Wednesday, March 21, 2012

A Rare Experience

 Entrance to the Lili Claire Foundation. Place is in the most dangerous part of Las Vegas!
Tom said cops won't go into this neighborhood at night. I'm sure this place exists by private donation.

 Weird Statue. Mother and infant who may or may not have syndrome. LOL!

 Reception desk.

 Reception Area.

 Anxiously awaiting!
(Tom thinks I'm crazy!)

 Exam area.

 Other end of room where we discussed suspected syndrome.

 Bookshelf of medical books.

 Bradley didn't know he was at the most important appointment of his life!

Dr. Morris and Bradley <3

When we got there we filled out MORE paperwork!
Then we met with a genetic assistant.
She made a family tree of all of our siblings, parents, and grandparents.
She asked for a medical history of family.
Miscarriages, heart defects, infant death.

Then she left and I had to go potty.
I walked down the hall to use the ladies room and I saw into a glass door where
 Dr. Morris and others were sitting and discussing.
Discussing Bradley?
I don't know.

I took pictures of the place for the baby book.
People always think I'm nuts when I say it's for the baby book
but they NEVER mess with Mama!

And after an eternity, she entered and my heart stopped!
She had people with her. One of which I knew from church.
A friend studying pediatrics. He's going to be a doctor. It was nice to see him there.

And we started talking and she told me he DOES have a syndrome
and all of the doubt came off my shoulders and fell on the ground.

Dr. Morris is sure he has a RARE syndrome because all the
common ones were ruled out through tests in the NICU.
One that isn't named after the doc who studied it.
(Like how Down's Syndrome is name after Dr. Down)
She said the name of the syndrome will have the phrase "with a hypo-para-thyroid" in it.
She said she has an idea of 8 or 9 syndromes that it could be.
She needs to rule out somethings to narrow it down.
Testing his blood for immune levels and growth hormone levels.

She said he has a small nose.
She looked at all the pics of family.
She said "YES, he has a small nose."
I told her I cannot get the boggies out and I think it's causing colds.
She understood.
She wants us to do a sleep study because of his small nose
and see if he would bennifit from oxygen at night.

She talked about his brain.
She said she is seeing some one sided-ness.
She disagrees with the Neurologist and thinks his lobes have not developed at the same rate.
She's comparing MRIs.
And she believes there was some brain damage from his near death.
And I told her he grew of the aspiration and so I knew that.

As she was talking about his brain, the special dream flashed in my mind.
And the spirit told me, again, he is not typical!

I told her he is nothing like my other babies.
I told her I KNEW there was something wrong with his body the moment I saw him.
And she said "Mommies usually know! I listen very closely to what Mommies say."

The appointment took 3 hours and we walked out of there exausted but I felt lifted.

Bradley has taken me places, I would have never seen.
I'm meeting people, I would have never met.
I'm learning things, I would have never known.
My bowels are filling with compassion for those who struggle with poor health.
He is showing me what special really is!
It has been a beautiful day.
I know I am a GREAT Mother!
And Bradley is a GREAT SOUL!
And I am blessed because of his life.
And I feel God's arms in my tiny life and around Bradley.
I know he is with Bradley always.