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!

Sunday Hugs

 

A Roosevelt Road Trip

We don't usually take Caleb far from home, but we recently packed up and drove for a couple of hours to Roosevelt to see my brother Jordan and his family!  It was so fun to take a little day trip together and to spend time with people we love a whole bunch!

A Little Caleb Clip

Cardiology Appointment

Caleb had a Cardiology appointment yesterday.  We discussed his low heart rate issues and the cardiologist had us do an echocardiogram (an ultra sound of the heart) to see if there were any evident complications.  The ECHO showed that his heart actually looks better than it did in 2008 when he had his last echo.  He did point out that there is some flow into the right atrium that is unexplained and he wanted to get a second opinion before we discussed it.  In the meantime, he also sent us home with a Holter monitor.  The monitor is hooked up to Caleb for 24 hours so the cardiologists can get a better idea what his heart is doing during a full day.  Hopefully with more information we'll know if there is anything we can do to help his heart rate improve.  

Rosy Cheeks

For the past several weeks, Caleb's heart rate has been really low, so we're loving it when he wakes up with his sweet rosy cheeks!

Asking in Faith

A few weeks ago our little rabbit Lu Lu died.  It was really heart breaking for all of us.  It was the first close experience my children have had with death.  They loved and cared for their bunny every single day and seeing her still little body just broke their hearts.  We've all been really tender about it.  Matthew took all of the pictures down that he drew of her because they made him too sad.  Sometimes the boys still cry at night when they think about her.  One night as Matthew was sobbing, he said, "If it hurts this much to have Lu Lu die, how will we stand it if Caleb dies?"

Oh my sweet boys.  They love their brother so much.  We live a joyful life and can usually put our fears aside and focus on the blessing of each day.  However, sometimes there are moments when fears of losing Caleb creep up and make us feel extra tender inside.

For the past several weeks Caleb's heart rate has been really low.  He's been spending more and more time in the 40's and one night even dipped all the way down to 36.  The fears I  keep tucked in the quiet corners of my heart have been creeping.  I've been extra tender inside as I've visited with doctors and scheduled appointments with cardiology.  My little boys have been extra worried too.


The other night Matthew said to Dallan,
"Dad, Caleb isn't going to die."  to which Dallan responded, "well everyone is going to die sometime."  Matthew replied, "Not if Caleb makes it to the Lord's second coming, then he'll just be "twinkled" right?  And besides, in the scriptures it says if you ask in faith, you will get it.  So I prayed that Caleb wouldn't die- and that if he does, well then we'll just need to go together." 


Sometimes I wish I could shield my children  from worries that seem too big for their little hearts.  Yet I know  their hearts are growing in ways  I can't fully comprehend.  So when I'm feeling extra worried, I'm asking Heavenly Father -with lots of faith -to bless each of our hearts to have the capacity they need.