If I only wasn't sick

Sung to "If I Only Had a Brain" from the Wizard of Oz)

(Caleb)
I could wile away the hours
Conferrin' with the doctors
Consultin' with the rain..
And my head I'd be scratchin'
While my thoughts were busy hatchin'
If I only wasn't sick

I'd unravel all the riddles
For any individuals
That help with all my pains.

(Mom)
With the breath's you'd be breathin'
Oh your chest could be done heavin'
If you only weren't sick

(Caleb)
Wish I- could tell you why
My lungs still hurt some more.
I'd breath deep just like I've never breathed before.
And then I'd sit and breath some more.

I hope I'm done with needles
blood work and urine samples
and X rays of my chest.
My bladder's feeling icky
and my lungs are being tricky
and I'm needing lots of rest.

But...

I'll still wink and be Merry
Life is still a ding-a-derry
Even when I'm feeling sick.

* We've been in and out of the doctor/hospital/ and pharmacy for the past week or so. We're still waiting for our latest test results to determine what else needs to be done to help Caleb's lungs feel better. We'll either try another round of antibiotics, or he'll need to be hospitalized to receive the right treatment.
Luckily, Caleb's bladder infection has finally cleared up. Unfortunately, it looks like we're are going to start using catheters to help prevent them from coming back. I guess I'll be adding a new skill to my repertoire! Any thing for you, Caleb. xo

Cool at school

Caleb insisted on wearing my shades when we were at Matthew's 2nd grade program.
He must already think he's too cool for school.

Okay, he was sleeping and I couldn't resist-
mums the word.

ER groupies

This past week Caleb and I have been ER groupies. We've been twice in the last 5 days.

Last week Caleb came down with pneumonia and a urinary tract infection. He was put on an antibiotic, but once his urine cultures came back, we found out that the UTI was resistant to the antibiotic and we'd need to go the ER for IV antibiotics. After a few hours in the ER, we decided to do inter muscular shots because the nurse was having a hard time finding a vein under all of Caleb's fluff. Since we opted for shots, I asked them if I could learn how to do them and continue them at home rather than bringing him in for the next 7 days.

So, since Sunday I've been giving Caleb a shot every night. I have to say, even though I do all kinds of nurse-y things with Caleb, (I've even placed an NJ tube-- my claim to fame in the PICU) giving him shots has been hard for me. But even though it's hard, I'm still glad I've been able to learn a new skill and keep Caleb at home.

About 24 hours after Caleb's first shot, he started to become extremely agitated. This went on for a couple of days until I finally brought him to my pediatrician. He asked us to take him to the ER at Primary Children's to make sure the shots were working because Caleb was obviously miserable. After a whole night in the ER, tests showed that his UTI was under control, the pneumonia was improving , and his blood work was in normal range. Doctors were puzzled as to why Caleb was so agitated, but we were able to come home the next morning.

Now, we're just keeping Caleb as comfortable as we can. I've been alternating Tylenol and Motrin with 2 ml's of lorazapam every 4 hours, and it's barely taken the edge off. Poor boy. Luckily- tomorrow is our last day of antibiotics, and I'll bet when the medicine is out of his system, he'll be back to his sweet little self!

Today

Oh sweet Ben. We will miss you so.

We have faith.
We know where you are.
We know you are happy.
But today,
we are just so sad.
Our hearts ache
to know it will be a while
until we meet again.
It is an honor
to have you
for our celestial friend.
We love you forever.

Make a Smilebox scrapbook

Scrabble

"Has anyone seen the I?"

A close shave

Caleb got to play with shaving cream with his vision therapist this week!
He smelled after-shave fresh for the rest of the day!

Puppets

The other day I heard Mitchell in Caleb's room. He had pulled in all of his puppets and was helping Caleb play with them. It's moments like this when I know that one of the greatest gifts I will ever give my children- is each other.

A week of Appointments

Caleb had a busy week with follow up appointments at

Primary Children's Hospital.

One of his appointment days started with a little adventure: We left for the hospital at 6:45 AM, and by the time we got there, Caleb was smelling a little bit suspicious. I took him to the bathroom to check his diaper and sure enough the was an explosion clear up his whole back! Luckily I keep a spare pair of pants for him in the car... but no spare shirt. So after about 20 minutes, 200 wipes, and mental note to lysol the heck out of his stoller... I wheeled Caleb into the office-shirtless! Fortunately a nurse found him a fluffy white sweatshirt that made him look like a cute little marshmallow!

CT Scan: The results showed no change, and his head growth is still in check.
Neuro surgery: His shunt still looks good! We are so thankful that he hasn't needed any revisions!
Neurology: His seizures are under control, and we we may try to wean him off Baclefan.
Pulmonology: They suggested some medications to consider if Caleb has excess secretions and his wheezing worsens (using singular along with his flo vent, and using tobi meds) But for now we all feel comfortable with what we're already doing. We also increased the tidal volume on his ventilator to 145 to accommodate his growth.
ENT: Caleb's trach site is awesome! The doctor had some tips to help with Caleb's oozing ears. We're trying an anti fungal for yeast and are finishing an antibiotic to help with the infection.
Rehab Doctor: The curvature in Caleb's spine is gradually increasing, but we are just going to keep watching it. His G tube site looks great. We'll keep using DAFOs for his ankles and will keep trying to find a bath chair
Blood work: His nutrition looks good, his phenobarb level is in normal range, his thyroid was low so we're increasing his medication, and his sodium was a bit high .
Follow up: We were referred to endocrinology for his sodium levels, thyroid, and body temperature irregularities.

Each doctor was so happy with how much better Caleb looked, and Caleb gave each one of them a heavenly smile to say thanks- even the lady who gave him his pokes.

Nick Name

We have a lot of nick names in our family.
I nick name the kids with ie's:
Joshie, Mattie, Mitchie, Bubbie (Caleb doesn't really work with ie attached)
I admittedly use fluffy nicknames like sweetie, buddy, winkie... you get the idea.
My hubby on the other hand is a nickname master.
He's given us all kind of crazy nick names.
Just to name a few:
Old timer Old Man
Shark Shark Bait Bait-er
Mo Lubbs Bubbs
one eyed bandit
"one" Moses Match Squishy
Specs Ear wigs
Poopsie Lirpa,

Bet you can't tell which names belong to Caleb!

Me, I'd never think to use a name like
"The one eyed bandit" for Caleb.
I'd worry that it wasn't nearly sweet enough.
But then again, I'd also never think to tell the boys bed time stories that always end with Caleb, the one eyed bandit, saving his brothers by sending all of the bad guys to the city dump.

Our boys love it, and you know what, I think Caleb does too.

Incidentally, Matthew's newest nick name for Caleb is "pillow" because he's so comfortable and squishy.
Now that's nick name that's right up my fluffy alley!

Smoochie

Why hello little Caleb......

Are you thinking what I'm thinking?

Are you thinking about a great big smooch?

Me too!

That's what you get for having such kissable rosey cheeks!

I wonder who you inherited them from?

Nana

Nana, I love you
Nana, I do

Father in Heaven
Has sent me to you

When I am near you
I love you hear you

Singing so softly that you love me too!

Papa

It's always fun when Papa comes,
When Papa comes HOORAY

He always says the kindest things
and in the kindest way

He has a wrinkly twinkly smile,
he's jolly all the day!

It's always fun for everyone,
when Papa comes!

"Little Caleb"

Little Caleb
Little Caleb
Oh Little Caleb, thought that I knew before
Then I saw you
When I saw you
The minute I saw you I knew what my heart was for

Every day makes you older
I get older too
Every morning the sky is falling down
The world is new

Got a right arm
Got a left one too
Tuck you in tight every night in your room
When these arms
Wrap around you
You won’t have to wonder who is holding whom

Every day we are learning
Learning we were wrong
Every morning you’re back where you started
And right where you belong

I am tall
Love is taller
Twenty feet taller, no matter where you stand
I am tall
When you’re taller, Caleb
You can still reach up; I’ll give you my hand

Every day makes you older
I get older too
Every morning the sky is falling down
The sky is falling down
The sky is falling
The world is new

The gift of you

A few weeks after Caleb was born, I remember daring to hope that he'd still be with me on my birthday. My birthday was 3 months away.
When Dallan would ask what I wanted my reply was always the same.
I just wanted Caleb.

Ever since Caleb had RSV and Pneumonia in February, he hasn't seemed quite able to get all better. He had a trach infection several weeks ago, and on my birthday he was diagnosed with pneumonia again. Doctors think it's likely that his trach infection didn't clear up like we had hoped, and that is what caused him to develop pneumonia.

Right now he is getting a 3 day series of shots, is taking 2 more antibiotics through his g tube, and is getting antibiotic drops in his ears because they are not feeling well either. We've increased his oxygen, and we're having him spend some extra time on his ventilator.
Poor little boy.

I know Caleb has had pneumonia numerous times. You would think I'd be used to it by now. I have to admit- it never gets easier. It's hard every time.
It makes me cry.

However,

When I was sitting in the waiting room wondering if we'd have time for birthday cake, I realized I had my most desired birthday wish. I was waiting for the doctor with my 5 year old little boy on my lap.
I got Caleb.
And I can't imagine a greater gift than that.

Dear Caleb,
I'm so thankful we got to share another birthday together.
Thank you for giving me the gift of - you.

Love,
Mom

The wink dog

The boys had a good chuckle when Dad made
the dog just right for Caleb.

Brother time

Matthew loves his watch.

He loves Caleb even more.

Do you know how I know?
I found Caleb with his watch on.

Dear Matthew
Thank you for always having time for me.
Love,
Caleb

Birds eye view

I peeked over the top of my stairs to check on Caleb, and this is what I saw.

I think I saw heaven from way up there.

Batter up!

Even though Caleb has had a trach infection for the last 2 weeks, we couldn't resist the chance to enjoy one of the few sunny days we had over Spring break! We watched the BYU women's softball team play UTAH on a beautiful Saturday afternoon. We munched hot dogs, watched BYU win, and soaked up lots of sunshine!
Batter up my cute boy!

BFF's

The other night Matthew whispered to Dallan
"Caleb is my best friend."

Easter

I love Easter.
I love all that it represents.
As I've been reflecting on Easter and what it means to me, I've been remembering a lonely night I had in the hospital right after Caleb was born. We were told he might not make it through the night.
I was broken.
I felt like every cell in my body- was sad.
I remember thinking "even the people who love me the most can't understand how I feel in this moment."
My heart was in anguish.
Then my phone rang. A friend called to tell me about the prayer that was said in church for our family. The prayer asked Heavenly Father to comfort us because He knew what it was like to lose a son.
He knew.
I was then that I realized His son also knew. My older brother, my Savior Jesus Christ knew. He knew because He felt my sorrow in a personal moment in Gethsemane. That night as I was in and out of sleep and tears, the phrase He knows kept returning to my mind.
This Easter I want to share with you what
I know:

I know that our Savior has conquered death.

I know that He lives.

I know that through him my family can be together forever.

I know that He knows.

Sending love to you this Easter season!