It's Complicated. And good.

Celia had her MRI yesterday.
The results are good, but it really complicates things.
You see, her brain, (which should show damage due to CP) is...
....perfectly normal.
Can I get a Hallelujah?
I cried big, ugly, happy tears when we got the news!



However, now we are in limbo. 
Does she have CP but no structural brain damage? 
(She could have functional damage that would not show on a normal MRI and she is too young for a functional MRI because she would have to respond to commands.)

Does she have another neuromuscular disease that mimics CP?
Does she have a "syndrome"?
We are left with so many unknowns.
As the Neurologist said, we need to start looking under every rock to see what we find.

Disconcerting and very scary- there are some big bad yucky things that it could be, and we must begin the arduous process of testing, waiting for results, trying not to worry, and eliminating diseases.

And all that may lead us right back to CP.
(11.2% of CP kids have a normal MRI)
And no, I didn't g@@gle.
I had a dear friend do it for me- HA!

 All we know is: That right now, she is getting stronger. She is sitting on a moving ball without back support, and can hold her head up. She is eating exactly what her sisters do at each and every meal and she is not choking-she is CHEWING! She is talking and tries new words every day.
 Her therapists are AMAZED at her progress from week to week. She uses her hands more to play. She reaches out and strokes my hair, and says "Hair". She hotdog rolls end over end to get where she wants to go. She can get stuck in a corner in her walker and back up and turn around.

So today, I choose to REJOICE at the wonderful new of today:
No structural brain damage.
A perfectly formed little brain.
WOW.

The sky is the limit, and she is reaching for it.

And regardless of what the end result is,
God is in control.


"Tada!!"

"For you formed my inward parts, you knitted me together in my mother's womb."
Psalm 139:13

Comments

  1. KJanuary 22, 2011 at 2:31 PM

    Alright, deep, deep breath! What amazing news! Yes, and scary too, the unknown always is. However, if she is making as rapid progress as you've indicated, the sky definitely is the limit. I'm a birth assistant and I know there are birth injuries that can appear to be CP but babies can recover from them if treatment is started right away, medical and holistic, depending on the condition of the baby. If something like this happened to your Celia, and she wasn't treated right away, perhaps now is when she'll make her recovery. On the other hand, as you also pointed out, some kids with CP have normal brain scans.

    From where I am, the outside looking in, I hope that all you are doing for Celia will eventually lead to a completely recovered child who will one day run beside her sister. The most important thing, though, is that by being in your family, she will have the chance to go as far as she can no matter how far that turns out to be.

    My prayers are with you all!

    ReplyDelete
  2. NavhelowifeJanuary 22, 2011 at 3:20 PM

    I'm so pleased, there are no words!

    ReplyDelete
  3. SueJanuary 22, 2011 at 5:18 PM

    I am happy about the news. Eventhough we all have the fear of unknown, we also have hope and faith. And that is what will get you thru any thing you need to and if Celia has a diagnosis that is worse then you thought, you and your family are so strong and showing her so much and loving her unconditionally and as you said, she is getting stronger and she has so much potential and with the love she will have the unlimited sky.

    ReplyDelete
  4. DonnaJanuary 22, 2011 at 9:36 PM

    Keep up the good work mommy!! Love is changing this little ones life :)

    ReplyDelete
  5. Lee Ann KnappJanuary 22, 2011 at 11:23 PM

    Oh wow! All I can think when I see your pictures and read your blog is where Celia would be right now without you! It is amazing what love, nutrition, therapy, and attention can do. She is so blessed to have you and I know you are blessed to have her! We will be praying for you guys as you go through the testing and the waiting.

    ReplyDelete
  6. KimJanuary 23, 2011 at 7:46 AM

    Great news! And I am so proud of you for not G@@gling your little heart out when you got the regarding other probabilities. Keep up the good work, Celia! Your family's love as well as that of our Lord Jesus Christ will help you learn that the sky has no limits!

    ReplyDelete
  7. KellyJanuary 23, 2011 at 4:34 PM

    I am inspired :-)

    ReplyDelete
  8. Grandma and GrandpaJanuary 24, 2011 at 1:42 PM

    I am claiming God's word on behalf of Celia. In her mothers womb she was fearfully and wonderfully made. 2 Timothy 1:7 says "God has not given us a spirit of fear, but of power and of love and a sound mind." THE BIBLE SAYS IT, I BELIEVE IT, and for me THAT SETTLES IT.

    Celia was placed in your hands to give her the very best chance she could have - A loving family, great medical care and a God who can do ANYTHING!!!!

    ReplyDelete

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