Monday, October 3, 2011

g-tube update.

Today was warm.  Like Indian Summer warm.
I looked back through last year's posts and I said the same thing at this exact time then.
Nora has been sick with what seems to be allergies.  Her head is hurting, her eyes are itching and she threw up this morning.  She has slept so much over the last couple of days.

Mabel woke up with a fever today too.  It's hard to tell why, really.  She is teething and trying to get in her eighth tooth--a bottom sharpie.  I'm not sure what it's really called but that's what I'm calling it for tonight. 
 Despite not feeling good or being overly tired, our girl is always so happy. 
And today, when I opened the door and felt the warmth of the October sun on my forehead, I felt incredibly happy myself.  But then the wave of sadness rushed in wildly and stayed for awhile.  I'm not sure what causes it, but often it's a mystery.  I hate that I can be in a crowd of people and feel so lonely.  I hate that I can think about a hundred other things but the only thing that stands out is her.
Or what could be going on with her...since we still don't know and all.
As of now, despite suspicions and strong probability of a mito diagnosis--Mabel is still undiagnosed.  She is still part of the alarming statistic that haunts my days.
40% of children with symptoms of a syndrome or disease are undiagnosed. 
It's sad and it's so unfair.
 During vision therapy today I got the call from our surgeon.  I have literally been praying that if she was not the Dr. to perform Mabel's G-tube placement that she wouldn't call or that I would not feel a peace about it.  But the second I heard her voice, I did feel that peace.  A peace that let me breathe deep and enjoy, for a second, the thought of my baby getting all of her seizure meds.  The thought of her getting an entire feeding without choking.  The thought of her gaining weight.
Did you know that since Mabel turned 6 months of age she has only gained 2 pounds? 
That's shocking, right?!
So the surgery is scheduled.  We will travel to Chicago in a couple of weeks and Mabel will have the muscle biopsy that will hopefully confirm a mitochondrial disease and she will also have a G-tube placed.  If you have not researched this type of feeding tube, please do so.  They are incredibly common among children with low muscle tone, like Mabel.  They are also very common in mito children. 

I am relieved to have set a date and am anxious to go ahead with the procedure.  We wanted to get her in before flu season and thankfully it's only a 2 day stay in the hospital.  I just know that this is going to make things so much easier for our girl.  All of your prayers are so deeply important to us and we are thankful for each of you!

Hoping that everyone is well tomorrow and we can move ahead with schooling.  It's been an odd sort of day but I can't wait until everyone feels like themselves again...

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