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Sunday, August 19, 2012

My worst nightmare

My heart has been torn in so many directions lately. This time it is my sweet baby girl. Unfortunately, my daughter has become ill with a virus that caused her to become ataxic. Imagine the panic I felt when I watched my beautiful daughter who has been developing normal loose those skills. She became so weak and lethargic and had difficulty even sitting.

We took her to the pediatrician on Thursday. Since I am an experienced special needs mama I was armed with a video in hand. My original fear was confirmed that the behavior she was exhibiting was not normal. He thought Julia had an enrovirus that had been circulating our area. It fit all the signs. Given her big brothers history he thought maybe she had some low tone and we should make an appointment with neurology. I stand weeping once again in my pediatricians office. Thinking how can I possibly do this again. Thinking selfishly what I did to deserve these things. I quickly reminded myself this is not what I should be feeling other children are experiencing far worse medical diagnosis. I left there Thursday thinking I had another child facing challenges. I left there thinking this was just a virus running its course.

Fast forward to Saturday. Bob tells me she is still extremely irritable and unable to support herself. I rush home and off to the ER we go. Of course it is summer in Delaware and I have two words beach traffic. We got here in an hours time and was taken back immediately. I spoke to doctor upon doctor. We are getting consults from neurology. Next thing I know we are headed for a CT scan, MRI, and spinal tap. Hours of testing a multitude of labs and the words of being admitted at 10:45 last night.

I was told at that moment it could be viral meningitis or encephalitis. I was told it could be post viral acute cerebellar ataxia. Okay I am familiar with all the big medical terms. Heck I probably can publish a medical dictionary. So I wonder is this impacting her for the long haul what are we facing.

It is now almost 24 hours since we were first admitted. What we know is it doesn't appear to be bacterial. We have seen a neurologist and an infectious disease doctor. We are running more tests and are leaning towards a virus causing ataxia. My sweet girl is in an isolated floor for infectious disease. She is seeing strangers in masks and cover ups. Little did I know her big brothers strength has warn off on Miss Julia. She has been so brave through every poke, prod, and test.

Now we wait. Wait for results wait to see how Julia's little body recovers. Our little family cannot wait to be complete again. Bob and I can't wait to bring our baby girl home. Be strong baby girl mommy loves you so much.


  1. You are strong, Renee! One of the strongest, for sure. I hope your family is back together soon, safe and healthy. Love you, kisses to Julia and big hero brother, Hayden.

  2. Oh, Renee!! I am just seeing this for the first time, TODAY!
    My prayers are with you and your family.
    Big hugs to all of you! I know you'll get through this! You're the best example of how strong a mommy can be... Love to you guys and a big kiss for that beautiful baby girl!!

  3. How scary!! I'm so glad she seems to be improving. I pray she regains her abilities quickly!