Christmas for Caleb

On Christmas morning Caleb had a cozy place by the fire where his brothers could help him open his gifts and he could stay toasty and  warm.  It was sweet to see his brothers pile his gifts on his lap and be excited for him.  I love seeing my boys help Caleb experience the magic of Christmas, and I love the way Caleb shines with a Christmas spirit all year long.

I know if Caleb could speak he would want to thank his Dad for a gift he gives him every night.  We stay up late with Caleb every in order for his medication to take effect and to have some special snuggle time with him.  We usually tuck him into bed around midnight, but it usually isn't long until his alarms start beeping, he needs suctioning, he needs a diaper change or more medicine.  A few nights a week we have been blessed with night  nurses who sit with Caleb from 12-6 so we can get some sleep.  On the other nights Caleb is blessed with his sweet father. Dallan selflessly gets up with Caleb numerous times each night to turn, change, suction and love him.  He never complains, and quite often I'll hear him visiting with Caleb while tending to his needs.   I know that there will be a day when Caleb can wrap his arms around his father and thank him for the service he renders in those quiet hours of the night.  But in my heart, I think Dallan already knows.

Nativity Angel

Every year on Christmas Eve one of our favorite traditions is acting out the nativity. Caleb and his cousin Emma were the Angels this year...fitting don't you think?

Heaven

I think a little bit of Heaven shines down on this little boy of mine.

Light

Caleb's eye really responds to light so we have a light box we use  to help him with vision. 

It touched my heart to see Mitchell pull it out so he could teach Caleb.

It melts me to see Mitchell so eager to share the light with Caleb

While at the same time Caleb teaches him what true light really is.

I hope my boys will never forget the light and love they feel when they spend time with Caleb.

For the way he shares his light is divine indeed.

Pink Cheeks

Pink Cheeks how we love thee, let us count the ways...
1. We love seeing you are getting enough oxygen
2. We love smooching them.
3. We love squishing them
Now we just need Caleb could stop wheezing so we could turn that oxygen down a bit... but hey, we'll take pink cheeks any way we can get them!

Christmas Tree Sleeping

My sweet husband is a Christmas boy!  He was born on Christmas Eve and loves Christmas time as much as I do. When he was a little boy he would always beg his mom to sleep under the Christmas tree, and I think Caleb has inherited that same jolly gene.

What a gift these boy are to me...

Sweet words...

A few weeks ago I asked my Sister Arianne if she would take some pictures of our family to help ease that uneasy feeling I always have as the season changes. I worry about how Caleb will weather the Winter, and having some current images helped soothe the tug in my heart. Thank you Arianne, for snatching the last few minutes of day light to capture our little family.  She wrote a bit about our little family on her beautiful blog.  

My mom and I were also visiting recently about the most important lessons Caleb teaches us.  We reflected on the physical limitations of Caleb's body and how he teaches us it's who we are not what we do that matters most... She  gave the right words to the feelings in my heart that day.  You can read them here.  

Sleepy Time

As Caleb has grown, he's had a harder time sleeping on his own. We now give him Tarazadone at night time to help him fall asleep. I love watching his little body start to relax then finally doze off. There's nothing sweeter than a sleeping little boy...

Thankful

Caleb's primary class made him a special Turkey for Thanksgiving!  I was so touched by the things they thought of...

Caleb also has a vision specialist that comes to our home once a week.  For Thanksgiving she traced my hand with Caleb's and made feathers out of textured paper for him to feel.  I am so thankful for the sweet people who go out of their way to love and teach our sweet boy.

HUGS

Caleb's face doesn't always show it, but he is the best HUG soaker-inner I know. I love watching my boys snuggle and squish him. Even though Caleb can't hug us back with his arms, his little spirit hugs us from the inside.

I know that there will be a day when his arms will return every little hug we give him- and I think it will feel just the same as it does now.

 

 

A visit from Becky

Several weeks ago Caleb had a special visit from Ben's mom, Becky. We had a wonderful time chatting, eating and sharing tender tears. Emily and her sweet children were also able to stop by and we loved sharing the afternoon together.  I am so blessed to have such wonderful kindred friends.   

Dear Becky, thank you for the special snuggle time. I love you.

Love, Caleb

A Thanksgiving bug

Caleb has been a bit off for the past several weeks, and my heart has been really tender.  After his last few hospital stays, it has been hard to see how fast he can become seriously sick.  I've been watching him closely and have been praying that his little body will have the strength it needs to weather the illnesses that come with Winter time.  For the past two days Caleb went from being "off" to being sick.  He has needed more oxygen and his breathing has been much more labored.  I took him to the doctor yesterday and we had blood work and chest x rays done.  It looks like he is fighting a virus, so we are doing our best to keep him out of the hospital and treat him at home.  Yesterday he needed more oxygen and breathing treatments, and we kept him on his ventilator for a longer period of time last night and this morning. After we took him off his ventilator it was only a half hour before he made it apparent that he needed the extra support it was giving him so he has been on his ventilator all day.  We're hoping we can use the tools we have to get him through this illness at home and avoid the hospital during Thanksgiving break.  He is such a sweet heart and is being so patient with us as we try to keep him comfortable. We hope this Thanksgiving bug will be on it's way very soon!

Automatic Swish

This week for Family Home Evening Matthew taught the lesson.  He talked about what happens after we die and how we all want to make it to the highest degree in Heaven- the Celestial Kingdom.  Then he set up a basket ball hoop with the word Terrestrial taped to the backboard.  The word Telestial was taped to the rim, and he told us a Celestial shot was a "swish."  He explained we all wanted to make it to the Celestial kingdom, and we would take turns shooting until everyone made it.  When it came to Caleb's turn, he told us he was an "automatic swish" because we already know where he's going.  It touches my heart to see how my boys recognize what a special spirit Caleb has.  They know he has already made it.  The rest of us had to shoot for a lot longer but by the end of the game we celebrated that we all made it to the Celestial Kingdom with Caleb. 

What a sweet glimpse into Matthew's heart. 

Happy Halloween 2011

Happy Halloween!

From our baseball player Dad

Farmer Mom

"Link" Josh (from the Lend of Zelda)

"Link" Matthew

Wolverine Mitchell

And Captain America Caleb!

Our shortest stay at Primary Children's Hospital

This past week Caleb spent a day at PCMC to have a few minor procedures done.

He got tubes put back in his ears, and he also had some dental work done. He was supposed to have an ultra sound through his trachea to get a better look at his heart, but that was canceled at the last minute. The cardiologist didn't want to risk disturbing his nissin. So we decided to revisit his heart issues in another year unless they get worse.

Because Caleb has a history of not tolerating anesthesia well, we were a bit worried about how he would wake up, but he was a champion!  His oxygen levels were weaned down with no problem! His cheeks stayed nice and pink, and he was able to come home by dinner time! Now Caleb has pressure free ears, nice clean teeth, and a tooth to put out for the tooth fairy!

Hooray!

Papa Time

Papa came to visit over General Conference weekend, and these two never miss a chance to snuggle together.

I've got my Eye on you!

Our goldfish with special needs

Dallan recently went home teaching and came home with a gold fish.  Yes.  A goldfish.  The family he was visiting had a daughter who was  asked to home coming with it and asked if he would take it. 

The boys were so excited, and over the next several days we tried to feed it.  That little fish would gulp and gulp at the top of the bowl, but we couldn't get it to eat anything even though we made two trips to the store to buy different foods to try.  At first we thought we had a picky eater gold fish.  Then the boys started to wonder if we had a special needs gold fish.  They thought that maybe he needed a g tube.  Finally, I started to spoon feed it.  Yep.  I'd wait till he was gulping at the top of the bowl, then spoon feed food into it's wide open mouth.  After a couple of days it started eating!  Lots. And now he's been alive for 3 weeks (way longer than we thought.)  I think I might have a knack for this sort of thing.  Just call me  

the fish whisperer.

Noah King

My heart has been tender this week as our dear friends around the world said good bye to their sweet son, Noah.  Our hearts ache with the King family during this tender time. We never met in person, but we are truly close in our hearts. 

Caleb and Noah are special buddies.  They share the same diagnosis, the same special spirit and the same kissable cheeks.  Noah even sent Caleb a special Tasmanian devil all the way from Tasmania, Australia!  There are no words to express our love and gratitude to the King family for sharing their precious miracle with us.  I'm sure Noah received a royal welcome as he passed from our world to the next.  Thank you, Noah,  for the miracle of your presence for 10 wonderful years.  

We love you.

A Picture for Me!

 Today when Caleb's vision teacher came to visit she helped Caleb make a picture just for me!

It's a masterpiece!

A Monet couldn't be more precious to me!

The paper and markers she used are perfect for visually impaired kids!  Wherever the markers are pressed- the paper rises so Caleb can feel what he drew! It's almost like a Braille picture! 
Thank you for the work of art, Caleb!


The paper they used is  quick draw paper" and the markers are "do a dot art" (water based).

September Strolls

I think someone has been enjoying these golden September evenings as much as I have...

Moments I don't want to forget: Movie Nights

Since having Caleb we have become night owls.  His feeding and medication schedules have made it necessary to stay up with him until around midnight.  As a result, we have some really sweet quiet time with him after we tuck the other boys in bed.   For the past several months Dallan Caleb and I have been watching the "Larkrise to Candleford" BBC series in those later hours of the night.  I sit on the couch and make a nest out of my legs for Caleb to sit in.  I cover us up with blankets, and we watch an episode together.  He melts into all of my space and rests his fuzzy little head against me.

I never want to forget the way it feels to have Caleb fill up my lap.  I don't want to forget how sweet his hair smells when I  rub my nose in it.  I don't want to forget how peaceful it is to have him breathing with me, and I don't want to forget how sometimes we get so cozy we fall asleep together. Finally, I never want to forget how much I love to watch his little legs dangle over Dallan's arms as he's carried off to bed. 

We love this time so much, that even on the nights when we could go to bed earlier... we don't.

Can you blame us?

Baby Einstein

This summer I found 12 brand new baby Einstein DVDs at a yard sale for a dollar each! I'm always on the look out for items that will help Caleb use his vision, and I had a feeling he might enjoy them.

Caleb's vision is often "on and off" but today I snapped a few pictures of him as he was watching one of the DVD's. It just tickled me to see him respond to the images on the screen! My little boy who only has cortical vision certainly seems to like them. I know there will be off days, but boy oh boy the "On" days are cause to celebrate!