Wednesday, February 29, 2012

Gaining Challenges

Bradley saw his gastro yesterday.
He has gained 5oz in three weeks.
But the gastro wants him to gain more.
He's pretty below the curve.
Gastro said to start him on 27 calories and see if he'll gain more.
When Bradley was released from the hospital he gained very quickly and was almost on the curve.
But now at 7 months and only 13 lbs the Docs think he could get back closer to the charts.
He is a picky eater.
If he gets overfull his fundo prevents him from spitting up.
And so he is careful not to do so.
The gastro has said we could feed him through his tube.
This fundo is really screwing us up!
I have told the gastro all of this.
And he just listens and nods his head.

So near the end of the appointment yesterday I asked
"So you believe me when I tell you I'm feeding him, right?"
The docs eyes got big "YES! I have never thought you didn't!"
(that meant a lot to me)
This is the same gastro Bradley had when he was admitted to the PICU.
He's known Bradley almost as long as I have.

I was prepared to defend myself, because I have missed so many opportunities in the past.
I give him his medication 4 times a day.
If I didn't he would die.
And if I have the energy to medicate him, you know I feed him!
Also his helmet and glasses are proof that he's taken care of.
Do you know how many appointments it took me to get and maintain those?
More than a few!

So I asked the gastro why he doesn't gain like normal babies.
The gastro said he doesn't eat like a normal baby.
He said most babies his age take 6oz on average.
Bradley has to be starving to take 4oz.
He told me to keep trying. Keep offering.
Keep dumping a little down his tube after he eats.
We also ordered the pump back to try to use at night.
I hate weight problems.
HATE them!

Our temple recommends expired in December and
 we have been trying to get in to see the stake president for a bit.
Tonight we finally got in!
President Petersen had talked to me in the hall one day when Bradley was in the NICU.
He knew of our families challenges.

And tonight when I sat down in his office, he asked about our baby.
I told him Bradley was doing great.
I told him he had a helmet and glasses and that we were working on him holding up his head.
I told him he was 7 months now.
I told him that we were waiting to get in and see the
geneticist because they suspect he has a syndrome.

President Petersen asked how I was doing with all of this.
With a big smile on my face, I said I was doing "GREAT!"
He looked surprised.

I explained:
 "At first it was hard because I was in such shock.
But I'm starting to really come to terms with this.
If he is special, which, according to the docs is worst case;
 I'm lucky to have a child who spiritually has made it.
A child who never needs to be tested in this life and who is guaranteed salvation
 would be a wonderful thing to have.
Don't you think?"

The stake president said "Well that's a great way to look at it!"

I said "I'm not going to let this get me down President Petersen! I'M NOT!"

President Petersen said "I know Bradley is going to be a great blessing in your life!
And someday, you are going to be blessed, so much, because of him!"

Goosebumps went down my arms as a tear escaped my eye.
I told him I knew that was true!
And I said "He already is!"

Monday, February 27, 2012

The Special Dream

Yesterday we fasted for Bradley.
That he would be able to gain strength and control of his upper body.
I did really well.
I was hardly hungry.
By dinner time I was ready to eat;
but halfway through the meal I was stuffed.

This morning I woke up with the WORST stomach pains.
I thought I must have a stomach bug or something.
Bradley needed his blood drawn.
We can only do heel sticks and they can never get enough for the tests they need to do.
And so this is the 3rd time we've done it this month!
I had planned to take him in at 7am.
But I couldn't hardly walk my stomach hurt so bad.
So Tom took him for me. (Thankgoodness for Tom!)

I laid in the bed and tried to sleep, but my stomach hurt so bad, I could not.
When Tom got home, an hour later, I started crying when I thought about him going to work.
I told him I could not take care of the babies today without him.
And he called in.
He turned off the lights and shut the door and I finally fell asleep.

I had a dream that I came down to check on Tom and Bradley and Bradley was crawling!
He had the body strength that I so badly want for him!
And suddenly before my eyes he grew into a man.
He was short for a man.
We saw eye to eye.
I was looking at his face, which still looked young and happy and chubby.
I hugged him.
He was quite chubby.
I was looking at him. At his face.
He looked different than a normal full grown man.
Like he was a special person.
And he had a big crooked smile on his face.
And as I hugged him again, I whispered in his ear how much I loved him.
And I could feel how happy he was.
Even though he looked nothing like a typical grown man,
 I knew he was happy and

This whole experience of having this special needs child is
teaching me so many different wonderful things.
But most of all, that special people are special because they ARE!
They are happy.
They are never tempted.
They see God.
They have beautiful pure souls.

In the beginning I was so sad when the doctors said he might be special.
But I am not anymore!
And I'm as excited about his future as I am about any of my other kid's futures.
Even though I'm pretty sure Jacob's adult life will be different than Bradley's;
I'm still excited to see it!

Thursday, February 23, 2012

In Disguise

I love going out with Bradley looking like this.
Everyone asks.

On Monday we were at the park.
Maddy had found a friend.
The friend was asking Maddy about her siblings.
And Maddy came over to show her new friend her baby brother Bradley.
The friend stared for a bit.
Then she asked me "What is he?"
I said "What do you mean?"
She pointed to his helmet and asked again "What is he?"
She thought that we had for some reason dressed him up.
Like in a Halloween costume or a play dress up helmet.
I quietly chuckled to myself and told her this helmet was to fix his head.
She still looked puzzled and Maddy said "They think he has a medical syndrome."
I continued listening to see what Maddy would say.
"He has a g-tube too!"
Maddy opened his pj's.
Her new friend peered between the buttons and gasped.
The friend asked,
"Did it hurt when he got that?"
"It did." I told her, "but it doesn't hurt him anymore."

Then the girls turned and ran off to play together.

Getting that g-tube was one of the most painful things I have ever been through.

I will never forget the weekend before he got it and the feelings
I was having about the sad, broken baby, I had been given.
And when he came out of surgery and I came face to face with it.
And as my milk dried up.

But I still felt God around me.
And I knew that he had NOT left me to struggle alone.
And there were angels all around us both, at that time.
We were some how in a holy place, even through those struggles.

"We are not alone in our little prisons here.
When suffering, we may in fact be nearer to God than we’ve ever been in our entire lives.
That knowledge can turn every such situation into a would-be temple.
Regarding our earthly journey, the Lord has promised, “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”. That is an everlasting declaration of God’s love and care for us, including—and perhaps especially—in times of trouble."
Jeffery R. Holland

Friday, February 17, 2012

A Vision

Today I'm so grateful for eyeglasses.
I never realized what a big difference they could make, until I had a child who could not see me.

 I don't know if I have ever seen this much of his eyes.

We picked up his glasses today and then took them with us to his
helmet doc to have her fit his helmet WITH his glasses.

The helmet doc is brilliant!
Bradley lens size doesn't match the typical length from the face to the back of the ears.
And she said she couldn't put them under his helmet but that she thought she could put them on top.
And she made velcro fasteners on the outside of his helmet to hold his glasses in place.
And she came to show me what she had done.
She asked if she could take pictures, of what she had fashioned for future reference,.
I said "YES!"
And when she was done, she turned her phone around for me to see.
And I burst into tears and told her "THANK YOU!"

And I cried the whole way home.

I got home and shook some toys in front of his face and I could see that he saw them.
And then I fed him a bottle, and like my other babies he stared at my face the entire time!
And I cannot stop looking at him!
He sees me.

They already are :)
And I'm so grateful for eyeglasses.

Monday, February 13, 2012

I'm Still Looking Up

Bradley had his MRI today.
He's a baby so they had to sedate him because of the noise the machine makes
and they needed him to hold VERY still.
I warned them about his veins.
And the anaesthesiologist said he had already had three pediatric appointments this morning.
He used a wide tourniquet.
He found some veins.
He poked them and poked them.
And I learned something this time that I didn't know!
When they give a patient an IV they know they have gotten a vein
 when the blood flows out into the needle.
And Bradley's blood doesn't flow.
While he was poking him, Bradley was screaming, and I felt like leaving!
I have always left before when they have done crap to him.
But today I just kept thinking, "It's okay, this is just his earth stuff."
Hearing my Mom's voice in my head was a comfort.
And I also kept thinking "I cannot walk out on Bradley; I have to be here for him, and be strong!"
And even though he was crying, he didn't give us too much trouble for how much he was being poked.
Six pokes later, the anaesthesiologist calmly asked "His blood doesn't flow?"
I said "Yes"
So the anaesthesiologist said "lets try it" and hooked up some fluids.
The nurse said "IT'S DRIPPING!"
And we all looked down at his arm, which looked fine like the fluid was going into his vein.
We watched it for a minute longer and then the anaesthesiologist started the medication.
Within ten seconds Bradley calmed and closed his eyes like we knew the medicine would do.
The IV worked!

And on the way home I heard this song:

When I look into your eyes
It's like watching the night sky
Or a beautiful sunrise
There's so much they hold
And just like them old stars
I see that you've come so far
To be right where you are
How old is your soul?

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

'Cause even the stars they burn
Some even fall to the earth
We've got a lot to learn
God knows we're worth it
No, I won't give up

I don't wanna be someone who walks away so easily
I'm here to stay and make the difference that I can make
Our differences they do a lot to teach us how to use
The tools and gifts we got yeah, we got a lot at stake
And in the end, you're still my friend at least we did intend
For us to work we didn't break, we didn't burn
We had to learn how to bend without the world caving in
I had to learn what I've got, and what I'm not
And who I am

I won't give up on us (no I'm not giving up)
God knows I'm tough enough (I am tough, I am loved)
We've got a lot to learn (we're alive, we are loved)
God knows we're worth it (and we're worth it)

I won't give up on us
Even if the skies get rough
I'm giving you all my love
I'm still looking up

 (Jason Mraz)

As much as I wanted to, it was good I didn't give up and leave.
Bradley needs me for more than just cuddling and food!
I am his helper in this life,
and I'm still amazed God saw fit to give HIM to ME!
Sometimes I feel so unworthy!

Friday, February 10, 2012

The Hill At The Park

Today the weather was B.E.A.U.T.I.F.U.L!
I love it when it's 70 degrees in February!
In order to rid ourselves of our winter funk, we went to the park.
We have a cement path at the park and the kids love to bring their scooters and bikes.

When we got there, there were tons of kids on the playground and my kids like their space,
so we dodged the playground and went straight to scooting.
This was Charlotte's first real time on the tyke bike and not in the stroller.
I was amazed at how well she could pedal.
We made our way around the park and then we got to the part of the path
 where the path goes down a very steep hill.
I was prepped for what I anticipated happening to Charlotte.
Like the two other children before her, I thought she would get going down the hill
 and vear off the path and crash into the grass.
But instead she surprised me.
She felt the bike gaining speed and she put out her feet to stop herself.
The girl has instincts.
And the fact that she didn't feel the speed and freak out and lose control, amazes me.

She did better than, I would have done, MY first time!

And through out the whole ordeal with Bradley I had nurses telling me that it was because
 Bradley was born at home and overdue that he was having health problems.
And I knew they were wrong.
Because I had had Charlotte at home, overdue, and she was a brilliant, thriving child with instincts.
She was crawling and walking early.
She grew like crazy and ate less than Jacob had.
She has always been a child who performs well above her age and she just does that.
I certainly have had nothing to do with that.
(I'm a self proclaimed under-achiever!)

And that is PROOF that nothing that we do as Mothers or Fathers makes our children any one way.
Don't you think that if I could get Bradley to do the things Charlotte can, I would?

Bradley is helping me stop internalizing everything my children do.
He really does have a plan and he is helping me to understand mine better.  

Thursday, February 9, 2012

Helmet Head

 We left the orthotist with Bradley's new camo helmet today.
And he loved it so much, he fell asleep on the way home!
The orthotist said that the mother before me had been crying about
her poor baby having to wear a helmet to fix her daughter's head.
I can understand that.
But I'm not sad about the helmet at all.
I was sadder when he got his g-tube.

 And before the orthotist we had an appointment to be fitted for his glasses.
And the doctor at that appointment said that Bradley had some odd proportions.
She said that his head was narrow
and from his ears to his eyes was short
and that even her newborn's glasses wouldn't fit him.
She bawked at the fact that he wasn't sitting up yet
and said that if he just lays and rolls all the time glasses,
flexable or not,
will not stay on his face.
And I told her I needed him to have them so that he could see me when we cuddle.
And she said I could never cuddle a baby or anyone who had glasses on.
She really made me angry.
And I don't think I'll be going back to her.
We will find someone else to fit Bradley for glasses.
Waste of my time.

He kept the helmet on for four hours today.
He started fussing toward the end.
Tomorrow will be longer.
And the next day will be at night too.

But I'm really happy about the helmet, it's adorable and I know it's going to make a difference.

Monday, February 6, 2012

Eye See

Last week, my oldest had a reason to see a doctor.
She was running to the bathroom at school,
had turned to look behind her,
and ran into an opening door.
Our school was built in 1978 and the doors are huge and metal.
And the speed at which Maddy was running, created a force when she hit the door,
 that sent her straight backwards to the ground and onto her bottom.
She also bumped the back of her head on a pole which supported an awning.
Quite the little accident.
And the person who was opening, the door Maddy ran into, was a 7 month pregnant teacher.
The poor teacher and Maddy were traumatized.
And luckily another congregation of teachers, found the disoriented two and lead them to the office.
The side of Maddy's face, near her eye had been scraped and it was stinging and bleeding.
She was wailing like she does.
The nurse looked at it and realized it was only scraped.
And they called me.
I basically ran to the school.
When I got there I yelled at the staff, pulled her under my wing and whisked her back home to safety.
As we drove home (okay, I didn't run) I was worrying about possible head injuries,
when Maddy spoke up and said "BUT MOM, I WANT TO GO TO ACTIVITY DAYS TONIGHT!"
She couldn't be too hurt if she was worried about a social activity.
When we got home, the MIL was here, and looked and said she thought Maddy was okay.
She did go to activity days that night, and mutual with me, too.

The next morning, to our surprise, the eye was swollen shut!
I called the school and told them she'd be going to the doctor.
We went in at 11am and the doctor said she was worried about a possible fracture.
She sent us to an imaging center for a CT scan.
Basically it's a doughnut that takes a 3D X-ray.
And they saw no fracture.

Through out the whole two day ordeal, I kept thinking about how if this had happened before Bradley
I would have been trippin' out!
But Bradley has given me so much perspective.
Yada, yada, yada...

And she is no longer wearing the eye patch I made her.
Really it was to cover her swollen-shut eye, and once the swelling went down,
she was back to her normal un-selfconcious, un-Quazimoto-like self.

Today Bradley had an eye appointment.
He's my only child who has ever seen an eye doctor.
And the opthamologist saw what I have been telling every specialist he goes to.
He saw that Bradley has vision, it is just not very exact and focused.
So we dilated his pupils to get a better look and found that
Bradley cannot see things that are close to him.

Things like my face when we are snuggling.
He has NEVER seen it clearly.


And the doctor said Bradley can get glasses and wrote a prescription.
And we are going to see a doctor that fits infants for glasses later.
They are a rubber, wrap around type.
And I asked if Bradley would just wear them when he played and the opthamolgist said,
"NO, all the time."

And the opthamologist said that we wanted to give Bradley every possibility of developing
like a normal baby and "If we can fix his vision, why not fix it?"

I had NO CLUE babies could be tested to see what their vision prescriptions are.
And I cannot wait to put the glasses on him and see if he will FINALLY focus on my face.
I feel like Bradley has been looking through me.
And I cannot wait to see him, see me.

Sunday, February 5, 2012

His Last Creation

Today I taught young women's. The lesson was titled "Finding Joy Now."

I read the lesson and thought about how unsatisfied young women can be with their lives.
How unsatisfied they can feel about themselves and their bodies.

And I was thinking about everything that I have learned about my body these last few months.
How miraculous the body IS!
How wonderfully it functions and how beautiful it is!

And I've been thinking a lot about the creative process. And how things evolve.

How when you create you continue to improve upon original designs and plans.

And I've been thinking about my flowers and that they are beautiful,
BUT how they pale in comparison to Heavenly Father's flowers.

First of all my flowers don't reproduce. Or decompose and fertilize. Nor do they smell beautiful.

And ALL of his creations are so magnificent!

And do you know what he created last? That's right!


And WOMEN were the very last of ALL of his creations.
We are the last beings he created!
We need to remember this when we criticize ourselves in the mirror and scrutinize our looks.
We are his most divine and most perfected creations.

WE are!

Wednesday, February 1, 2012

Intertwined Souls

Tom and I had our yearly check-ups on Monday.
Neither of us have had one in our ten years of marriage.
But our insurance gives us cash toward our deductible and so,
this year, because of our medical bills, we went!
Tom and I were each asked about our medical histories.
No surgeries.
No diseases.
No allergies.
No, no, no, no, no.
Same answers we have always given.
And later I told Tom that Bradley will someday have a LONG history to give to his docs.
And Tom said "Yeah, THREE blood transfusions!"
It took me a second to remember the blood transfusions...
And then the memories spilled into my mind and I started to cry.

And Tom said "But he's okay now Mary!"
And I know he is.

And I'm kinda glad those memories are fading.


Bradley went to the Endocrinologist today.
His labs weren't there yet.
And I apologized to the doc.
He said it was okay and asked how Bradley was doing.
I reported that he's only gained half a pound since November
and that we have now put him on 24 calorie formula.
I had learned how to mix 24 calories in the NICU out of the powder.
And his gastro has confirmed my memory and we are seeing if he'll gain on it.

I told him about Bradley's helmet and how the
 PT and the orthotist said it will help him to hold up his head.

We talked about his meds.
He said when the labs are back if we need to up it, he will call in the script.

I told him that we are one MRI away from seeing the geneticist too.

As the endocrinologist was finishing his appointment he said,
"You are doing a good job!"
I burst into tears.
He hugged me.
Then he said, "Bradley was meant to be your Son."

I told him I KNEW that.

He said that Buddhist philosophy teaches that spirits
like Bradley did something in a former life that gave them these challenges.
And that he came to my family because of something I had done as well,
and that our souls were intertwined and that we were meant to be together in this life.

I told him that I knew all of that was true.

And I left thinking about our intertwined souls.
How Bradley is intertwined with SO MANY PEOPLE.
And how God told me that Bradley would do God's will.
And how Bradley IS doing God's will.
One answered prayer at a time.
His life has been weaved into all of ours and he is pulling us ALL closer to eachother.
And closer to God.