Masterpiece

Tonight I've been going through some cards and letters I had filed to put in my book or remembrance. I came across a tender letter from my sister. It was written shortly after Caleb was born and I was in tears as I read it again. She ended with a quote:
"The more I think about it, the more I realize there is nothing more artistic than to love someone."
Vincent Van Vogh
She finished by saying: I think Caleb is your masterpiece.

The privilege of caring

Have you ever had the privilege of caring for something so beautiful
it took your breath away?
I have.
Have you ever cared so much
you couldn't find the words to describe it?
I have.

Sometimes I'm asked what our biggest challenges are in caring for Caleb.
It's not the hospital stays or therapy appointments.
It's not the dressings and diaper changes.
It's not his trach or his g tube cares.
It's not his medications or his monitors.
Taking care of Caleb is a part of the privilege of having him.
I think hardest part of caring so much is knowing
that some day I might have to say good bye.
But, even that worry is a tender part of the privilege of caring.

Sometimes we have challenges,
sometimes we're worried, sometimes we're sad,
sometimes we're disappointed, sometimes we're sick.
But it's all a part of the privilege of being here
and experiencing mortality to the fullest.
Sometimes we have challenges
but the plan is still perfect.
We are lovingly cared for
more than we can ever imagine.
When we look down deep we'll see that
what we have is beautiful.
It is perfect.

I love caring for Caleb.
He is perfect to me.
It is privilege that I can't find the words to describe.
It fills my heart
To care so deeply
and it takes my breath away
every day.

Matthew recently told me, "Mom, I just hope that when Caleb is resurrected he'll still have his winking eye because it's just so cute!"
I couldn't agree more!

Elder Jeffrey R Holland

Last night Caleb got to see Elder Jeffrey R. Holland! We were invited to eat with him before the evening session of my parent's Stake Conference. Caleb first met Elder Holland when Mom and Dad Moody were set apart as mission presidents. When Elder Holland walked by our table he asked "Now, who is this?" and I said, "This is Caleb, he actually got to meet you a few years ago!" Elder Holland responded "I remember Caleb- Wow, he takes up a lot more room on your lap than the last time I saw him...!" We were touched that he took a moment to say hello!

This song will always remind me of Elder Holland's message- that God loves broken things....especially a broken heart and contrite spirit.

Lucky

I am so very lucky...

Kiss me, I'm Irish!

Vision

When Caleb was born, we were continually warned of his imminent death. Medical professionals would often shake their heads and predict the worst. Dallan and I chose early on to celebrate each day rather than have our thoughts consumed with the possibility of loss. When Caleb was about six months old, we began the early intervention program in our area. We had a vision therapist from the school for the deaf and blind visit us each week. Terry was one of the first professionals that saw Caleb's potential. She didn't think he was going to die. She looked forward. She came every week with something creative for Caleb to experience. We made Valentines and snowmen. We played with shaving cream and sand. We read Caleb stories and helped him hold Slinkies. She played with him, and she loved him. And I will love her forever for that. We aren't involved with Early intervention any more because Caleb is 4. Terry works with new families and has created a new family of her own- she was married this weekend! Congratulations, Terry! Thank you for your forward vision, and thank you for seeing potential instead of pessimism.

We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths.
Walt Disney

Heaven Sent

(Please turn off my playlist)

Make a Smilebox scrapbook

Celestial Friends

This past week we have been blessed by visiting angels-
our dear friends Becky & Ben.
Becky and I found each other through our children
who have similar physical challenges.
Even though I live in the West, and she lives in the East,
our hearts are knit together in a way that I can't express with words...
the feelings are a little bit too big, and a little bit too sacred.
Becky and Ben were supposed to fly home today,
but yesterday afternoon, Ben started to struggle with his breathing
and wasn't able to get enough oxygen.
He didn't improve over night, and so Becky has to postpone her trip home
so she can take Ben to the hospital.
My home feels so sweet as their spirit still lingers here....
I can still smell Ben's hair on my shoulder.
It didn't want to say good bye,
but I am so sad that they have to stay under these circumstances.
If you have a quiet moment today,
please say a little prayer for our two visiting angels.
They bring heaven with them wherever they go.
We love you dearly, our sweet celestial friends!

Some people come into our lives and leave footprints on our hearts
and we are never ever the same.

"A friend is someone who reaches for your hand, but touches your heart."
- Kathleen Grove

Forever Friends

Big shoes to fill

This week Caleb got his first pair of shoes! His feet have always been too pudgy for shoes...until his best buddy Ben gave him a pair he had grown out of! They fit him just right! Thank you Ben!

Many people will walk in and out of your life,
But only true friends will leave footprints in your heart.

Blooming

I have a little purple flower that is always the first to bloom every Spring!
It always makes me so happy when it peeks out of the ground.
I know it will probably snow again...
but the hope of spring makes feel happy!
Caleb is also having the courage to peek!
He is healing well from his recent surgeries.
He hasn't thrown up since his nissin,
and he seems happy.
I know he'll likely still have some illness
before the Winter is through, but the hope of a healthier year makes my heart HAPPY!

Between my toes

I love to see Caleb use his senses!...This week I've been putting his fingers and toes into a container of rice and beans and corn for some sensory play. His vision therapist had fun putting the beans in between his toes! Couldn't you just eat those cute little tootsies? I could...beans and all!

New wheels!

Caleb got his wheel chair stroller adjusted yesterday! It took 4 months for the parts to come in... just in time for some Springtime strolls through the neighborhood!

Mitchell helped the "wheel chair guys" fix Caleb's stroller with a kitchen beater!

Pucker up!

I told Caleb that Valentines day is a day for smooching...

I told him to practice his pucker...

It took a lot of concentration...

So I decided I better better show him how...

Ahh... a happy boy now that the smooching is over! Eewww!

XOXOXOX

Sunbeam

Jesus wants me for a SUNBEAM

To SHINE for Him each day

Caleb has done well the past few days! Over the weekend he broke out in big rash that covered his whole body so we had to take him to the Doctor. He couldn't figure out why he was having such a big systemic reaction, but some steroid cream and benadryl did the trick! We knew the rash had almost run it's course when it's last signs were in between his toes and on the tips of his ears! I guess we can't play "dot- to - Dot " on Caleb anymore!

A tribute to my brothers

(from Caleb's heart, transcribed by his mother)

I have really special brothers.
Heavenly Father knew he could trust them to love me completely.
They see me with their hearts.
They hold my arms around their necks so that I can hug them.
They crawl into my crib and cuddle me when I need it most.
They visit with me even when I can't speak with words.
They listen with their hearts.
Sometimes they worry about me when I'm in the hospital.
Sometimes it's hard for them to see me with new bandages on my body.
Sometimes they worry that they might hurt me
so they touch me with their hearts.
They are so good to me.
They don't complain.
They often don't realize the many ways they sacrifice for me.
They just love me because I'm their brother, and that's what brothers do.
I know that someday, my brothers and I will be with the Savior,
and He will heal me.
But I don't think I will seem much different to them,
because they see me as I really am.
But I will love to be able to hug them back
and thank them with words for all they did for me.
Because they are my brothers
and I love them with all of my heart.
Love Caleb

jiggety jig

Home again, Home again, jiggety jig!

There's no place like home

Caleb doesn't have any ruby slippers, but our wish was granted... He's coming home tomorrow! He got his chest tubes out today, and his lungs look good! He's tolerating his feedings well, and I've finished my g tube training. So we're preparing to be home by tomorrow evening! Caleb will still be recovering for quite a few weeks, but what better place to heal than his own cozy room, his own comfy bed, and his own family and friends to snuggle him? There's definitely no place like home!

A few pictures from the past few days:

Still not feeling so well...

Starting to feel better...


Getting a snuggle from a"HUG" his nurse gave him!

A little dose of love

Caleb had a really good day today! When I arrived, I changed his trach then changed his G tube dressings and had some more training. By this afternoon we were moved out of the PICU and onto the floor! He still has his chest tubes in, but the drainage has almost stopped! Caleb also started a slow continuous feeding through his g tube. They started him at 5 ml. per hour and are slowly increasing. Once we were settled on the floor I crawled into bed with him and held him on my lap for over 3 hours. Those moments truly remind me what heaven felt like. I finally had to put him down when I got too numb and sweaty from sitting for so long :) Caleb loved being snuggled and held. It was just what the doctor ordered, for both of us. Caleb still has some challenges breathing, but he's getting close to his breathing patterns at home. If all goes well, we may be able to bring him home in a few days to continue his recovery with our home equipment!
Dear Caleb, thanks for the snuggles today. That big dose of L.O.V.E was just what I needed! I love you!

Too many tubes!

Today was tube day! When I arrived at the hospital I learned that his lung was still collapsed and didn't show any signs of improvement. The doctors decided to do a better ultra sound. The results showed a large amount of fluid, so they determined he had a pleural effusion as result of the surgery trauma. They prepared to insert a chest tube by giving Caleb some medicine to put him under, but Caleb didn't respond very well. Even after increased doses, he never did fully relax! He also had a histamine reaction to it which made him break out in a rash all over his body. When he was finally relaxed enough, they made a small incision in his side and place a chest tube between his ribs and into his lung to drain the fluid. He lost 600 ml's of fluid right away! Another chest x ray was taken to see how his lung looked, and it looked so much better... but.... the x ray also showed that the other lung was doing the same thing! So sweet little Caleb has chest tubes placed on both sides. He'll likely have them for around 3 days until they stop draining. His lungs look a lot better though! The surgeons have been down to visit him multiple times and, they feel so bad about the set-back. Caleb is such a little trooper!
Today I went to a 2 hour class to be trained on his g-tube, and started taking care of his tube at the bedside. The g tube site is in good shape and seems to be healing well!
Caleb's sweet face looks much better today! No more chipmunk cheeks! He was tickled with a surprise from his buddy and he loves his BYU Blanket from his valentine!

Chipmunk

Caleb decided that since he has never been to the circus, he needs to create his own in the hospital! Today when I arrived at the hospital, I could see that there was commotion going on. Caleb wasn't doing very well getting off of the ventilator, and after a chest x ray it was discovered that his right lung was totally collapsed. After taking his blood gasses and seeing that his carbon dioxide levels were not good-- we had a little parade back to the PICU! Caleb also had the IV's in his neck infiltrate so his neck and cheeks are so swollen- he looks like a little chipmunk!
So now everything related to Caleb's surgery is on the back burner and his lung have become top priority. They think the collapse is a complication from the surgery and that he has mucus plug that isn't allowing it to re inflate. When I left today, his lung hadn't improved and his tummy was really tight because it's so full of air. It's too bad we can't just transplant the air from his belly into his lungs!
Hopefully tomorrow we'll see some improvement! We love you Chipmunk Caleb!

Post surgery pictures

Caleb was stable when we left the hospital tonight. He is still on the ventilator, but was was doing well! Good night sweet boy!