Thursday, March 29, 2012

Picture Perfect

When we got home from the NICU one of my biggest worries
was what our future family pictures were going to look like.

But I have been given my own personal Savior, who has saved me from myself.
And he has taught me that some of the most beautiful things in this world cannot be seen.

So grateful for the picture that I was given.
A year ago I was not imagining this.
But I LOVE how it has all turned out :)

Monday, March 26, 2012

Find Our Legs

We have been trying to apply for help from the government.
Our insurance has a very high deductible and we could be paying $10,000.00 in
medical bills, every year for Bradley, with out the help.
When we were released from the NICU, the social workers
said we were auto-eligible for disability because of the g-tube.
But the US Government is giving us the run-around.
We received back our application last week and it said they needed our
 birth certificates to prove our citizenship.
Tom's Mom brought him a folder the next day with his important documents.
Amoung other things, the original copy of his patriarchal blessing was inside the folder.

Last night Tom sat down with me and showed me what was in the folder.
His pediatric shot record.
His birth certificate.
And the blessing.
He read me the part about me and the kids.
It's such a special part of his blessing.
About a paragraph long.
It says that I'm a beautiful woman.
It calls our children "choice spirit children"
It also says that they'll be given a chance at mortality.

I told Tom I knew that the patriarch saw Bradley in his
 hospital bed when he was giving Tom that blessing, 15 years ago.
Tom thinks so too.
Tom told me that we were meant to be together.
He got tears in his eyes as he talked about how I had come to
 Las Vegas to meet him, so we could have all these children.
 Bradley too.
He said he knew we were meant to be.
I told him, I knew that too. 

I was meant to be Bradley's Mother, long before I was created.
And I came to the perfect parents who prepared me for these challenges.
Who recognized I was tough.
Who fostered that in me.
Who taught me to work and to embrace things that are hard.
And Tom was meant to be his Father.
He has a nurturing soul.
And he has helped me the most through this trial and

At PT today, the boy triplet Joey, had two physical therapists working with him.
He had his walker and was using it to walk.
They had tied his legs with long yellow strips of fabric.
One therapist was in front of him with toys telling him to walk to her.
The other therapist was behind him, pulling on the yellow strips of fabric,
creating resistance for his legs.
They told him he could.
Yet they had tied his legs so he could not.

And I think this is what Heavenly Father does to us.
Sometimes he ties us in ways that may seem mean and cruel.
Yet he's in front of us yelling:
"You can do this! You can!"

And we've just got to keep going. And trying. And not cry.
And eventually we will find our legs.
And they will be stronger than we ever knew they could be.

Thursday, March 22, 2012

Larry The Blood Guy

When we were  wrapping up the appointment with the geneticist yesterday,
the reality of where I was going to get Bradley's blood work done hit me.
Dr. Morris needs to rule out more things to pin point the syndrome through blood tests.
And so I asked her if these labs could be done with a heel stick.
She said one could and one could not.
I told her how hard he was to draw. That his blood doesn't flow.
 That the only people who can get him are nurses.
I asked her to admit us to the ER.

She told me to try first; to try find someone who could do it.

I came home and mulled it over.
And prayed about it.

And I thought about all kinds of options.
About going to the ER on my own.
Going to the pediatrican and seeing if they could flush an IV line.
Even asking a phlebotomist friend if she would flush an IV line at home with us,
and purchasing those IV lines online.

And then the answer came:
Go to your regular lab, where he gets his monthly heel sticks
 and have the phlebotomist, I do not like, do it.

That was not an answer I wanted.

So this morning I came down and told Tom I was going to do his blood this morning.
That I was going to go to the regular lab and "try".
That I had some other ideas of how we could get blood out of him,
but that I would "try" this first.

And I showered and dressed and the prompting came that
I didn't have time for my hair and that I needed to go NOW!

So I skipped the hair thing and drove down.
And the place was empty.
And the phlebotomist I love, took my papers and said we'd "try".

And then she yelled "LARRY!"
(which is the one I was not fond of)
"Bradley, that hard kid is here and we need even more blood this time!"

She kept calling his name and he did not come.
So she took us back.
And she got out SIX big vials.
And my heart sunk when I counted them.
And then I remembered that God had said Larry would get it.

And Larry finally came in and his eyes got big when he saw us and the vials too.


And he said nothing and got out the butterfly needle and tourniquet.

And as soon as the needle hit the vein, blood came flying out!
And Larry was careful not to lose it. If he moved it ever so slightly it would stop.
And he filled almost all the vials.
And I kept telling him that I had been praying and he was the one!

The last vial was a little short and the spirit told me it would be okay
 and that the lab could be careful with it and stretch it out.
So I told the girl who was entering the blood on the computer
 and she marked it as "HARD DRAW".

Sometimes life is NOT fair!
But I am finding that the more UNfair it is, the more God is willing to help;
I just have to ask.
God has prepared a way for Bradley and me and for all of us.
And all we have to do is ask.

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.

Sunday, March 18, 2012


Sometimes the tiniest thing can cause ripples that span an entire body of water.

 Bradley has created ripples in my heart that I would have never otherwise felt.

 And I know that he is causing ripples in everyone's life around him.

His life's work is not complete.
He has and will touch many more.
Heavenly Father has told me so.
And I am privileged to be his Mother and to help him in his ways.

  Now ye may suppose that this is foolishness in me;
 but behold I say unto you, that by small and simple things are great things brought to pass;
and small means in many instances doth confound the wise.
Alma 37:6

Wednesday, March 14, 2012

St George and Seizures

Sometimes it is nice to live in a naive bliss, isn't it?

When I was a kid, my Mom held the calling of camp director often.
In March, she and another sister, would go and "scout-out" girls camps.
They would make a day of it.
It was a whole day's trip to travel 2-3 hours from home and return as well.
She'd return tired, sunburned, and with a diet coke in her hands.
She would tell us what she had seen.
She would tell us how excited she was to plan camp and how they had found a perfect spot!
But now that I'm an adult, it seems the calling of camp director has somehow eluded me.

 And so this past weekend, I had planned a trip to go with our
ward's camp director and show her the perfect spot.
Tom's Aunt owns a little piece of property near Pine Valley which makes a perfect group camp spot.
But the trip did not go as planned!
We were late leaving Las Vegas. And we had to stop and feed Bradley and the kids.
And the girls camp director made it to the
meeting spot before I did and I told her to go on without me.

But it was okay, I would visit family instead.
 Tom's Grandma was turning 85 and we haven't see her since last year!
We thought she'd like to meet Bradley :)
When we got to Tom's aunts house, I took Bradley out of his car seat to show him off,
And as I pulled his tiny body from the seat,
 his eyes were doing funny things and his body was ridgid and limp all at the same time.
I looked at his lips which were blue and said to Tom
"Is he having a seizure?"
Tom and I made eye contact and tried not to draw attention to ourselves.
I took off his helmet. He came to quickly.
The rest of the afternoon, I watched him do it three more times.
And I thought about going to the emergency room when we got back to town
but felt like I was too far from my hospital to do much about it now.
Now looking back on it, I should have said more.
I should have taken Bradley home as soon as I saw the first one.

As we were getting ready to leave, I left to use the restroom one last time.
Tom was packing the kids and getting them ready.
When I returned, I could not believe my eyes.
Bradley was laying flat on his back. His lips were blue, His toes were curling.
My ears were ringing.
I could tell he was out of air.
It lasted for an eternity.
And then it was over and he lay limp on the floor.
Tom's Dad and Tom gave Bradley a blessing.
I called the pediatrician who said to go to the closest hospital because they were continuous.
We left the kids with Tom's Mom and drove as fast as we could to the other side of St. George.
When we got there we signed in with a volunteer
who said to come get him if Bradley had another seizure.

Sure enough, another hit.
And they let us back.
And I told the ER Doc our story.
All the crap Bradley has gone through.
And I gave him all of Bradley's Doc's numbers.
And he called them.
And Bradley had another.
And they started trying to get an IV into him.
They poked him twice in each limb.
And finally I told them that I didn't want all of his sites blown
because I was planning on going back to Vegas.
And I told them I would fly in helicopter or plane.
And they gave him phenobarbital through his g-tube!!!!
He wouldn't have otherwise got the meds that stopped the seizures that were turning him blue.

And they loaded him into his car seat on oxygen in case another came and turned him blue.

And they loaded him on a gurney, and put us on an ambulance to the airport.

And when we got to the airport, Bradley had a private plane waiting to take him to Vegas.
And I told him that lots of people take planes to Vegas and that it would be alright.

And they put him in a special place on the plane where they could monitor his vitals.
And I prayed they wouldn't really have to.

And as we flew into vegas, I saw the strip and my heart swelled with hope.
I had let go of any, just in case.
And I looked out the opposite window of the plane and saw the temple.
And I knew it would be okay no matter what!
And we rode in another ambulance to Sunrise.

And the entrance of Sunrise had never looked better!
And I was so grateful to be home :)

He was admitted and I stayed in his room with him.
And the neurologist came in and said we REALLY needed an appointment with the geneticist.
And I told him I was waiting on his office giving the results of the MRI and the EEG to Dr. Morris.
And he remembered the appointment Bradley had with him two months ago.
And he said that he would send those results on Monday, first thing.

And Bradley was released on phenobarbital to control the seizures.

And I'm grateful to be home.
And we have an appointment with the geneticist, NEXT WEEK!

Friday, March 9, 2012


 In the last few months I have been bombarded with information.
TONS actually.
I see so many doctors. I have so many friends.
And I understand that everyone is trying to help.
And sometimes the help is VERY helpful.

But with all the info I'm getting, I'm sometimes confused as to what I should really do.

And I go to church.
And some of the best answers have come from there!

One day I taught a lesson to my Young Women and the lesson posed the question (and answered it):

How can we lose the ability to feel the promptings of the Holy Ghost?
 (By ignoring them, by refusing to repent, by listening more to what others say.)

Stuck out like a sore thumb to me. I read it over and over. I knew that little bit was for me.
Especially with my life right now.

And then I heard the following story.
I have heard this story before but this time was different!

Many of us have had experiences with the sweet power of prayer.
 One of mine was shared with a stake patriarch from southern Utah. 
This saintly soul suffered much because of a failing heart.
He pleaded for help, thinking that his condition resulted
from a damaged but repairable valve in his heart.

Extensive evaluation revealed that he had two faulty valves.
While one could be helped surgically, the other could not.
Thus, an operation was not advised. He received this news with deep disappointment.
Subsequent visits ended with the same advice.
Finally, in desperation, he spoke to me with considerable emotion:
“Dr. Nelson, I have prayed for help and have been directed to you.
The Lord will not reveal to me how to repair that second valve, but He can reveal it to you.
Your mind is so prepared.
If you will operate upon me, the Lord will make it known to you what to do.
Please perform the operation that I need, and pray for the help that you need.”

His great faith had a profound effect upon me.
How could I turn him away again?
Following a fervent prayer together, I agreed to try.
In preparing for that fateful day, I prayed over and over again,
but still did not know what to do for his leaking tricuspid valve.
Even as the operation commenced, my assistant asked,
“What are you going to do for that?”
I said, “I do not know.”

We began the operation.
After relieving the obstruction of the first valve, we exposed the second valve.
We found it to be intact but so badly dilated that it could no longer function as it should.
While examining this valve, a message was distinctly impressed upon my mind:
 Reduce the circumference of the ring.
 I announced that message to my assistant.
“The valve tissue will be sufficient if we can effectively reduce the ring toward its normal size.”

But how?
We could not apply a belt as one would use to tighten the waist of oversized trousers.
We could not squeeze with a strap as one would cinch a saddle on a horse.
Then a picture came vividly to my mind, showing how stitches could be placed—to make a pleat here and a tuck there—to accomplish the desired objective.
I still remember that mental image—complete with dotted lines where sutures should be placed.
The repair was completed as diagrammed in my mind.
We tested the valve and found the leak to be reduced remarkably.
My assistant said, “It’s a miracle.”

I responded, “It’s an answer to prayer.”

-Russell M. Nelson

If you have been reading, you know we are struggling, trying to get Bradley to gain some weight.
And the docs just keep upping the calories.
I even got back the pump to pump formula into his tummy thru his g-tube at night.
YOU thought you forced your kids to eat? pshw!

And he has gained a little, but it has been such a struggle!
Bradley's top of his stomach was tightened and he cannot throw up. He wretches instead.
And I have felt like he had a blockage or a twist or something because NOTHING goes down.
But the gastro has reassured me he does not.
And on Sunday I fasted for him. That he would gain some weight.
And on Monday he got sick.
And he's had an unexplained, reoccurring cold since he came home 6 months ago.
And I've asked his pulmonologist about allergies and he has quickly answered
"He's too young for airborn allergies! Could be food allergies though."

And Bradley has been throwing up one bottle a day for two weeks.
And it is violent when he does.
And his ability to suck has gotten slower and slower.
And yesterday, all day, he threw up.
And no one else has been sick.
Not even a cold or earache like the doctors say Bradley has.
And all he would keep down yesterday was pedialyte.
Finally about 3pm, I was so tired of cleaning up throw up,
 I said a prayer and asked to know why Bradley was throwing up.
And quickly I got a response.
And it was to try soy formula.
So the kids and I went down to the store.
And I mulled over which to buy.
There are so many now.
And the spirit came to me and said, "I've told you which to buy."
And I picked it up and then I put it back.
And I thought about getting small cans of different kinds to try.
AND AGAIN, the words came into my mind "I'VE TOLD YOU WHICH TO BUY!"

So I picked up the biggest can I could and thought "Okay. We will see!"

And I came home and mixed the bottle to 27 calories of soy formula.
And I put it in his mouth.
And he chugged it.
He ate three ounces. Something he has not done in months.

And I opened his tube to vent him and water came up.
Only chalky, white formula.
He was digesting it!!!

And he's slept all night with the pump running. I didn't have to turn it off. He didn't wretch.
And when the pump had been done an hour, he woke and let me know that he was hungry.
And I fed him a whole bottle. And now he is asleep.

Why do we resist the promptings that come?
Why do we try to prove them?
If we could just trust in our Father's advice, life would be so much simpler.
If we trusted him more, we would seek him more.

And this whole throwing up thing, caused me to change his formula.
And I know he's going to gain weight now.
It was an answer to prayer :)

Tuesday, March 6, 2012

Answered Prayers

Yesterday Bradley had physical therapy in the morning.
It was 70 degrees in Vegas.
It's getting warmer.
And his helmet makes him sweat.
He was warm all day and fussy.
But I thought it was the weather and the helmet making him warm.

 Later in the afternoon, when all the kids were home,
 I was sitting in our chair feeding Bradley through his tube.
I was pouring some formula in and he was arching his back and at first I thought I had overfilled him.
As I looked at his eyes, I noticed that he was looking up.
Actually REALLY far up.
Then I looked at his hands and they were shaking slightly.
I said"BRADLEY?"
He didn't look at me.
I had Madeleine come and look.
I asked her if Bradley looked different.
She said he did.
He kept doing it and wouldn't respond to my voice.
His mouth was open wide and he was breathing.
I called Tom and told him I thought Bradley was having a seizure.

Tom instantly said "I'll come home!"
I hung up and the kids were gone. I yelled for Maddy.
She came in and said Jacob and her were saying a prayer for Bradley.
The tremors stopped.

I put him on the bed and felt his skin.
It was so hot!
I put the thermometer under his arm and saw the numbers jump to 102 and climbed.
I started to undress him and removed his helmet.
Right after I got his helmet off he started throwing up.
He threw up everything I had fed him.

When he was done I gave him some Tylenol.
We called the pediatrician who said, because of Bradley's history, we had to go to the hospital.
 I didn't want to!
I always have had to leave him when I've taken him before.
But when Tom got home, we ate and packed a small bag and reluctantly drove down there.
He was acting fine by this point. But we had to have the ER check him out.

Sunrise hospital is in such a bad area of town.
And I feared I would have to leave my baby again.
And I thought about all the nights that I had left him in that hospital in the crappy part of town.
And all the nights I worried about him away from me.
And all the nights I left him, not knowing what was wrong with him.
I wondered if it would be a similar night.

Thankfully it was NOT!
They drew blood and took a urine sample.
They swabbed his nose for RSV and influenza.
And everything came back negative.
They even checked his calcium levels which were in the normal range.
Doctor said she thought he had had a febrile seizure.
She said if a fever comes on suddenly that children 6 months to 6 years can get them.
She said "typical" children have them and that if we asked around
someone in our family has probably had them.
(no one has)
We were released on Tylenol and ibuprofen.

When we got home I tucked him into his bed and he fell right asleep.
I came down did the dishes and some laundry.
And I was in bed by midnight.

This morning we talked with the kids and told them about what the doctor had said.
Jacob found this book and showed Tom what Bradley's eyes looked like during the seizure.

(Jake's a smart kid)
And I told the kids that it was a good thing they had said a prayer for Bradley.
That it had helped him to be okay.
Prayer IS powerful!
And I know Bradley's life a direct result of answered prayer.
When he was close to death, he had people everywhere praying for him.
His name was put on the prayer roles in the temples over 50 times
He is a miracle of answered prayers.
And every time I have a prayer for him, it usually gets better.
He is my little litmus paper for prayer.

Prayer CAN change the night to day.
Prayer DOES help the weary.
SO Don't forget to pray!