Holding Caleb

Matthew has always been so tender with Caleb. After Caleb was born Matthew insisted on holding him every day. The first time Matthew saw Caleb, we were in a hospice room in the hospital. Dallan and I knew that this could likely be the only time he would ever get to hold him. We were feeling so tender, yet Matthew was just filled with delight! He paid no attention to the wires and the monitors. He just loved holding his little brother.

As Caleb has grown bigger, it has gotten more difficult for Matthew to hold him on his lap. Now he spends a lot of time holding his hand. In fact, when Matthew has had a hard day, we often suggest that he hold Caleb's hand for a while. It calms him. Matthew has learned that being with Caleb brings him peace.

The other day Matthew came into Caleb's room where I was holding him and asked if he could hold Caleb on his lap. They rocked for a long time. He paid no attention to his feeding tubing or his humidifier circuit. I'm sure his arms and legs got tired, but he didn't notice. He just wanted to hold his little brother on his lap again.

Overheard

I just over heard Matthew saying "Hey Josh! I just beat Caleb in a staring contest!!"
Love it!

A Touch of Autumn

It touches my heart

to experience Autumn with Caleb

to see the sunshine on his face

and feel the love of his brothers.

Dear Krista,

Dear Krista
Thank you for sharing your heart with me over the past few months! You have been an angel in our family. You are a very special nurse and friend. Good luck with your new adventure!
I love you to the moon and back!
Love
Caleb

The wishing tower

It was magic from the time we stepped through the doors!

Caleb was the star of the evening!

We explored the grounds,

and spent some time at the wishing pond.

We each got to make a wish and throw a special coin in the fountain. They even gave us each another coin to save as a keepsake!

Our wish granters took us on a tour of the building, and we spent some time talking about Caleb's wish. They were great sports to entertain my boys' wiggles and short attention spans! We wrote down Caleb's wish, and then we all got to write our own wishes for Caleb to be read in the wishing room.

The boys could hardly wait...

There was a special lock for our special key

Matthew helped Caleb put it in the keyole.

Caleb was full of smiles as we stepped inside. There were beautiful lights and a magic waterfall in the center of the room!

We all got to read the wishes we wrote for Caleb.

Caleb's wishes from us were put in a knight for us to keep, and his special wish was put in a golden case!

We all helped send Caleb's wish to the wishing wizard!

It was magical!

Our wish granters were wonderful!

The evening was full of magic.

My boys will never doubt that wishes really do come true!

Caleb loves to be with his brothers so we helped him wish for a way that he can be more involved in play time with them! We are hoping to use some magic to conjure up something they can all enjoy and that will be adapted to meet Caleb's needs! We will likely wait to finalize our plans for a few more months... so that the wishing wizard will have time to think of something just right!

The magic key

We got a special package in the mail from the "Make a Wish Foundation!"

Inside it had a special key...

that will open the door to the wishing room!

Sending kisses to Make a Wish!

We're excited to meet you at the wishing tower tomorrow!

Round 2

Yesterday we had another round of appointments at Primary Children's hospital.
ENT: Everything looks good with Caleb's ears and trach! We got a few nifty new trachs, that I might even save for his Christmas stocking. :)
Pulmonology: He had some good suggestions for Caleb's wheezing. We are using flovent morning and night through his trach, and we use atrovent and xopenex for episodes that occur during the day. We also changed the tidal volume on his ventilator to 140 to accommodate his growth and keep his lungs nice and open for the winter.
Rehab doctor: We'll continue to stretch Caleb's ankles and put his braces on daily. We're also going to try melatonin to see if we can help Caleb sleep at night.
Nutritionist: We're switching Caleb's formula from Nutrin Jr. to Peptamen. This formula plus some added bene protien should meet his protien needs. We're also going to add a half teaspon of Morton Lite Salt to meet his sodium needs. We're also going to start using Schiff liquid Multivitamin instead of the other mulitvitamin we've been using. We decided to cut his calories a bit as well to see if we can stay on top of his fluffiness
I really appreciate the children with special health care needs clinic for making it possible to coordinate so many appointments!

Wishes really do come true

Caleb is going to have a wish granted by the "Make a Wish" Foundation! We are so excited! The foundation contacted me a few days ago to see if we'd be willing to be the featured family for an upcoming "Family Fun Run" in our area since Caleb will be getting a wish granted soon! The Fun Run is being sponsored by local schools in conjunction with Utah Family Month in November, and all of the money gathered goes directly to the foundation!

The "Make a Wish" foundation grants wishes for children with life-threatening medical conditions. It has been a wonderful experience to work with a foundation that focuses on creating magic for children like Caleb and their families! You can check out their website here to learn more about them!

Here is the information for the Family Fun Run:

Family Fun Run
Saturday, November 7th at Orem Elementary
9:00 Registration, Warm up, Meet Make-A-Wish child (That's US!)
10:00 Run Begins
1 Mile/5k Run/Walk
$5.00 by October 29th includes T-shirt
$7.00 after October 29th does not include T-shirt
There will be refreshments and prizes afterwards!
If you are interested in participating, just let me know and I'll e mail you the registration form. If you return them to me with your $5 registration fee I'm happy to turn them in for you!

It's Autumn time

* I will take Caleb outside to enjoy the Autumn sunshine.
* I will let him taste a caramel apple
* I will help him crunch leaves in his hands
* I will wrap his arms around a pumpkin
* I will take him to the canyon to see the magic of the mountains
* I will dress him up for Halloween
* We will experience the magic of this season, and we'll try not to worry about what the winter will bring...

"There is no season when such pleasant and sunny spots may be lighted on, and produce so pleasant an effect on the feelings, as now in October."
- Nathaniel Hawthorne

Special friends

Make a Smilebox photobook