Sick with a smile

Caleb seems to have gotten over RSV. He is still working on the pnemonia in his left lower lobe. He's been really sleepy for the past 2 weeks while his body works on getting better, but he always find a minute to wake up and give me a little smile.

Brows

Do Caleb's eyebrows remind you of anyone else?
He got my blue eyes and Daddy's brows.... I think it's a pretty cute combination myself!

Light

I think it's fitting
that my little boy who is so full of light
Loves light.
Caleb's vision teachers often uses a light box when she comes to visit. It's one of Caleb's favorite toys. It makes my heart happy to see him enjoying his senses in his own sweet way.

Love Pillow

Caleb can't help but feel loved

While he is resting on his special Valentine pillow.

Even though he isn't feeling well

It reminds him how loved he is by all of us

including one special lady

who sewed love into every stitch.

Thank you!

Thankful

It has been a whole year since we've been admitted to the hospital. One year ago we were just getting home from Caleb's g tube and nissin surgery. That surgery ended a long season of surgeries, pneumonias and hospital stays.

We came home with a ventilator so we could hook Caleb up to it at night and hopefully help his lungs improve. Bringing a ventilator home was an extremely difficult decision for me. I didn't want him to need it. I was worried that I'd eventually find myself in a place where he was needing it more and more, and I wouldn't know when enough was enough.

After praying about it, we decided to bring it home and use it as we saw fit. We felt like if it helped Caleb feel happy in his body, and if it helped us keep him at home rather than the hospital, then it would be worth it.

Now that it's been a whole year without a hospital stay, I would say it has been worth it. Especially now because Caleb has RSV. He has also developed pneumonia as a secondary infection. Because we have the ventilator so far we've been able to treat him at home. He's on antibiotics and is requiring extra oxygen through his ventilator- but he's HOME. He's been pretty sick, but we've been able to keep him stable. Today he even perked up long enough to give me a smile.

I still don't know what the future holds. I still don't always know how I feel about having a ventilator at home. I still don't want him to need it. But today....I'm thankful.

BYU vs UTAH

A couple of weeks ago we decided to venture out as a family one more time

to watch BYU play Utah!

Mitchell helped Caleb sing the fight song

And Matthew gave him lots of hugs.

Go Cougars!

Come to Jesus

The Hope bed

Up until now, Caleb has been in a crib. A crib has been the best place to keep him safe, and we've done our best to keep him cozy and comfortable. This past year it was quickly becoming evident that Caleb had no more room in his little bed. We knew it was time to think about getting something else. We were hoping to get a sleep safe bed. Our doctors wrote letters of medical necessity to our insurance company, and we were promptly...denied. However, our secondary insurance really made a case for it, and the day after Caleb's birthday we found out it had been approved! Getting medical equipment for Caleb has been a challenge at times. When his bed arrived, I was overcome. It is a bed that will last for years and years. For me, it has H.O.P.E written all over it.

Volleyball boy

In the Winter we don't take Caleb away from home very often. We really try to not to expose him to sicknesses that Winter brings. However, when the #5 BYU volleyball team was playing #3 Stanford , we just couldn't help ourselves. We just really wanted to go as a whole family. We were able to sit right behind the team so his stroller would fit, and we had a great time! I loved being ALL together. I loved not having the tug in my heart to hurry home. And I loved watching Caleb's brother hold his hand when it got a little loud.
BYU basketball plays against UTAH this weekend. I think we just might have to try this again one more time...

Outside and inside smiles

I remember a conversation I had with a dear friend while I was expecting Caleb. We were discussing his physical challenges, and we were talking about how we hoped he would be "able to smile back." I thought I could be brave about almost anything, but I worried it might break my heart if he couldn't smile back at me.

Caleb can't always smile back.
But when he does, his smiles are glimpses into heaven. They rarely happen on demand. They are usually too fleeting for me to catch on film, but they often appear in those moments when I need reassurance the very most.

I think about that conversation often. "I hope he can smile back..." And now that I have a child who can't always smile back, I've learned that smiling is something that comes from inside. Caleb's smiles are felt more than seen.
Even when I can't always see them on the outside,
I can feel them from the inside.
And that's just as special.

Dear Caleb,
I'm so thankful for your sweet smiles-The outside ones and the inside ones. They are both a miracle to me. Thank you for giving me a glimpse of heaven. Love,
Mom

The blessing of an ear infection

Having a little boy like Caleb often means there are no easy answers. There have been many times when we've taken him to the doctor because we know that he's hurting, but even they have not been able to figure out the cause. It can be challenging when there are so few answers.
A week or so before Christmas we could see that Caleb wasn't feeling well. We took him to the doctor and found out he had an ear infection. I was so relieved- not that he had an infection, but because there was an answer!
This infection has been a stubborn one. We've returned to the doctor 3 times, and we're now on our 3rd antibiotic. However, I'm so thankful that we know why he isn't feeling well and that we have the rescources to combat it. Having an answer is truly a blessing!
Dear Caleb,
Thank you for teaching me about hidden blessings.
I love you so very much.
Love
Mom

Hearts knit together

Would you be able to resist those cheeks?
Me either.

Vision

Caleb has been a bit under the weather for the past several weeks. The last time his vision teacher came, he wasn't even feeling well enough to open his eyes. This time he decided to sneak a peek, and we even got him to smile!

Peek!!

Spirit

Tonight my four boys and I were snuggling together in my bed. We were watching the movie "Spirit." Matthew wrapped himself all around Caleb and whispered, "I would just die with out you Caleb... because, you know... you're my brother."

tender.

Then and now

5 years ago I would often find Caleb's preschool age brothers quietly keeping watch over their baby brother.

Today I caught a glimpse of them saying good bye before they went to school.

I don't think much has changed in 5 years.

Brother bonds are like that.

Birthday boy

Last year we returned home from a two week hospital stay just in time to celebrate Caleb's birthday! Two of my dear friends even braved a snowstorm to make sure that we got home in time celebrate!
This year we enjoyed celebrating at home, all together, with people we love!
It was a cozy day at home with family. Just the way that Caleb likes it!
The boys loved giving him lots of hugs and helping him with his presents! Mitchell has been asking for the movie "Snow White" and was so excited that Caleb was willing to share it with him!
We are thankful beyond words for the miracle of 5 years...

HAPPY BIRTHDAY my sweet boy