A detour in the road

There was a detour in the road of Nellie's journey. I guess in a way that is why it's been so long since I posted. We have gone through a battery of tests from Genetic doctors to developmental pediatricians. I guess since she was born I have been searching diligently for answers. I have crossed every bridge and walked barefoot down every rocky road of the medical society I could. I needed to know, being a person who hates a mystery. I was the kid who pulled back the corners of Christmas gifts on Christmas Eve just to see what was inside. So in a way Nellie was my Christmas gift. The best Christmas gift ever, yet I needed to know what was inside. I had to find out what was hidden below the surface. Today I found out.
She has something wrong with her DNA (Could be chromosomes after the doctor started talking his voice droned out into an annoying buzz). Anyway he has her listed as Clinically uncertain and can't find much literature on what is wrong with her so we will wait and see I guess.

I cried again. I cry a lot these days when it comes to Nellie. I mourn what could have been. I ask what I could have done. In the end I know Nellie is who she is because God made her that way. I was IM'ing with a friend a little while ago and I hope she doesn't mind I share our conversation as it says it all about how I feel about Nellie.



12:13pmMe

the one thing we know at this point is everything wrong with her now has one answer

autism visiual impairment hearing loss everything

12:13pmCandi
would you mind if i have your family added to a prayer chain?

12:14pmMe
and the list is long

12:15pmCandi
omg it's been a hard week for people conected to me :(

12:15pmMe
This isn't so hard just hard to hear if anything I should be praising God for the answers I begged him for

you know someone once asked me how I could believe in a God who would make children like Nellie

12:16pmCandi
really?

12:16pmMe
and I say how could I not believe in a God that would make such a loving, sweet little girl

A God that chose me because he knew I would do for her everything I could and love her harder than I have ever loved anything

12:18pmCandi
omg you've got me crying...i don't even know nellie but when you look at her you see a beautiful, sweet, kind-hearted little angel...she was put here for a reason

12:18pmMe
I favor Nellie, it's not just me everyone in this house favors her everyone who meets her favors her

her teacher even said nellie was her favorite

that little girl is destined for great things she's got this magnetism about her that makes everyone want to love her

12:19pmCandi
i wish i could meet her...and you and the others too

12:19pmMe
she doesn't hug or kiss but she just smiles and it's like omg that smile is for me

thanks Candi

we'd love to meet you too

one day I'm sure

12:20pmCandi
i'm trying to read about chromosonal anomolies (sp?)...i think nellie is a miracle

12:21pmMe
it's not so much the chromosome it's the dna in them or something I have no idea how to explain it after not getting better he just sounded like an annoying buzz lol

12:22pmCandi
i've read that 139 in 140 fetus' with a missing chromoson spontaneously abort....nellie is meant to be here

12:23pmMe
she has a single umblical vessel too which has a greater risk of miscarriage

she only weighed 5'15 full term

12:24pmCandi
nellie IS favored...God CHOSE her to survive!

12:25pmMe
you know I will say one thing for my grandpa that he did in the very end he brought me back to God and he was the one who always said Nellie is just fine and I'd say grandpa the doctors said this or that and he'd look me straight in the eyes and say Nellie is just fine

and I know for the rest of her life he will be on her shoulder just as he was always with her when he was alive

12:26pmCandi
and she is...she's exactly the way God intended her to be

12:27pmMe
she has an abundance of prayers said for her all the time and she loves church even if she doesn't fully understand it she is a friend of God

12:28pmCandi
that's so great to hear

12:30pmMe
lol I was trying to explain chromosome to the kids and emma says I think I only have two of those so nellies ok lol

emma explains it all

12:35pmCandi
awww, cutie emma

12:57pmMe
ok her regular doc just called they have her listed as clinically uncertain because whatever all this is is very rare and the genetic doctor wrote there isn't much literature

1:28pmMe
hehehehehe wanna hear the course of treatment?

1:28pmCandi
sure, lol

1:29pmMe
what she's getting already

lol the doc just don't know lol

she's making his butt work

1:37pmCandi
i asked my friend nicole to pray and explained the rarity of it to her...she says that nellie was put on earth to teach people about this syndrome

1:41pmMe
In a way I think Nellie was put her to make us all see that no matter what we need to forget about the bad things in life and just smile :)

1:42pmCandi
yup :D


So to finish todays blog I just want to say smile for Nellie. I figure if she can smile through everything she's been through what right do we have to frown?