Wednesday, August 8, 2012

We Keep On.

After over three years of medical tests, and nothing but "normal" results, hearing that there is, indeed, something structurally abnormal about our daughter's brain has got to be the some of the hardest pieces of news I've ever received.

Sammie B's cerebellum - the part of the brain that controls movement, coordination, and balance - is on the smaller side, and not growing as fast as other parts of her brain.  That's the hard part to hear.  The words that literally made the blood rush from my face today, my stomach get queazy, and the tears immediately start pouring down my cheeks.  I think B and I both fully expected "normal" results from this MRI, so this one knocked us over (me more than him, he is a model of strength in these moments, no doubt; I'm a model of a puddle on the floor!).   

The better news is that our neurologist said the images and these results don't change his optimistic view of her future.  We knew this was likely something with her cerebellum because it is her motor development that is affected.  Her balance.  Her coordination.  Her movement.  The images didn't surprise him. 

He believes she'll only continue to progress, as she always has.  That with practice and hard work and all the things that she does anyway, she'll progress.  Things will get easier for her.  That she will live a long, bright future. 

Progressive, denenerative and fatal are the three words along this journey that truly, truly have the power to knock me to my knees -- words that I can hardly speak out loud when it comes to my child  (words that no mother should ever have to worry about in relation to her child) -- and today on the phone, the neurologist said he was confident that none of those apply to whatever is going on with Samime B. 

We have some follow-up blood work to do to rule out some things, but again, the neurologist said he fully expects those tests to come back negative.  We already had some blood work done while she was having the MRI and so far, the ones that have come back have been negative . . . We'll have more blood draws in the coming weeks and awaiting the results of everything is sure to cause me some restless nights and fleeting moments of panic, but I know I have to figure out a way to keep the worry from paralyzing me.  From letting it stop me from enjoying the right now.  

I have to figure out a way to keep the worries of tomorrow from robbing me of the joys of today, and there are so, so many joys in our every day. 

So, we take this news, and we keep moving forward.  Inspired by her.  Knowing that only she can reveal her destiny to us.  Knowing that the sky is the limit.  Knowing that no test, no MRI image, can tell us what she will or won't do.

We know so much now about the idea of neuroplasticity.  We know that when one part of the brain is deficient (a dumb word in my book, at least when referring to party of my girl's body) in some way, that other parts of the brain can be "re-wired" to take over the functions of that other part of the brain.  We know that people can be born without cerebellums and live long, healthy, full lives.  And after all this next round of testing is finished, we'll meet back with the neurologist/movement disorder specialist and we'll talk about how these findings can help us help her, and I truly, truly believe that knowledge is power.  Even if, at first, the knowledge knocks us over.  It is what we do with it that counts, right?

We keep on keeping on, inspired by her smile, her grace, her determination, her perserverance.  Her.


Dinei said...

Just letting you know that you're not alone out there. I'm so sorry that the MRI wasn't normal, but being this much closer to an explanation - an explanation that does not involve those three dread words - means you are closer to feeling secure. Thinking of all of you.

Anonymous said...

Sending some big ((hugs)) your way! I'm sorry the MRI did show some abnormalities, but I hope you can take solace in the fact that the neuro doesn't think there is anything degenerative going on and that Sammie B will only make progress. I know that shocked feeling you have. I fully expected Trevor's microarray to be "normal" and not show any abnormalities, but it did. He will write his own story and I know Sam will write a beautiful one as well. Again, ((hugs)) to you!

Amy H said...

We found out that my son had a smaller than normal corpus callosum when he was 17 months old. We were told that it could be affecting his brains ability to communicate with his body for motor planning. He is 3 years old and is only just now beginning to army scoot with his arms only, his legs just drag behind. The only word he consistently says is "mama". I post here and there on babycenter as devdelaymom. It is very confusing to me, as lots of people out there function perfectly fine with a missing corpus callosum. It almost seems to be worse if it is smaller than normal. At least it seems that way from anything I've seen.

laurelsmom said...

Wow - that one kind of took me by suprise too.. I guess I'm just used to our babies being tested with no new information as a result. Hugs Hugs Hugs to you. I can't wait to see the next series of Sammie's achievements. That look she gave you a couple of weeks ago on the riding toy... take another look @ it now. It says "screw-you-abnormal-MRI-I-can-do-it"

schlennerfamilyof4 said...

Sending you much love! I am so sorry that the MRI turned up with abnormal results. However, nothing can or will determine Sammie's fate. She is a strong little girl and I know she will do amazing things. Give comfort in knowing how much she has accomplished and just know this does not define her. This is only one small part of that magical little girl. Big hugs from us! xoxo

Anonymous said...

You know what? This is okay. Nothing's changed. Sammy's cerebellum is lagging behind in growth but not stopping growth. It WILL catch up. Neuroplasticity is truly fascinating because Sammie's brain does and will continue to make amazing connections (skirting the less productive areas) to compensate. Who really gives a crap if the reason why you can perform math at all is because your brain made a new bridge around the location that normally works in order to perform math. I know a boy who has a serious disorder (MPS 1) and he can't lift his arms over his head. I never noticed because he compensates so well that he shoots baskets all the time.

Sammie will continue to be her magical self. Sammie's brain compensates for her cerebellum being slightly smaller. Sammie's cerebellum will continue to grow. Sammie's therapy ALONE will get her to point B, C and D. If it's not as quickly as Mia, so what?!

But it's still tough to hear, I know. We're still human and we're moms and we love our babies and no matter what is "wrong" with our children, we want to hear that all the tests are NORMAL.

This time you received something different. But, most importantly (as you noted), she has NOTHING progressive, degenerative or fatal.

Sammie holds the keys to her future. And it's bright. Very bright.

Erica said...

oh honey. im so sorry the results were not what you expected-but this post was so positive as usual. you have so much to look forward to with Sammie-so much. and that makes me happy. I know you dont ever take any of her progress for granted and that can be such a gift. love you.

Jen, Paul and Gracie said...

Oh Allison,
This post really hit home with me. Last January when we had the MRI finding pertaining to Gracie's cerebellum, I had so many of the same mixed emotions. Your words are beautiful and inspiring, and well Sammie's smile in that bottom photo just melts my heart. Our neurologist is in the process of referring us to a cerebellum specialist in CA and I wanted to see if you are familiar with this physician. I have your email from Gracie's carepages account and will send you a message.