus.  In this case, the cerebellum.  They attack the coating around the nerve cells, generally messing up traffic.  The cerebellum is what controls the muscle coordination needed for balancing, walking, using your arms, eye movement, etc.  That is why Sister seems so drunk.  Her brain is being attacked by her own immune system--probably.

There is a very very slight chance that it may be genetic.  Some people are just wired weird and will have bouts of episodic ataxia throughout their lives.  Similar to post viral cerebellitis, there is no treatment.  You just have to wait for your brain and/or immune system to sort things out.

We are hoping that she snaps out of it quickly so that she doesn't lose too much muscle tone and developmental milestones.

The plan is to just try to live as normally as possible, trying to help Sister find her legs and arms and anything else that has come up missing in her little noggin, while not neglecting Brothy too much.  He has been such a sweet big brother.

Today I cut up a bunch of watermelon and Brother kept asking for a piece.  I would give him a piece then give him a little piece to put in Sissy's mouth in the family room.  She was laying on the floor, waiting with her mouth wide open like a little baby robin.  He faithfully would walk in and plop the watermelon in her mouth. Until the end when he started forgetting that he was taking it to her and accidentally shoved it in his own mouth.  He gives her lots of kisses and pats when she seems sad.  

JT bought the kids a little doctor set and they spent about 45 minutes before bed checking each other and Mom and Dad and their baby and frog out with it.  We all appear to be in generally good health.  Brother and Sissy are actually opening their own clinic.  So let us know if you have any dolls or stuffed animals with any ailments.  They charge a very reasonable co-pay and they accept all insurance companies.

So, we're good, a little sleepy and wobbly, but happy and thankful.  As a parent, you go through a weird roller coaster ride when you think your child might be permanently damaged, or in potential danger.  It's like a mini-grieving cycle or something.  I am so impressed with our friends and family members who parent children with significant health concerns.  What faith!  I have a long way to go.  

Thanks again for all the prayers and support.  We are so blessed to have such awesome family and friends.  Love,
Heather

1 Response to "We're home..again."

The Farrell Family Says:

Hi there, I found your blog through Justin and Angie's. I'm sorry to hear you guys have been going through so much with your little girl. I hope things get better for her soon. Take care and keep in touch.
Ashley

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