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.

Caleb. Is. STOKED!!!

We finally decided it was time to update Caleb's room and give him a BOY room instead of a baby room.  What did he pick?  What else?  We still have a few details to take care of, but it is officially a Star Wars room!  He absolutely loves it.

Halloween

Holy moley!  I got so caught up in posting old videos of Caleb, that I just realized I never put up Halloween pics.  Caleb was Obi Wan Kenobi (surprise, surprise).  This Jedi had a special Halloween Lightsaber and everything!  We had tons of fun Trick-or-Treating in our neighborhood - it was REALLY busy around here, too.

Smiling for the camera before going out.

A little Jedi battle before Trick-or-Treating.

By the end of the evening Caleb got cold, so I put a blanket over his lap.  Between that and the wheelchair, we decided it was a quick wardrobe change into a Retired Jedi :)

Caleb Learning How to Roll His Head

This was a huge milestone for Caleb - learning how to roll his head from one side to the other.  It was the beginning to him being at least semi-mobile independently.  I didn't realize how cute this video was until I watched it back after filming it.  His smile just melts your heart.  Caleb was 7 months old in this video.

Remember to pause the music on the right if you want to hear the video better.

Caleb Learning how to Shake a Toy, and Perfecting the Bobble-head

When Caleb was an infant we had no idea what we were facing and, therefore, no idea what to expect.  We took each milestone as a huge victory and learned to appreciate the smallest movements, strides and accomplishments.  We watched him carefully, along with many specialists, trying to piece together what was going on with him.  We quickly learned that for infants many of the cognitive milestones are directly tied to motor skills - shaking a toy, putting toys in their mouths, etc.  Since Caleb's motor skills were so delayed, it became hard to tease out if he wasn't meeting the cognitive milestones because of purely motor delays, or if cognition was involved, too.  Our "gut instinct" told us it was purely motor skills - there always seemed to be a curiosity and awareness in his eyes.  As he started to meet more motor milestones it soon became apparent that we were right, and it was simply that his body could not keep up with his active mind.

Here is some video of Caleb reaching some more milestones at his own pace.  The first part of the video is from when Caleb was 6 months old, and the latter part is when he was 9 months.  Remember to pause the music on the right if you want to hear the video better.

Caleb Kickin' It at 4 months old

Jeff and I have often said that we have watched Caleb's progress literally muscle by muscle at times.  Below is a video that demonstrates that.  On Christmas morning when Caleb was 4 months old exactly, he gave us one of the best Christmas gifts we could have ever asked for - a new muscle.  We watched as he began to kick his left leg with a muscle that had never worked before, his left quad.  It took a full month for his right quad to start working, but seeing him kick his left leg opened up a world of possibilities for us.  

Enjoy!  Remember to pause the music on the right to hear the video better.

Caleb As an Infant

We recently had all of our old home movies from when Caleb was an infant transferred to DVD, so I get to start posting some of his progress and milestones!  It's pretty amazing to see how far he's come.  We would literally watch him progress one muscle at a time.  It's amazing to take a step back and see everything that we were doing, and how in tune with his every move we were.  Caleb was about 4 months old in the video below.  WARNING:  There is an upset child in the following video!

Remember to pause the music on the right if you want to hear the video better.  Enjoy!

Gold Wellness Center is Open for Business!!!

Check out Jeff's new office!  We can't get over how gorgeous and spacious it is.  The transition is going smoothly, and we couldn't be happier.  Check it out!

Here's a new type of scalp massage we're considering bringing into the office.

Pretend City

A couple of weeks ago we got to celebrate Cousin Danny turning 2 at Pretend City, which is (according to our family) the New Happiest place on Earth (Disneyland totally freaked Caleb out, and he was miserable the entire time we were there).  Pretend City was SOOOOOO cool.  It was exactly how it sounds - a miniature city where the kids (and maybe the adults) get to pretend to do all sorts of different things.  Caleb's favorite was the grocery store... Papa Mickey said it must be in his genes :)

A Warm Return

On Monday when Caleb woke up he immediately complained of a tummy ache, lost coloration in his face and started acting like he needed to throw up. I made the rapid decision to keep him home from school in case this was the flu. It turned out to be a low blood-sugar episode and he was completely fine the rest of the day (it's really not the point of this story).


Wednesdays are my day off, and my chance to be a Kindergarten mom. I volunteer in his classroom, and then after school we started going to the public library with some of his classmates and other moms. One of the moms told me how truly loved Caleb already was by telling me 2 stories:

1. She told me that her son said to her on Monday, "Mommy, I was trying really hard to concentrate on my work at school, but it was REALLY hard cuz I was so busy praying that Caleb was OK."
2. Apparently when he arrived to class on Tuesday morning, one of the students exclaimed, "Caleb, you're back!" Then the entire class started chanting his name.

I am continually amazed at how quickly he touches people's hearts so deeply. I am so blessed to be his mom.

Coming November 1st!

Jeff's practice is moving and we are happy to introduce you to Gold Wellness Center!  Enjoy the tour.

Remember to pause the music on the right to hear the video better.

A Day in La Jolla

Last weekend we had a great time spending the day in La Jolla.  We had lunch with some friends, walked to the beach, looked for the seals (although they weren't there).  After that we had a great time making sushi for the first time!

Caleb The Rock Star

Caleb found a new setting on the drums!

A Belated L'shannah Tova - "Happy New Year"

A couple of weeks ago we got to "ring in" the Jewish New Year - Rosh Hashanah. Welcome 5771! We celebrated at a dinner and discussion with some family friends. Another evening filled with fantastic people and amazing food!

Caleb working the crowd.

Caleb pretending to talk on the phone. This was hilarious! He sounded like he was actually having a conversation with someone. Then he says, "Excuse me. Can you hold on for just a minute, I need to take a picture. (pause) OK, thanks."

Then he turned to me and smiled, while the person on the other end waited.

Then he got back on the phone and said, "Thanks for waiting." And continued his conversation :)

Dinner time with the kids! Yum.

MDA Telethon, Part 2

I got some more pictures of our wonderful day at the MDA Telethon. Enjoy!!!

Caleb working the camera. "Ring, ring, ring. Ca-ching, ca-ching, ca-ching."

I know this is a little blurry, but I love that Caleb's giving "knuckles" to Adrian Gonzalez!

Caleb and the "Princesses."

Even big stars need to take a lunch break!

Aha, an in-focus picture with the firefighters.

Make a muscle!

Happy family after our interview.

Guess we got a little crazy after a long day!

Newport, Part 2

Last month we got to spend a great day at Newport Beach with Auntie Robyn, Uncle Bruce, and all the Cohen Cousins, Zach, Josh and Ben. We had so much fun, and are certainly missing summer at this stage in the school year.

Enjoying the sand with Cousin Zach.

Get me away from the scarey waves.

I love being at the beach with Mommy and Daddy!

Family time.

Now you see 'em (my feet).

Now you don't (wasn't crazy about the waves).

Caleb Island.

Monkey Boys.

Cousins.

Helping cousin Zach blow out his birthday candles.

Daddy holding up the sunset, trying to keep the day going.

2010 MDA Telethon

This year Labor Day weekend brought another successful Jerry Lewis MDA Telethon. Despite the economy, the generous people of America donated $58,919,838!!! Caleb and many other Ambassadors helped San Diego raise over $650,000 this year. We had so much fun participating in this wonderful event. It's always so nice to see so many people coming together to support this wonderful cause. Enjoy some of the pictures from the day!

MDA's new campaign is "Make a Muscle, Make a Difference."

Here's Caleb making muscles with the Padre's and their wives.

Here's Caleb with his new buddy, Adrian Gonzalez - 1st Baseman for the San Diego Padres. I don't know how to tell you this, but he's kind of a big deal.

Cheese!

Padres, Schmadres. Caleb liked the ladies the best :o)

He kept calling these beauty queens the "princesses".

I know it's kind of blurry, but this is the only picture we have of Caleb with the firefighters this year.

Caleb loves Katie! I don't have the heart to tell him that she's getting married in a couple months.

Caleb and Caleb! These 2 have become buddies over the last few months and really love hanging out together whenever they see each other.

Mommy taking a photo op with her little super star!