Hope

A few days ago
after a heavy storm
I opened Caleb's window so he could smell the rain.
I thought I'd try turning his oxygen off.
I wasn't sure how his body would respond
He has needed oxygen for over a year.
I stepped outside
to take a deep breath
and was greated by a rainbow!
I returned to Caleb's room.
His machines were still and quiet.
I unhooked his feeding and held him
without any tubing attached
for the first time
in a long time.
I cried.
I waited for his alarms to sound.
they never did.
He remained off oxygen
for the rest of the day.
Storms pass.
Hope arrives.
And the smell of rain
lingers to remind us
there are miracles in the air.


We hope in Jesus the Christ, in the goodness of God, in the manifestations of the Holy Spirit, in the knowledge that prayers are heard and answered. Because God has been faithful and kept His promises in the past, we can hope with confidence that God will keep His promises to us in the present and in the future. In times of distress, we can hold tightly to the hope that things will "work together for [our] good" as we follow the counsel of God’s prophets. This type of hope in God, His goodness, and His power refreshes us with courage during difficult challenges and gives strength to those who feel threatened by enclosing walls of fear, doubt, and despair (Uctdorf, Ensign, November 2008).

Tummy trouble

Last week Caleb caught the stomach flu. My other boys had been sick, and I was crossing my fingers that Caleb would avoid it- but he didn't want to be left out. Now, because Caleb had the nissin surgery, he can't throw up. So my poor little boy was so sad and uncomfortable.
During this illness, he had a lot of seizure breakthrough. He would hold his body so rigid, that his arms and legs would turn blue! He would kick his legs and become so upset that he would turn bright red and just drip with perspiration. His seizure threshold seemed to be really out of balance.
Though his sweet little body was quite challenging to manage for those few days, Caleb really touched my heart in a sweet way. He would be so stiff and agitated that I could hardly change his diaper. But when I would put him on my lap to snuggle, he would nuzzle his head into the crook of my arm and relax.
I just loved that he needed his mom to feel better. I loved that he knew it was me and that he was comforted by my touch. I loved how Caleb showed me in such a physical way that he knows .

Proud moments: Caleb's g tube got clogged, so I took it out for the first time and put a new one in. I figured if I could put a trach in, I could put a new g tube in with out going to the doctor! I was glad I did because it came out the next week along with every bit of stomach contents that Caleb's tummy wanted to throw-up! Since I had already done it once-- getting it in the second time was a piece of cake(just a bit messier!)

Church attempt #1

We took Caleb to church with us for the first time since last November! We were so excited! We even made it all the way to the first speaker before Caleb started to struggle and Mitchell had a diaper escapade that couldn't be contained at church.
Do I think it was a failed attempt?
Nope!
It was a treat to be there all together as a family! Even with Josh and Matthew poking, Mitchell you know what-ing, and Caleb coughing- it was worth it! Next week I just know we'll make it so speaker number 2!

Better boy!

Caleb seems to be feeling quite a bit better today! I was able to turn his oxygen down a bit, and he had lots of smiles to share- even in his sleep!

Peace!

How sweet it is

to be loved by you!

Snuffy

Caleb seems to be feeling better from pnemonia,
but he still requires breathing treatments and 3 liters of oxygen to maintain good saturation levels.
I think he enjoys his nebulizer mask;
sometimes he likes to wear it on his nose instead of his trach just for fun. He thinks it makes him look like snuffalufagus.

Un-wanted guest

Caleb has lots of little visitors in his lungs. Some come and go. Some stay for a while. Some settle in and make themselves at home. Caleb didn't realize that pneumonia snuck in, but he's having a hard time getting rid of it! I don't want to be inhospitable, but I'd like this trespassing guest to hit the road as soon as possible! Caleb's lungs would like some privacy!

Whole

Are you having a girl or a boy? That seems to be the most often asked question when you're expecting a new little one. Those who don't have a preference might respond with something like: "We just want a healthy baby" or "we don't care as long as it has 10 fingers and ten toes..."
I probably would have agreed- before I had Caleb. When we were expecting Caleb, we knew his brain was missing the corpus collosum, but other than that, we had a limited amount of information. I remember the day that a doctor called me after viewing the results of an in-utero MRI. He casually told me that Caleb was missing one of his eyes.

One eye. Caleb only had one eye. Over the next few months, it seemed that every time we learned something new, something else was missing. When Caleb was born, we soon found out that he was missing his brain. That information wasn't the most devastating.

"You'll likely have weeks before his death...take him home, there is nothing more we can do" was the most devastating.

It didn't matter what was missing. It didn't matter that he wasn't a healthy baby.

I couldn't bear the thought of missing him....
Caleb isn't incomplete. In fact, he is more whole than I am.
I love every little part of him.
I wonder what I'll say the next time I'm expecting and I'm asked my preferences.
Perhaps I'll just answer that I'm profoundly thankful for the privilege.

This past week I took my 4 year old Caleb on a walk.

I took a picture of him over the top of his stroller.

10 little toes...

Perfect.

Just like he is.

I SPY

I SPY a little Caleb who went to the Walter Wick exhibit over Spring break....

Stumped?
That's because he's behind the camera with me...

now that's a great optical illusion!

Pumped!

Caleb got a fancy new feeding pump, and a new haircut, too!

The pump primes itself with the push of a button

and Caleb's as cute as a button with his fuzzy head!

Caleb has gained 5 pounds over the past couple of months! Caleb used to throw up at least once a day, but since having the nissin/g-tube surgery, he hasn't thrown up once! Now all of his extra calories are being pumped right to his cheeks- just where I like them!!

Sunny Days

And the forecast is...cloudy with a slight chance of sunshine...

We had a sunny day last week and couldn't resist a walk in the sunshine!

Happy Easter

Happy Easter to my eggs'tra special boy!

Worms

My little boys had fun fun playing with worms today.
Mitchell wanted to share his squirmy little friends with Caleb who was watching from the window.

Matthew helped him not to feel too nervous

and he put the worm on his hand

so that he could feel it wiggling!

I am a child of God

Cute

Just because I think you're cute!

Cozy crib

Caleb spends some cozy time in his crib each day
So I like to put a few bright toys beside him ...

because just in case he is in a glimpsing mood...

I want to keep it interresting!

Focusing

Caleb has a preschool/vision teacher who comes to see him for an hour each week. She brings various toys and textures for him to experience, and she really works with him on his vision. Sometimes Caleb responds to lights, sometimes he responds to bright colors, and today he responded to Boobah! We helped him touch it with his hands, then we helped his fingers push the buttons. Then Caleb's eye saw it! He really saw it! His eye usually wanders quite a bit but today he worked so hard to keep it focused on the toy. When his eye would start to wander, he would concentrate so hard to bring it back to see the toy! We were so excited!
Some days I can see that Caleb's eyes are focused on heavenly things, but today it was a real treat to see him use his vision to enjoy a toy for just a few moments!

He was tuckered out after playing hard!

But he wasn't too tired to give us a little smile

Big Brother

Matthew loves to crawl into Caleb's crib to snuggle him.

He loves his pudgy hands

He helps him talk

He just loves his winkie eye

He gives him "bunny ears" just like big brothers should

and when he sees he's being photographed, he finishes his snuggle in private!

Visiting Ben

Visiting Becky and Ben before he was life flighted back home to be in his own PICU! He was in the same room that Caleb was in during our last PICU visit. His spirit fills up the room just like Caleb's does. I hope Ben's nurses knew how lucky they were...

Bugs

The little boys in my family LOVE bugs! In the spring you'll find my older boys outside with their butterfly nets and bug catchers for hours at a time looking for some new specimens! Caleb likes bugs too! Sometimes we find the bugs he catches in his lungs. Yesterday we took him in for some chest x rays and cultures. We had heard some little bugs cackling in his lungs the night before. We were worried about pneumonia, but this time it looks like he just has a bug...a virus...so far he's handling it pretty well. We've turned up his oxygen; we've been keeping him suctioned, and we're keeping him nice and warm. Even though his brothers like to catch bugs, I think Caleb is ready to take a break from bug-catching for a while!

Caleb's buddy Ben is fighting some stubborn bugs in his lungs. His birthday is on Saturday! He's a little 'bugged' that he'll likely celebrate in the hospital...If you have a moment, say a little prayer for him and his sweet family!