Hospital time

We spent the night in the hospital last night so that Caleb could get IV antibiotics for his bladder. He'll be getting a PICC line this afternoon. Hopefully we'll be able to come home tonight so we can finish his IV treatments at home through the PICC line. He's anxious to get back for the Pioneer Day festivities!

Bladder battles

Say this five times!
Caleb Moody
Has a bladder
but he showed his his bladder's sicker
so we called our favorite doctor
to get his little bladder better.

Caleb has another bladder infection... apparently cathing him hasn't quite done the trick. So, our pediatrician and urologist are putting their heads together to come up with just the right recipe to keep his bladder better!

Hydrocortisone

A couple of weeks ago, I took Caleb to the endocrinologist. I was referred to her so we could have a specialist follow Caleb's thyroid and sodium levels. The doctor ordered blood work to test his thyroid levels, his growth hormone levels, and other levels in his body. When I explained how uncomfortable Caleb has been for the past couple of months, she was also curious to see if Caleb was producing the hormone Cortisol. She thought his discomfort could be related to a cortisol deficiency. The cortex of the brain is responsible for producing cortisol, so it made sense to check that hormone level since Caleb doesn't have a cortex. I read that a cortisol deficiency can sometimes be fatal, so I was curious to learn more:

Cortisol is an important hormone in the body, secreted by the adrenal glands and involved in the following functions and more:

• Proper glucose metabolism
• Regulation of blood pressure
• Insulin release for blood sugar maintenance
• Immune function
• Inflammatory response

Although stress isn’t the only reason that cortisol is secreted into the bloodstream, it has been termed “the stress hormone” because it’s also secreted in higher levels during the body’s ‘fight or flight’ response to stress, and is responsible for several stress-related changes in the body.

The endocrinologist called me the next day after looking at Caleb's blood work results. She found that Caleb wasn't producing cortisol at all. She was amazed he had made it through his surgeries, and other stressful times with this deficiency. She said, "WOW, this kid must be as tough as nails!"

So now I'm giving my "tough as nails" Caleb hydrocortisone twice a day. If he ever acts sick I'm supposed to triple the dosage, and if he ever has an unexpected trauma I have injections to give him a quick dose.

We were hoping the hormone would improve the discomfort Caleb has been experiencing. It has seemed to help some, but he still has a ways to go. However, we have noticed that Caleb seems to be more alert and aware and we're tickled with that! I'm interested to see what we notice in the upcoming weeks! The endocrinologist explained that adrenal issues can be really tricky to find, so we feel really blessed to have more knowledge and another tool to help Caleb feel happy in his body.

Dear Caleb,
Thank you for being so patient with your little body. You might be tough as nails, but you'll always be my snugly little boy. I love you so very much.

Our new home

We are getting settled in our new home!
We built a home that made it easier for
Caleb to be with us in our living space.
We widened the hallways.
We widened the doorways.
We poured a wheel chair ramp in the garage,
and we hope to fill it up with the people we love!

We are so lucky to live in another wonderful neighborhood,
and we're excited to add new friends to our hearts!

Nana and Papa

This weekend Nana and Papa were in town for a Bishop reunion. Caleb enjoyed being in the canyon, but he especially loved being with his grandparents! Papa can always get a smile from him, even if he is in a dead sleep!

4th of July

Happy Birthday America!

Angels in Sunset Heights

This week we moved from our little yellow house in Sunset Heights.
It has been tender for me.

While we were expecting Caleb, our whole Sunset Heights ward had a special fast for us.
Our sweet friends and neighbors showered us with love and offered countless prayers for our family.

After Caleb was born, 3 year old Matthew came to me and said,
"Mom, did you know that Jesus peeks in our windows?"
I know He did, because He sent us angles.
We had angels deliver countless meals.
We had angels shovel our walks and mow our lawn.
We had angels decorate our garage to welcome us home from the hospital.
We had angels bring date night to us when we couldn't leave the house.
We had angles sit with Caleb so we could take the other boys on outings.
We had angels surprise us heartfelt gifts.
We had angels drive though snowstorms to get Caleb home from the hospital on his birthday.
We had angels arrange a birthday party and special dinner for Caleb.
We had over 100 angels come to a service party for Caleb
and create packages for other special needs children.
We had angels write him special poems and letters.
We had angels give us their hearts
and love us.

To our angels in Sunset Heights,
Jesus peeked in our windows,
and he sent us you.
Thank you for being a special part of our miracle.
We love you forever.

Just because pictures

Grooming

Caleb has really scaly skin. I've tried all kinds of lotions, potions and exfoliating cream. Caleb definitely gets the spa treatment, but to no avail. Until... Matthew came on the scene. He is just like a little monkey and pick- pick- picks at Caleb until the dry scales flake off and smooth skin appears. Who knew all Caleb needed was a little bit of brotherly grooming! ;)

A cha cha cha

Hope- to infinity and beyond

This weekend we went with "hope kids" to see Toy Story 3. It was such a fun family outing! We loved the movie, and we loved being in a theater filled with families who have special kids. I loved hearing other suction machines, beeps and gurgles. I loved seeing the hallway filled with wheel chairs. I loved being able to go to on a special outing all together, and I loved feeling like we fit right in!
The movie theater was right next to the Mayan restaurant so we decided to splurge and take the boys there for lunch. They loved the jungle atmosphere and were really excited to see the divers jump off of the cliffs!
Thank you "hope kids" for a wonderful Saturday activity!

The treehouse slide

...Because every little boy needs to try the tree house slide at the mall at least once...

Good things to come

This was so tender to me. If you haven't seen this, I promise you'll be glad you did.

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.