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!

Puzzling

Caleb has been a bit of a puzzle today: 

Puzzle piece #1: His lungs sound diminished, yet his chest x rays look reasonable.

Puzzle piece #2: His white blood cell count has gone up instead of down. Hmmm.

Puzzle piece #3: His heart rate isn't back to base line yet.

Puzzle piece #4: He developed a hive-y looking rash on his chest and cheeks.

However, the spinal fluid from his shut is clear, his urine cultures are clear, and his viral panel is negative!  

 In spite of a few puzzles, Caleb looks improved today and I bet the puzzles will resolve in another day or two.

A Primary Children's Adventure

Caleb and I are having a little adventure at Primary Children's hospital this week.  We were admitted late Sunday night and are planning to be there for the next several days.
For the past week or so Caleb just hadn't been himself and was more agitated than usual.  I decided on Friday that we'd get through the weekend, and then I'd take him to the pediatrician on Monday.  Late Sunday evening his heart rate and respiratory rate spiked, and I started to get that anxious feeling that we needed to get him in right away.   Our last hospital stay showed us how quickly things can get critical for Caleb and I felt certain that Caleb had an infection.  So after a long night in the ER we were admitted because his blood cultures showed he was definitely battling some infection and his breathing was quite labored.  Last night he had a CT scan and shunt series, chest x rays, blood work, urine sent to culture, and trach secretions sent to culture.  At this point we think he has a possible pneumonia and a trach infection that can both be taken care of with IV antibiotics.   The neuro surgeons tapped his shunt today because a CT scan showed a slight increase in the fluid on his brain.  We are also watching for a bladder infection.  We'll likely find out more test results tomorrow, but in the meantime these are the things that made me smile today:

*Frozen yogurt in the cafeteria!  YUM
* Snuggling with Caleb in his hospital bed
* The attending doctor's name is  B. Kalm  (How funny is that!!)
* We were admitted strait to the floor- not the ICU!    HOORAY!
* A sweet husband who was willing to pick me up and bring the boys for a visit.
* A note on the white board from Matthew that says "Don't forget to Squish his cheeks"

I am so thankful those anxious feelings that would not leave my heart until we were in the car headed to the hospital.  I know that Heavenly Father is aware of Caleb's needs and that He helps us to have specific feelings when we need direction.   How thankful I am for His loving guidance and tender care.

Caleb's heart

I've been visiting with a cardiologist for the past several weeks about Caleb's heart.

We used a Holter Monitor for 24 hours at home so the doctor could get a good idea what is happening in a 24 hour period.  The results showed  is heart rate is very low- as low as 41 when he's sleeping- but there doesn't seem to be anything causing it.  The echocardiogram showed Caleb has an atrial septal defect which means there is a small hole in the right atrium.  At this point we've decided to watch it because it doesn't seem to be doing any harm.  We are going to do an ultra sound down Caleb's throat so the doctor can get some better images just to make sure we shouldn't intervene sooner. 

Over the past few weeks Caleb has had a bladder infection, then an ear infection, and the good news is his heart rate has been elevated during that time.  It seems like his heart is rising to the occasion when it needs to!

Bless his little heart.

Motherhood

"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be," 

Joan Ryan, "The Water Giver".

Luau Caleb

Caleb recently came with us to a Luau at my Brother's house. He didn't get up and hula, but you know he wanted to :)

Swinging till the Sun Goes Down

Caleb loves his "Make a Wish" Swing. Last night he let me swing him until the sun went down. It makes me laugh that he'll let me push him higher than Mitchell will!