The bloody baby

Today is Caleb's last day on omniceph. Omniceph is an interesting antibiotic because it turns his stools BRIGHT RED! I'm telling you this because the other day I took all of the kids to the library and Caleb did a huge blow out in his car seat. I picked him up and had red runny goo running down my skirt, plopping on the road and running through my hands. Not to mention Caleb was covered in it! A woman walked by and in a panic asked if she could get some help! "Don't worry," I said. "It's not blood. Just P**P." He certainly did look like a bloody baby, though.
It took me quite a while to clean us both up, but we stayed and enjoyed the library. It takes a lot of work to take the kids on an outing and it's going to take more than a volcanic eruption to make us turn around and go home!!

On a side note: Caleb is still having spells of severe agitation every day. His heart rate goes up to 200, and his respiratory rate is in the high 40's. His poor little body gets so tight that his face turns bright red, and he gets drenched with sweat. We're thinking it must still be his bladder. We've been waiting for some in home catheter training to see if helping him empty his bladder will do the trick. Hopefully we're on the right track!

Dear Caleb,
Thanks for finding a way share your love with us, even when your body is being tricky.
I love you my sweet boy.

Ben's funeral

I haven't been able to write about little Ben's funeral.
I've been too tender.
It seems too sacred.
The best place for you to read about those special days are on his blog,
through the voice of his mother.
There just aren't words to express such a tender and spiritual event. It was an honor to be there. Even though Becky and I live on opposite sides of the country, I love her like a sister and my heart aches with her.
I am forever thankful for the honor of knowing Ben.
I am touched by the love felt from heaven and earth at his funeral.
I am privileged to have such special and eternal friends.

Emily is another cherished friend that I love like a sister. She also has a little boy similar to Caleb and Ben. It was such a tender blessing to travel together and share the weekend with one another.

I love you angel Ben. "Because I knew you...
my life has changed for good."

Vitamin D Day

Just perfect for soaking up the sunshine with people we love.

Us

Memorial Day weekend

Over memorial day weekend we had 2 family reunions with both of our immediate families. Even though Caleb had been diagnosed with a bladder infection and pneumonia the day before, we made the executive decision to take him with us. It was really important for us to be all together as a family. We wanted Caleb to have the chance to be in the family pictures. We wanted him to meet all of his cousins.
He was happy and peaceful all weekend. He loved being with his family. It wasn't until several days later that he became extremely agitated. We're so glad we had the opportunity to spend time with both of our families- all together.

(The Moody Cousins)

Temple Square

"When you come to the temple you will love your family with a deeper love than you have ever felt before.
The temple is about families."

Two celestial beings

How thankful I am to know
that through Him,

my family can be together forever.

LDS Conference Center

Our entire Moody family enjoyed a tour of the LDS conference Center. We loved walking around on the roof being so close to Heaven.
Caleb was right at home.

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