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Tuesday, February 19, 2013

Brain Fat, Autism, and Sucker Punches

What a long week it's been.  

Last week a lighting storm moved in, and, being as that we live in the Lightening Capitol, it really should not have been a surprise that our modem was struck, (as well as my neighbors modem, her phone, and her washer).  It's not the first time, nor will it be the last time, I dare say.  But, it was an inconvenience.  That, you can take to the bank.

I made a nice long post, saved in my inbox drafts, that I had intended to post as a blog entry.  Whatever happened to it, I have no idea.  But I am annoyed that it is gone.  I couldn't even tell you what it was about.  LOL  Obviously it was not anything earth-shattering.  Haha!

We did go to mass on Ash Wednesday... confession, Holy Mass, and ashes...  Lent has been beautiful and we attended mass on Sunday too.  I am so glad we went.  Robyn gave up sodas for Lent... and she's had a very difficult time when someone else is having one, and she has to pass on a drink. :)   It's good for her though.  It's good for all of us.

Today, I took Robyn to her pediatric doctor appointment... the results of all her bloodwork was in, and the results of the MRI on her brain are back...  (let me explain), she was diagnosed with delayed myelination as an infant, and had developmental delays...  and being legally blind... they blamed the vision problems (she is legally blind), on the lack of myelin in the brain.  (for those who don't know... myelin is the 'fat' in the brain that enables all those little signals to travel back and forth to where they need to go.  Such as if I touch a hot stove, my brain is signaled instantly that OUCH THAT'S HOT, and I move my hand.  Ergo, if the signals can't get to where they need to.... well, you can see where that would be a problem.)   So they said (originally) that the part of the brain causing the vision issues was because of the delayed myelin.  That it was not fully developed, and they didn't know if it would or not, or if it did, how much.  Fast forward and she is now twelve years old.  And the MRI they just did says that her brain is fine.  That her myelin is fine... and normal for her age.  Uh huh.  Well then why can she still not see?  No one knows.  Her eyes are healthy, but her vision is still very very bad.  Weird.

So.... her doctor has recommended we see this other "big city" doctor in Miami.  *sighs*  I am wondering if the insurance will cover it, and I am fairly sure they will but have to wait on their official word.  They want to rule out certain things, and re-visit the world of genetics too.  *whimper*  We've already seen two geneticists in the past.  I am not anxious to do that all over again, but it's my daughter.. what else can I do?     To add to my joy... our doctor has diagnosed Robyn with Autism Spectrum. 

 She's high functioning, and leaning towards Aspergers.  
This, I have suspected all along.  We have (yet another) referral to another place that specializes in Autism, so I have my referral in hand, and my phone call made.  Now I await the call back for an appointment. 

I understand there are parents out there who have children with cancer, ... life-threatening illnesses, and we are very very blessed and I get that.  And trust me, I am thankful.  But I have to tell you... I did get a few tears when she told me we'd have to drive a long way to another city to see another doctor... the only one of his kind in the state...  it reminded me of when people have to fly with their sick child halfway across the country to get to a special doctor or hospital... again.. not that I am remotely comparing...  I'm not I swear... but it was a shock to me.  The autism and Aspergers I have seen coming for a long time.  So those did not surprise me.  But some issue I'd never even heard of before, another doctor, another city, and re-visiting Genetics... I just flat out did not see that coming.  Doc was nice... she sent Robyn out while she and I talked.  Thank the Lord... Robyn did not see Momma wipe tears..  I "reeled it in", and got my composure back.  I've been holding it in ever since.  I called my own mom, and had a talk with her... she and my sisters helped me feel better.  Like I told my mom... She's healthy, happy, she's doing fine... but I was not expecting this, and though God knows it could be much worse... this is still a pretty big pill to swallow.   I hate to "poor me"... but right now I just feel that way a little.  God will get us through all of this though.   Funny.  I thought a week ago was the worst...  and then we got through it and hahah BOOM!  Now this.  I can't help but laugh a little.  Surely I have "sucker" stamped right on my forehead for being such a blissful dork over the last week. :)   My joy is still there... I just don't particularly like those sucker punches ya get sometimes. :)

1 comment:

  1. Susan,

    We want the world for our children. Sometimes we find out that there are limits to what we can actually do for them. Sometimes we can't make life perfect for our children. That hurts. We are mothers and we feel we should be able to protect our children better. I am so sorry you have having a hard time. It takes time to adjust to diagnoses. We look ahead and wonder what the future holds. It can be frightening when we aren't in control. But Robyn is surrounded with love and she'll be okay because she has you. I am guessing it is harder for you, having to dry your eyes and smile while worrying about Robyn.

    I am writing this quickly in an odd moment of time. Please forgive me if I haven't composed this quite right. I just wanted to stop and say "I love you" and I'm praying for you all. Please give my number one fan a huge hug for me. Robyn is very special even to me, halfway across the world.

    With love and hugs.