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!

Going Fishing

For Family Home Evening we took our boys to the school carnival!  They had a great time using their tickets to play games and buy treats.  The highlight of the night... watching Josh help Caleb at the fishing pond.  

So sweet.

Spiderman

(During Caleb's last hospital stay)

Mitchell's favorite part of primary Children's hospital... 

The SPIDERMAN statue! 

With Mitchell and Spiderman on the loose, Caleb couldn't stay sick for long!

Spider, Spiderman,

Does whatever a spider can

Spins a web, any size,

Catches germs just like flies

Is he strong?

Listen bud,

He's got radioactive blood.

Can he swing from a thread

hang an IV bag over head...

 You bet, he's Spiderman!

Salem Pond

A warm September evening at Salem Pond

with my boys and my little brother and sister

plus ice cream on the way home

equals a pretty close to perfect night!

(more pictures and thoughts about my brother and sister here.)

Wondering where Caleb got his fluffy cheeks?  Look no further...

Shading

I took the boys to the library today and noticed Josh wouldn't move away from the van door.  When I finished unloading everything and saw him still standing there, I walked over to see what he was doing. 

Josh had noticed that the sun was shining right into Caleb's eye, and he was shading him with his hands until I could unload him. 

Such a simple gesture, but it touched my heart to see Josh 

keeping a careful watch.

Moments I don't want to forget: Ice cream

The day after we got home from the hospital we had a family gathering to watch the BYU game and celebrate my niece's birthday!  I had Caleb on my lap while I was eating cake and ice cream and decided to let Caleb have a tiny bite of ice cream.  He loved it!  He even opened his mouth for more!  It made me teary.   You see, Caleb is fed through a g tube in his belly. He has a nissin and also has a cleft palate which has made oral feedings impossible.   He has enjoyed cotton candy, licks of licorice and other little tastes, but I've never seen him respond the way he did to ice cream.  I don't ever want to forget the joy on his face as watched him lick bite after bite off of his little lips.

We're Home!

We're Home!

(Hooray!)

We love U!

Most of Caleb's puzzles have been solved... except for one.  So, he is still in the hospital, but we should definitely be coming home tomorrow- just in time for labor day weekend and BYU football!

We are still waiting for the bacteria from the respiratory cultures to be identified so we can treat Caleb with the right medication when we get home.  He may need a PIC line if he still needs IV meds, but hopefully we can transition to oral medication instead.  

One of Caleb's night nurses at the hospital is a die hard UTE fan and kept insisting that Caleb's rash was from the BYU blanket I put putting on him.  One morning I found a big "GO UTES" on our marker board, and today I found Caleb dressed in a shirt that he had decorated himself with a red marker!  HILARIOUS!  I couldn't stop laughing!  Caleb and I decided we could be UTE fans just for today. 

  HAPPY FACTS ABOUT BEING ON THE FLOOR  INSTEAD OF THE ICU:
* I can actually get Caleb dressed every day! He always looks way less sick when he's not just hanging out in his diaper with a million tubes showing (how embarrasing!) 

* It's so much easier to get lots of snuggle time!

* I can bring food into the room and munch my heart out!

* If Caleb's on the floor instead of the ICU, it means the hospital stay is way less stressful!

* We were able to have some very sweet visitors spend some time with us!

 Caleb's getting his sparkle back, and his cheeks are ever so smoochable!

 Gotta love the rivalry banter!

Thank you too the wonderful doctors and nurses who have taken such good care of us.

We love U too!