The Most Challenging Week of Our Lives

Last week Caleb got RSV, which is a respiratory virus.  Many of us get it every year, but it usually just manifests as a cold.  For Caleb, though, since his muscles are so weak he was unable to clear his lungs.  On Friday I took him into the ER because after four days he was still presenting with a chronic dry, hacking cough, a fever, fatigue and a total loss of appetite.  At the ER they admitted him into Children's Hospital with pneumonia, a partially collapsed lung and a severe weight loss - over 15% of his body weight.  After 5 days in the hospital it became clear that he was not going to be able to rid his lungs of the secretions on his own, so he underwent a bronchoscopy to get rid of all the secretions.  He also had a feeding tube placed to help him gain some weight back.

There were a lot of ups and downs during our week-long stay in the hospital.  However, what we are walking with is an overwhelming sense of love and support from our family and friends.

We were able to make it home in time to celebrate Christmas.  But our journey is not over.  Caleb is scheduled for surgery on the 30th for the placement of a g-tube.  This is a permanent feeding tube that will allow us to supplement his calories to help him gain and maintain a more healthy weight.  After the surgery he will need to recover in the hospital for 3-5 days.  We would appreciate some continued prayers and good thoughts sent his way for a speedy recovery, and a peaceful stay in the hospital.

Thank you so much for all the love and support for our family.  We are eternally grateful.

Fun at Legoland

Over Thanksgiving Break we had an opportunity to enjoy Legoland (thank you Auntie Cassie - you work at the coolest place out of the whole family!)  Enjoy!

Peek-a-boo

 What does a lion fish say?  Raar, glub, glub, glub.

Mommy and Caleb

The whole family enjoying the Lego Christmas Tree

Caleb, of course, had to stop to "shoot" the water.

Caleb loved the musical fountain - he was boogying the whole time!

Enjoying the helicopter ride with Daddy.

Caleb REALLY wanted to do the Firetruck thing.  We figured out how to adapt it to make it happen for him, and we all had a blast!

Putting out the fires.

Why Do I Have Muscular Dystrophy?

We knew the question would come some day, and had prepared ourselves the best we knew how.  But all the preparation in the world couldn't take away the pain of hearing my sweet little boy ask, "Why do I have Muscular Dystrophy?  I don't want to have Muscular Dystrophy."  My heart sank.  We explained to Caleb he was just born with it, and that lots of people are born differently.  We gave him some examples like some people are born not being able to see or hear, some people are born  missing arms or legs, others are born with brains that work differently, and "you were born with muscles that work differently."

"But it's hard for me to do a lot of things.  I don't want to be different.  I don't want to have Muscular Dystrophy."

There was nothing we could say to take away his pain.  The only thing we could do was allow him some space to feel his pain, move through it, and reassure him that we love him so very much even with muscles that work differently. 

We then talked about all the things he gets to do BECAUSE he has Muscular Dystrophy, like eating dinner with firefighters, getting to go to a secret room to pet some sharks at Sea World, and drive his wheelchair - what other 5 year olds do you know that get to drive?  And don't get us started about the walker... "kids are always asking us if they can have a turn riding in your walker!"

"You're right!"  He perked up at this, and became his regular happy self.  We know this is a new layer in his awareness of his disease.  We also know more questions and tears will come.  Hopefully we will always have the strength to be able to help our sweet boy find the balance and peace he deserves in life.

Meet Kylie

This is Caleb with his new nanny, Kylie.  She is from Kansas and will be moving in with us around the first of the year.  She came out for a week over the Thanksgiving Break to make sure we could all actually live together, and it just felt so comfortable the whole time!  She has been wanting to move out to California for a couple of years now - she claims she was just born in the wrong state and meant to be in CA.  She will also bringing her dog, Marley, so we will have a full house very soon!  We couldn't be more excited.  And Caleb... let's just say he absolutely adores Kylie and is counting down the days til she comes back.