Monday, April 30, 2012

Kids Like Bradley

There is a girl at PT who's name is Gracie.
She is in a motorized chair that she can drive herself.
She cannot talk.
She has an ipad on her chair and she types things into it and the ipad talks for her.
Her Mom drives a van with motorized ramps and the plates "4UGRACIE".
Gracie always has a huge smile on her face. Ironic how her name suits her.
She always points to Bradley and smiles.
One day she almost ran us over when we came in the door because she was so excited to see us.

 Today her mommy said that she would hate to have to wear a helmet like Bradley.
And she remarked that Bradley didn't seem to mind it and what a good baby he is.
I told her "he is!"
I told her that we are trying to get him to hold up his head.
That the helmet is supposed to help.
She nooded.
I told her that he has health problems you cannot see.
Thyroid, a g-tube, seizures.
I told her that we are waiting on a diagnosis.
She said that Gracie has been waiting for a diagnosis her whole life.
The conversation stopped abruptly when we were called back.

I told Bradley's therapist what Levin had said about being diagnosed.
She said lots of her kids that go undiagnosed, eventually are diagnosed with cerebral palsey.
I told her I'm afraid of that.
I told her I'm afraid of a chair.
She told me not to fear it. She told me a diagnosis will do so much for us as far as getting help.

 I just don't want a kid in a chair. Mostly because of the logistics.
The physicality of taking him with us.
Needing a different car.
Being able to stay in our two story home.
Potty training, school, marriage, normal life stuff.
I'm scared of what being in a chair means for Bradley.

I'm currently fighting with the insurance to get them to pay some bills.
I'm also trying to get help from the government.
Because for a kid like Bradley, there is never enough money.
And I had a terrible afternoon of being on the phone the entire time,
while trying to make dinner and do homework.
The kids are so loud!
And I was rushing around trying to get things done, and I had left Bradley on the front room floor so I could hear the other person on the line.
And when the phone calls finally stopped, I came back and sat on the chair near Bradley.
And he rolled over twice to be closer to me and kicked my foot to get my attention.
And I suddenly noticed him (because he was kicking me)
and I picked him up and realized he IS making his own way EVEN with his physically challenges.
And Bradley is not sad about any of this.
Infact he's very happy about his life.

And he is my shinning example of how to do it.
Just do it, however you do it.
And be happy :)

Sunday, April 29, 2012

Something About Love

This little boy has taught me something about love.

Love for me.

Love for Bradley.

 Love for all of God's children.

Love is what binds us all together. Forever.

So many of my lonely times have been shattered by Heavenly Father's love for me and Bradley.

And love will reach around us all. And it will pull us all closer to our Father.
And we will all be bound together, forever in our love.

Thursday, April 26, 2012

A Diagnosis

We really do make cute babies.
Even the one, who the docs say, has dysmorphia, is a cutie-pie!
When we moved into this house, we knew we would have more children.
And I needed a pediatrician that was close by.
And I asked a few people. And someone said to try Dr. Levin.

And I took the kids in to see him.
And I liked him.
And I asked what he thought of home birth.
And he liked it very much, he said.
And at the time that was the biggest thing for me.
And he said if I had a boy at home, he could do the circumcision
and the PKU if I brought the baby in, a few days after the birth.
And I decided to go ahead and have my third.
And Jacob had nut allergies and staples in his head.
And I liked how Dr. Levin was.
And my third baby came. And she didn't need to be circumcised, but at six days old,
she got a boil in her diaper area.
And Dr. Levin sent us to Sunrise to have her treated with antibiotics through an IV.
And we were release in six hours on an oral antibiotic and she thrived.
And I was grateful he was so cautious and didn't try to treat such a tiny baby who
 infact had a staff infection, with oral antibiotics only.

And then my fourth baby came.
And Dr. Levin said he was tiny but that he was sure I could grow him.
And he had me come in every other day for weight checks.
And Bradley had lost three ounces after birth, but regained it by his 7 day check.
And I convinced Levin that Brad was okay, and he was eating,
and Dr. Levin said he would not worry about us.
And that Saturday Bradley could not suck.
And I dripped milk into his mouth the whole day.
And Sunday morning I called Levin, and he said to come down  to the office.
And the moment he saw Bradley, I could tell he was worried.

And he helped to preserve Bradley's life.
And he called me a few times while Bradley was in the hospital.
And when the docs in the NICU started talking about chromosomes,
Dr. Levin told me he had been a geneticist 15 years ago.

We went to see Dr. Levin for Bradley's 9 month, well check.
And he wanted to know how Dr. Morris was.
She had been his boss once.
And he said he was in the mood to talk about her, even though it was unprofessional.
And he told me he was making waves in the genetic community,
fifteen years ago and so she fired him.
And he couldn't get into any other job within genetics,
because it was an elitist group
and he had messed up his opportunity by being, what Dr. Morris called, "unprofessional".

And so he decided to just be a plain old pediatrician.
And he set up practice in Henderson, and soon the other docs in the valley forgot about him.

And I can tell by the way Levin talks about his old work that he is still
very hurt by what Dr. Morris had done to him professionally.
But I KNOW Dr. Levin is supposed to be Bradley's doc.
He has helped me so much through all of this and he is a perfect match for our family.

He said he was mad that Dr. Morris cannot hurry it along a little.
He said that my son has a serious condition.
He said the other day a child came in, who they suspect has a known fatal syndrome,
and that when he saw the child he was taken back, because he knew exactly what he had.
And the child's father asked if Dr. Levin thought he had the syndrome that was so fatal.
And Dr. Levin told the Dad he did think so.
And this family is on a waiting list to see Dr. Morris,
but they had heard about Levin and wanted to know what he thought.

Levin thinks Dr. Morris doesn't know what Bradley has because she would have said it if she did.
And Levin has no clue because genetics has passed him by.
And he said there is a chance Bradley will never be diagnosed.
That only 60-70% of children are diagnosed.
And he would refere us to Salt Lake for a second opinion.
I told him I didn't need a diagnosis and that I'd think about it.

And I came home and called Salt Lake and they put me on the schedule to be seen,
Tuesday, December 18, 2012.
Hopefully, Morris has answers before then :)

Wednesday, April 25, 2012

Watching the Son

Most of my life is pretty easy now.
We have settled into a routine.
And the only "hard" things I have to do are blood draws.
We saw the Endo last week and he said we had a NSD; non-sufficent draw.
We had been to the lab a week before and got the blood for one test, but not enough for another.

So I took him back to the lab the next day, and the same thing that always happens, did.
They poked  him in each limb.
And my doc had written a note that they could try his feet and hands this time too.
The only time we have gotten blood from a vein in his arm, was a miracle!
Read about that here.

They have to bend back the hands and feet to find those veins and it's kinda painful.
And Bradley starting crying.
And I kept thinking how UNFAIR all this crap is.
And wondering how in the world I'm ever going to get a
3 year old Bradley to come to the lab with me.
And they got a little from a vein in his foot, that they have used in the hospital before.

When they were done I said "thanks!" and took Bradley out to the car and
I shed a little tear for my baby as I buckled him in.
He had the normal - "What was that for?" look on his face.
And I called Tom and cried with him and told him that it was not fair that Bradley had to do this.
And that this is no way for a child to have to live.

To have to do this EVERY MONTH!
Twice a month, if they don't get enough.
Three times a month, if another doctor orders another test.
Four times in a month, if the second set of tests come back that they didn't get enough blood.

And Tom said "It won't be this much when his growth slows."
And I said "yah, I guess..."

And I thought about how much worse it could be.
That I could be maintaining so many other, harder, conditions, right now.
And I felt grateful for the little life we do have.
It really is quite enjoyable at other times.

And this morning I thought about how STRONG our
Heavenly Father is that he WILLINGLY saw his son suffer.
That it was the plan that his son would suffer with the sins of the world.
That he would see his son bleed from every pore.
That he would be mocked and beaten and whipped and forced to wear a crown of thorns.
That his son's hands, wrists and feet would be nailed to a cross.
And that the weight of his body would hang from those nails.

Really my life is not too bad.
And those tiny needles in Bradley's arms are nothing compared to
 what Heavenly Father and Jesus went through so that Bradley
can someday  
have his perfect body!

And I'm grateful I know that :)

Wednesday, April 11, 2012

Prepare A Way

....for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.
Doctrine and Covenants 84:88

When I first saw Bradley, I felt so unprepared for him.
But I now know, looking back, I was prepared!
And he and I, have somehow made our way together.
And now, I know, that everything I have done in my life prepared me for him.
He is my defining moment.
I recently have become acquainted with a friend who's son has a rare chromosome syndrome.
He was delivered early because he was falling into the 10th percentile for size.
They had known early in the pregnancy that he had a cleft.
They had known he had a syndrome.
They were unsure what his challenges were going to be exactly, because his syndrome is so rare.
And they took him c-section.
Because they didn't know if he could handle the birth.
And after he was born his face was perfect looking.
Upon further inspection they realized he did not have a roof in his mouth.
And he was choking on his tongue.
And so they performed a tracheotomy within 12 hours of birth.

And as we all know, my baby was in the womb for 44 weeks.

And his doctors have looked at his pallet and said how high it is.
And remarked that it may have formed late.
I'm pretty sure EVERYTHING formed late with Bradley.

He takes extra time to grow outside of the womb too.

And I'm so grateful I let him take the extra time it took.
Most kid with syndromes have heart and lung problems.
And an OB will never admit that there is a possibility that inducing a woman is a bad thing.
But it can be.
And I think there are more effects from being induced than we understand at this moment.
Really inductions have only been happening for the last 20 years or so.
And they continue to happen, so that OBs can control the situation more.
But I am not convinced they are the right thing for women and babies.
And Bradley still has not convinced me of that.

For a time, some of Bradley's nurses and my
OB were telling us that Bradley's problems were a result of going overdue.
Never met a person who had a thyroid problem because they were overdue!
Never met someone who had neurological aspiration because they were overdue.
Never met someone who had seizures because they were overdue.
Being overdue is more a symptom than a cause, for Bradley.

Pretty sure your great grandma didn't have her babies on her due date!
I'm sure back then, a due date was more like a due-ish-about time.
Women said things like "I'm due in the Spring."

And a baby like Bradley would have died 100 years ago.
He would have died 50 years ago.
Genetics is changing.
There are more rare syndromes that children are
 living with because technology is keeping them alive!

Bradley and I have landed on uncharted territory.
And I hope that OB care, by the time I die, will have chilled out with the induction thing.
I have hope for a day when we understand that women
and babies benefit from letting the body do, what it does.
It is such a natural thing, if we let it be.

I will forever be grateful for the home birth movement.
At the very least, Bradley's home birth allowed me to bond with him in a way that I couldn't have,
had he been born in the hospital and then whisked away to the NICU.
After he was born we laid in bed together for two weeks and nursed.
Something that my friend and her son, never had the opportunity to do.

I will ALWAYS cherish those memories of Bradley and me.
And I think it was those memories, that helped him to live.