Genetics update...somewhat

After waiting two months on information from Lilah's genetics test results, I found out last week that the geneticist said they never received the results. So, I called my pediatrician again...

then, I took matters into my own hands. I called my friend, Dawn, who is an audiologist here in town and asked her if I could borrow her fax machine. She faxed the results of the micro chromosome array analysis to the geneticist....and I waited until the fax conformation came through

THEN...I called. "Did you get it?", I said.
The secretary said, "yes"
I said, "Could you please go place it on Caroline's desk? Thank you."

Now, you might be asking some BIG questions, like...

Why did we have to give the geneticist the results?
Why didn't they call us with information?
Did the geneticist not do the test?

Well, here are the political, not-so-nice, but really the honest-to-goodness truth:
The geneticist told us that if Lilah's blood was drawn at MCG that the hospital would take MONTHS just to allow her blood to be given to another hospital or school due to hospital political junk. So, he said our pediatrician would have to take the blood and send part to Wisconsin, for the Peters Plus Syndrome study, and send the other portion to have a micro chromosome array done. So basically the geneticist has done NOTHING but give me a bunch of numbers and the run-around.

If you think I am frustrated...it gets better....

So, Monday rolls around and I call the genetics counselor. Left a message..no call back. Then Tuesday I called, and Wednesday...
Finally, she calls today.
She tells me that on page two of the report it states that the specific gene on Lilah that has a deletion could be a familial variant, OR a new gene.
Here is what she said,
"You and your husband have these harmless genes(variant with unknown clinical significance) in your blood. This deletion could be one of those that was passed to Lilah. OR it could be a new gene with clinical significance that could show mutations. You need to get your blood and your husbands blood tested to see if it is harmless or something more...harmful."
So, I called my pediatrician, got an order for Aaron and I to have our blood drawn under this code that would show whether or not we have given her this gene that is "nothing" or if Lilah has a new mutated gene that could cause her issues forever.

I called Aaron, he had JUST started his lunch, and asked, "Could you please go to Cossio's office, get the order and go to the lab and get your blood drawn?" After some prodding about what his boss would say about lunchtimes, etc. He said he would.

I rushed and changed my clothes and Lilah's, went to get Eli from school, then hurried to the lab.

On my way Aaron called and said, " Got the order and my blood drawn. Cossio wasn't quite ready when I got there, but we chatted for a minute and he gave me the order."

I said, "Thank you. Did Sharon(Cossio's nurse) see you?"
Aaron said, "Yes, she and Cossio...and Sharon said you are too fast for her and Cossio said that this will come back as nothing."

So, as I had my blood drawn and told Eli not to look( he was so worried about his Mama) I kept thinking about what Aaron had said....

Nothing.

If all of this proves to be a genetic mis-fire and that they cannot explain it...and once again, God is in control...will the therapists and people who STARE at her ever stop asking what "IT" is? and can I finally just rest knowing that she is mine and who cares what this "thing" is that she has? or do I need to know the answers so bad so that I can help her, be the best Mama to her, and stop wondering? I feel like I am failing no matter what I do. When will the answers be"enough?" Am I doing all I can? Am I missing something?

So, our blood is at the lab...and once again we wait....and pray to trust in the ONLY thing we know for certain:

God gave us Lilah, and no matter what she is mine and I love her with my entire being!

and..........

I will NEVER stop fighting for her!