Caleb & Company

Check Out the Latest White Belt!!!

2012-02-14T09:43:00.000-08:00

Caleb's best friend, Collin, has been doing karate for a while. Of course this meant that Caleb has been begging me to do karate as well - anything that has to do with fighting is SO COOL in his opinion. One day last week Caleb's swimming lesson got cancelled, so we decided to go watch Collin's class. The whole time there was a voice inside my head telling me we HAD to find a way to get Caleb involved, but I just couldn't figure out how this could work.

Through most of the class I was disheartened as I watched the kids do so many things that there was no way for Caleb to do, even with adaptations. Then, for the last activity the instructor would hold a pad in front of the kids' faces and they needed to hit it away with a particular punch. He brought the class to the edge of the mat so Caleb could be involved, too. In the middle of it, Caleb looked up at me with such bright eyes and the biggest smile, and said, "Mom, I'm doing REAL karate!" That sealed the deal. We would make it work.

The owners/instructors have been so accommodating and willing to work with us! They see how valuable it will be for everyone. We are all so excited for Caleb, but he is definitely the most ecstatic out of everyone.

Happy Valentines Day!

2012-02-14T08:07:00.000-08:00

Last weekend we got to celebrate Valentines Day a little early at Grammie Mumu & Papa Mickey's house. We had so much fun hanging out with the family, making little pizzas, and decorating cookies/cupcakes. Hope you all have a great Valentines Day!

You've Got a Friend in Caleb

2012-02-12T16:07:00.000-08:00

I took this video of Caleb dancing the other day. He was just so happy and joyful I had to share it. The funny thing is that when he did the dance there was no music to dance to. The song I picked was the first try; it fit so perfectly I didn't even try any others. Enjoy!

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

Firefighter Bootcamp

2012-02-12T15:24:00.000-08:00

A couple of weeks ago Caleb was asked to be one of the Ambassadors for the MDA Bootcamp for the Firefighters - this is a meeting where a bunch of firefighters come together to learn how to "Fill the Boot" for the MDA. This year Caleb wanted to be very "stylish" and where a tie :) He helped by taking pictures with people, handing out awards, and was part of the entertainment - this year he told them 5 Firefighter jokes! It was pretty cool to see my 6 year old standing up in front of about 150 people, telling jokes and loving life!

Just a little reading before going off to work.

Making a muscle; making a difference.

Caleb posing with two other adorable Ambassadors.

Handing out awards.

Here he is telling his jokes!

Make sure to pause the music on the right to hear the video better.

Disneyland

2012-02-12T15:00:00.000-08:00

We decided to go to Disneyland over the holidays. It was so much fun taking Caleb at this age - when he can understand that it's all pretend and not be scared by everything. Of course we spent most of the day in the area of Star Tours - we rode that ride 4 times (thank goodness for wheelchair access!). It was interesting trying to stabilize Caleb during the ride. It was a 3-D ride where the entire cabin is moving around as if we're in a spaceship. All he was given was a lap belt, so I was on one side of him strapping his body to the seat with my arm, and Jeff was on the other side of him holding Caleb's head with his hands. Caleb absolutely loved it.

However, the highlight was DEFINITELY the Jedi training! Caleb got chosen, along with about 25 kids, to train to be an honorary Jedi. Caleb took his training VERY seriously, imitating the instructor's every move. Then up from the floor rise Darth Vader and Darth Maul! The kids then got to battle them - Caleb got to take down Darth Maul. Then the Darth's left, but there were still 2 Stormtroopers left on the stage. The Stormtroopers quickly realized they should get out of there because they were totally outnumbered. So they start running out of the area, and who's the ONE KID brave enough to chase them down? That's right, Caleb was the only kid who chased down the Stormtroopers!!! One of the Jedi Masters had to step in front of his wheelchair to stop him. I just about died laughing at the irony.

So excited on the tram!

Disney Holiday tree.

Daddy and Caleb in front of It's a Small World.

Jedi training. Caleb didn't miss a single second of his directions.

Learning some of the moves.

Taking on Darth Maul.

We loved our family day at Disneyland!

Here's Caleb talking about his Jedi training.

A Love Note

2011-12-18T10:11:00.000-08:00

Caleb has a new love interest. Her name is Beatrice and she rides the bus with him every day. She's an older woman, though - 4th grade. Apparently he tells her, "I love you," and her response is, "You're not my type." I guess she's into guys her own age and is in love with another 4th grader. Ahh, young love. Anyway, Caleb came home from school on Friday and said, "Mom, I want to make a card for Beatrice to tell her I love her." So here it is.

Awwwww.

OK, so they battle together (typical Caleb move).

Then she uses the Force on him, causing him to drop his lightsabers.

Then she cuts his head off! How romantic!!!

Unfortunately, I had to break the news to Caleb that he can't give the card to Beatrice because if she takes it home her mom might think he's somewhat.... DISTURBED. He learned that when making a love note, it's pretty important that nobody dies.

Caleb Swimming, Yet Again

2011-12-18T09:50:00.000-08:00

Caleb has been doing such an amazing job with his swimming lately. It never ceases to amaze me how agile he is in the water. He has become so smooth in his movements and strong with his strokes. Pretty astounding to watch.

Here he is from another viewpoint.

Check out Caleb's Moves

2011-12-16T22:00:00.000-08:00

One day Caleb said, "Hey Mom. Check out my awesome moves!"

So, of course I grabbed my camera for you to enjoy his awesome moves, as well :)

Halloween

2011-12-16T21:47:00.000-08:00

HOLY GUACAMOLE!!! I can't believe it's been almost 2 months since my last post! I've got some serious catching up to do. Here are some pictures from Halloween. We were a Superhero family... with a twist :)

I made some pretty sweet pumpkins this year - above is Anakin and below is the Republic symbol (Star Wars, of course).

Caleb Sitting Up!

2011-10-19T20:58:00.000-07:00

A few days ago when Caleb woke up I heard him moving around a bunch. Then I heard him call to me, "Mom! Can you come here, please? I have something to show you!" When I walked in the room and saw him, I stopped dead in my tracks. My jaw dropped, and tears immediately came to my eyes. He was sitting up in his bed just looking up at me with the biggest, proudest grin. Before this moment he had never sat up on his own. For the rest of the morning he showed each one of us individually how he did it, narrating his every move.

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

1st TOOTH!

2011-10-19T13:54:00.000-07:00

On Monday Caleb lost his first tooth!!! We were on our way to the Dr. (Caleb had the flu) and he was munching on an apple. The tooth that had been pretty wiggly for a while was suddenly just dangling there, so he pulled it out. Then he, of course, had to show everyone in the Dr.'s office. It was pretty cute to see how proud of himself he was.

Saying, "Thank You."

2011-10-19T13:49:00.000-07:00

This year, in honor of the 10th anniversary of 9/11, we decided to say, "Thank you," to our local Firefighters by visiting some of the stations and bringing them cookies. They were all so happy to see Caleb whizzing around in his wheelchair and loved the cookies. Caleb took his challenge coin and challenged almost every firefighter. There were definitely a few that didn't have their coin, so Caleb will be owed quite a few drinks when he turns 21!

50's Day at School

2011-10-19T13:40:00.000-07:00

I got a text from Caleb's wonderful aide the night before at 9:00 saying, "Don't forget tomorrow's 50's day." Well, of course I had forgotten! Kylie and I quickly brainstormed what he should wear and we came up with this outfit! Turned out pretty sweet, if you ask me :)

Love the tough-guy look!

This one cracks me up every time I see it! I love the cheesy grin as he's looking off into the distance.

2011 MDA Telethon

2011-10-19T13:33:00.000-07:00

We got the privilege of participating in another MDA Telethon. It was different this year because it was only 6 hours long on the Sunday of Labor Day weekend, and Jerry Lewis has retired. We always have so much fun helping to raise so much money - this year $61 million was raised!!!

The 2 Calebs - they have become such good buddies and are already talking about spending the week at camp together next summer.

Caleb with Angel and Alex - two of his favorite MDA ladies. And, yes, he still LOVES hair!

Getting ready to go on camera :)

Lightsaber battle with Ashley. No event is safe from lightsaber battles.

Making a muscle with one of his favorite Firefighters, Angel.

Lightsabers on camera.

Making a muscle with some of the most amazing moms I know.

Me, Starla, Melva, and Kim.

Ring, ring, ring, ca-ching, ca-ching, ca-ching.

Being presented with a Firefighter challenge coin from one of the Fire Chiefs that has been touched by Caleb.

After our on-air interview.

Getting ready for some more on-air time.

Keep Smiling, Caleb

2011-09-03T13:15:00.000-07:00

Here is the video that KUSI put together about Caleb this year. We are so excited to be a part of the MDA Telethon for another year, and were very moved by what John Soderman put together to create this amazing video. Thanks for watching!

Under Water Pictures

2011-08-23T21:36:00.000-07:00

Haven't had Caleb's pictures taken underwater in a while. I thought I'd get in there with him this time around. It was fun, but way more difficult than it looks. It was so cute, before getting in I told Caleb that I needed to practice going underwater without blowing all my air out so the bubbles wouldn't get in the way for the picture. So he had me practicing beforehand. It still ended up that he was more photogenic than his mom in this photo shoot.

X-Games

2011-08-23T21:17:00.000-07:00

A couple of weeks ago Jeff got hooked up with some tickets to the X-Games for the family. It was such a cool experience. We went to watch the skateboarding finals and were definitely entertained. We got to see Shaun White clinch the Gold! Caleb loved the moment and said afterwards that he really wants to meet Shaun White. So if anyone knows him, can you please spread the word?

Mommy & Caleb Date Night

2011-08-23T17:39:00.000-07:00

A couple of weeks ago Jeff wasn't feeling very well, so I decided to take Caleb to see a movie - he had been asking to see the Smurf's for quite a while. I told Caleb I wanted to go on a date with him and go have some dinner and see the movie. He responded, "DATE?! We can't go on a date, 'cause dates are for falling in love!" I explained it wasn't going to be that kind of date :), more like a play date, but just for the two of us to enjoy each others company. We had so much fun chatting about Star Wars, Super Mario, and so much else. Any time he would start up with "boy talk" (e.g. about poop or something), I would tell him that we don't talk about those kinds of things on a date. Then we'd change the subject and move on. Good training for a real date (way, WAY in the future). Unfortunately he made me foot the bill this time.

Ready to eat our pizza (he picked the cuisine)

He got a cupcake after dinner. Can you tell what flavor? This is when I knew for sure that my date was not trying to impress me.

1st Day of 1st Grade

2011-08-22T22:58:00.000-07:00

Last week Caleb had his 1st day of 1st Grade (*sniff*). It kinda hit me that this was REAL elementary school! I mean Kindergarten was just like practice school. Now he's in an actual grade. Enjoy the pictures of my little man!

Posing with a couple of his Star Wars buddies

Using the Force as he gets on the bus.

Sitting in his 1st Grade desk.

One of his friends, Lily. They've lived in the same neighborhood their entire lives, but the first time they've gone to school together.

That's his best buddy, Collin, next to Caleb. They have become best friends over the last 6 months and now get to be in the same class!

More Swimming!!!

2011-08-22T22:31:00.000-07:00

Caleb has been doing absolutely AMAZING in swimming lately. He had a scare in the pool a couple of weeks ago, and ever since then he has been taking it very seriously and wanting to practice in every spare moment of the session. This has made him progress in his skills by leaps and bounds. Enjoy these videos!

Newport

2011-07-31T17:29:00.000-07:00

A couple of weeks ago we got to spend some time with family up in Newport. We had so much fun spending time at the beach and just lounging around.

Enjoying some kayak time with Papa Mickey.

Taking another ride with Dad.

Building a sandcastle with Uncle Dan and Cousin Braden.

Hmm. Looks like they're burying more than just your feet this time.

Good thing it was low-tide.

Enjoying a frozen banana at the Fun Zone.

Beach Time!

2011-07-31T17:12:00.000-07:00

I can't believe I forgot to post these pictures from Father's Day. We had a wonderful day at the beach enjoying the sun, sand, surf, and a bunch of family. It's become a tradition, one that we enjoy every year. This year we were even blessed with perfect weather.

Playing in the sand with Papa Mickey and his Cousins, Brookie and Zoe. Notice the big pile of sand in front of Caleb - his favorite thing to do in the sand is to have other people bury his feet, then he pretends they are monsters escaping from their slumber. It's cute, but the kid can do it for HOURS.

Checking out the waves with Dad.

Weeeeee!

Ridin' the waves.

Catching some rays to get warm.

Enjoying some ice cream

Another great day at the beach!

Back in Swimming!

2011-07-27T19:01:00.000-07:00

Caleb recently started swimming again. It is so incredible to see him and his instructor, Mr. Brett, work together. He is able to do such amazing things in the water - walking independently, holding his breath for long periods of time, and SWIMMING!!! I mean he is actually propelling himself in the water. When we started on this journey when Caleb was 11 months old, we signed him up for it to just be water therapy. He has completely exceeded our expectations. At least half of my time of every session is spent with my jaw dropped open, just watching what he can do. Anyway, enough of my mommy bragging :) Enjoy the video!

Sleep Study

2011-07-20T13:35:00.000-07:00

A couple of weeks ago Caleb went in for a routine sleep study. One of the first signs of progression of Caleb's form of Muscular Dystrophy is usually sleep apnea and can often occur around the age of 5. So we decided to get the sleep study done, even though he wasn't showing any signs/symptoms of apnea, just to make sure. I'm happy to report that everything checked out A-OK, and no concerns were seen.

Even better, Caleb was an absolute champ, and the sleep study itself was completely uneventful. This was especially a relief after the one we did when he was 2, which was one of the worst nights of my life! Click here to see what I'm talking about :)

Nighty-Night!

Caleb's Room

2011-07-01T19:24:00.000-07:00

Caleb got ahold of the video camera the other night and wanted to give you a tour of his bedroom.

*Warning: This video may cause motion sickness!

MDA Outback Golf Tournament

2011-06-18T17:22:00.000-07:00

Last week Caleb was once again asked to represent the MDA at the Outback Golf Tournament. This is always a really fun event - one that mommy looks forward to every year. This year Jeff and Kylie got to join the festivities as well. Such a fun day! Here are some of the things he got to do.

Doing his duties of taking pictures with some of the golfers.

Getting interviewed by the TV station.

Having epic battles in between duties.

Taking a ride in the golf cart.

Oops, did we forget something?

More epic battles.

More pictures. By the end of the day some of the golfers were getting ahold of some of Caleb's weapons (note the guy in the blue shirt).

Caleb even got to drive the golf cart!

Here's Caleb as he mentally prepares for his big wheelchair race :)

Here's the big race! He was so excited.

Last Day of Kindergarten

2011-06-14T21:21:00.000-07:00

Last week Caleb had his last day of Kindergarten. *Sniff* I can't believe his first year of Elementary School is done! The time went by so quickly. He had an amazing year with a fabulous teacher and an equally fabulous 1:1 aide! He made so many friends in his class that accepted him for who he is right from the start. And, yes, he was even part of a Kindergarten love triangle :) We are looking forward to First Grade and all the new things he will learn.

This is a video of Caleb's class singing, "I am a Pizza." You can see Caleb between the two ladies' heads.

Here he is getting his certificate of completion.

Caleb and Mrs. Salmon (Annick), his aide.

Mrs. Miller, his teacher

Caleb and Kelsey - his "one love", the one he is determined to marry :)

Leslie, who claimed Caleb was her "best friend."

Jenny, another adorable classmate who loved Caleb.

Star Wars at Legoland!

2011-06-14T14:21:00.000-07:00

Last week we decided to take Caleb to Legoland to celebrate the fact that they combined 2 of his favorite things in the galaxy - Legos and Star Wars!!! I'm not sure who had more fun, Caleb or us watching him revel in all the Lego Star Wars glory. It really was amazing to see so many miniature scenes from all the movies made out of Legos. It was also incredible to see how many thousands of bricks went into making each one.

Meeting Lego Darth Vader. Caleb gave him a "high two" ('cuz they only have 2 digits :)

Daddy and Caleb decided to take on Chewie and R-2

Check out that right hook!

Last Game of the Season

2011-06-05T21:17:00.000-07:00

Caleb had his last Miracle League game. He ended on a high note - a HOME RUN!!! We had such a great season and are looking forward to playing again in the Fall.

Caleb doing his infamous bow with Coach Matt.

Caleb with his trophy. He was so proud :)

Here's the end of Caleb's Home Run

FIELD TRIP!!!

2011-05-21T16:24:00.000-07:00

A couple of weeks ago Caleb got to got to the Sea Life Aquarium at Legoland with his Kindergarten class. I was lucky enough to be able to go with them to help supervise some of the kiddos. We had tons of fun and can't wait to go back.

Caleb pondering what to build with the legos

Taking a moment to say "cheese" with his buddy, Kelsey.

This was, by far, Caleb's favorite part. While we were visiting, there was a scuba diver in the big tank hanging out with the fish. Pretty cool!

Caleb touching the starfish with the help of Mrs. Salmon, his aide.

Peek-a-boo!

Crazy Hair Day

2011-05-19T21:23:00.000-07:00

We decided to go with the Darth Maul look!

Caleb with his friends Kelsey and Sophie. They have a sort of Kindergarten love-triangle :)

Here's looking at you, kid.

Sorry

2011-05-19T20:34:00.000-07:00

Just wanted to apologize to all of Caleb's fans for being so absent lately. I kinda let the whole blogging thing go by the way-side because I wasn't so sure how many people actually followed it. Then at a Miracle League game last weekend, a woman came up to me and said, "Are you Caleb's mom? I just wanted to tell you that I saw his blog and just LOVE it! Thank you for sharing him with us like that."

And with that, I remembered why I had started this little bloggy-thing in the first place. To share our wonderful, amazing, and inspiring little boy with the world. To give you a glimpse at the joy that he brings to us each and every day. To show other families who may be getting a new diagnosis that there is so much happiness to be had with these precious gifts we've been given.

So...

I am recommitted to posting more often!

Miracle League

2011-04-06T20:52:00.000-07:00

A few weeks ago Caleb joined a Miracle League team here in San Diego. It is a wonderful organization that lets children with disabilities to play baseball. Each child is provided with a 1:1 buddy to help them with whatever they need. Every child that gets up to bat scores, and every game is tied. Rules don't apply to these baseball games, so you see things like 3 players on 3rd base at the same time, a foul ball that's counted as a "line drive", and a "home run" that was barely even a bunt. There is an amazing guy who volunteers each and every Saturday to be the announcer for all the games, and he is hilarious, too. He absolutely makes the games entertaining for everyone. Enjoy some of our Miracle League moments so far!

Caleb and his friend, Hunter, ready to play ball.

Hanging out with Papa Mickey

This is Caleb's Buddy, Gabriella.

Here's his team - the Twins.

I just love this picture of Caleb :)

Passing time in the dugout. And how does he amuse himself? By playing with Gabriella's hair... OF COURSE!

Taking a moment to pose for the camera as he rounds third base.

Wait, wrong way, Caleb!

Here's Caleb as he crosses home plate. Watch carefully for the bow as he scores.

Cousin Hayden Singing

2011-03-17T16:49:00.000-07:00

So I get to brag about Caleb often! Now it's time for me to brag about my nephew, Hayden. He is 12 years old and sang at a talent show for his school recently, and surprised everyone with his amazing rendition of "Feeling Good." I have to say that Jeff and I gathered around the computer to watch it and as soon as he started singing, both of our jaws completely dropped to the ground. We had no idea just how good he is!

Anyway, check out Caleb's cousin and help us get this thing to go viral, and pass it on!

Adaptive Skiing at Big Bear

2011-02-15T22:38:00.000-08:00

Last week we had the wonderful opportunity to go skiing. Big Bear has an adaptive ski program and we were able to go up with a group of people. What an amazing opportunity!!! I can now honestly say that I skied a black diamond with my son! When I took him I thought he would be on the bunny slopes the entire day, but it turned out it was the real deal. He had two volunteers with him that took him on the ski lift and would then take him down the real mountain. The second half of the day I got ahold of some skis and took some runs with them. It was AWESOME!!!

Caleb ready for the slopes (luckily we didn't have to use the giant jacket)

Getting excited to see the snow for the first time.

Mom and Caleb ready for the snow

Caleb touching snow for the first time

Here's some video of him coming down the slopes

That's Caleb in the middle of the ski lift.

So excited to ski with Caleb!

Thumb's up for another run

The view from the top of the mountain. BEAUTIFUL!

Here he is in action.

Great day!

The aftermath.

MDA Boot Camp

2011-02-13T14:59:00.000-08:00

Last week Caleb got to go to do his first duty as the official San Diego MDA Goodwill Ambassador at the CA Firefighter Boot Camp. This is where firefighters learn more about why and how to "Fill the Boot" for the MDA. Caleb was obviously there to help out with the "why" portion - hopefully none of them listened to his version of "how" because it certainly would entail using a lightsaber and the force to get people's money in the boot. It was a great day with a ton of amazing people!

Ready to schmooze.

Posing with the National Goodwill Ambassador, Abbey Umali.

Racing!

Caleb decided he wanted to say a few words up on stage.

He said, "Hello everybody. Well, that's all I wanted to say."

Posing with some recipients of one of the awards given out.

Finally, time for a lightsaber duel with Abbey

Abbey's mom, Wendy, wanted in on some of the action, too.

One more feel of Abbey's hair before it's time to say goodbye.

How Many Muscles Does it Take for Caleb to Walk?

2011-02-12T07:07:00.000-08:00

I know it's been a looooong time since I've posted much on the blog, but I thought you would want to see Caleb's latest trick - WALKING!!! It's just another way our amazing boy has reminded us that anything is possible.

There is music on the video, so you may want to pause the music on the right to hear it better.

2011-01-11T21:37:00.000-08:00

I am happy to report that Caleb is doing really well. He is getting his energy back and is slowly but surely gaining some weight back, too. Although our time in the hospital was challenging, to say the least, we also had a lot of fun moments, too. Here are some of those moments.

Make sure to pause the music on the right to hear Caleb singing better!

The Most Challenging Week of Our Lives

2010-12-25T22:34:00.000-08:00

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

2010-12-10T22:06:00.000-08:00

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?

2010-12-05T21:32:00.000-08:00

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

2010-12-05T19:30:00.000-08:00

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!!!

2010-11-24T21:52:00.000-08:00

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

2010-11-24T21:42:00.000-08:00

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

2010-11-19T21:32:00.000-08:00

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

2010-11-11T08:38:00.000-08:00

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

2010-11-10T11:32:00.000-08:00

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

2010-11-06T22:23:00.000-07:00

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!!!

2010-11-03T20:55:00.000-07:00

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

2010-11-03T20:15:00.000-07:00

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

2010-10-22T06:17:00.000-07:00

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:

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."
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!

2010-10-18T09:40:00.000-07:00

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

2010-10-17T21:30:00.000-07:00

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

2010-09-26T16:13:00.000-07:00

Caleb found a new setting on the drums!

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

2010-09-25T09:48:00.001-07:00

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

2010-09-25T09:29:00.001-07:00

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

2010-09-24T19:47:00.000-07:00

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

2010-09-15T13:50:00.000-07:00

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!

Troopers, The ER, and Cake!

2010-08-28T21:48:00.000-07:00

We had Caleb's Birthday party last weekend. It was an absolutely fabulous and fun party. Tons of Wonderful family and friends here to celebrate his amazing 5 years on this Earth. Caleb decided he wanted to be Darth Maul, and we were also fortunate enough to have 3 Troopers come to protect the party!

As I said, it was so much fun... until we had to rush Caleb to the ER because he lost all coloration in his face, was clammy, and saying he needed to throw up. We thought it may be a low blood-sugar episode, since he had some a few years ago. We gave him some juice, but he just wasn't coming around like he had in the past. So we packed him up and left in a huge hurry, only to have him make a huge turn-around as soon as we stepped foot in the doors of the ER. Turns out we just needed to give the sugar a little more time to kick in. So, we went back home, ate some cake and enjoyed the rest of the festivities.

Definitely a birthday to remember!

Darth Maul and the Troopers!

Watch out for this Sith Lord, he's pretty tough.

Caleb decided to give the Troopers a tour of the house.

He wanted to show them his weapons.

Next, Caleb wanted to play the Wii with them.

This was about the funniest thing I've ever seen!

Time to defeat the Dark Side... in the form of a Pinata

After the pinata, we decided to have a group photo, but notice the absence of the birthday boy and his parents. We were inside giving him some juice because this is where he took a turn for the worse.

We thought he was coming around enough to take the picture, but after seeing the photo, boy were we wrong. Right after this pic was when we rushed off to the ER.

Someone was kind enough to take a picture of the cake I decorated for him :)

We got back in time for Caleb to enjoy some cake and ice cream. That helped even more with him feeling better.

Happy family! We were so relieved he was OK.

Darth Maul even helped clean up!

1st Day of Kindergarten!

2010-08-26T21:40:00.000-07:00

Monday marked a BIG milestone... the first day of Kindergarten. Which means the first day of Elementary School. Which means PTA, here I come! We're all adjusting to new routines, but so far so good.

Ready to go!

Smiling for the camera from across the room.

That's his aide, Annick, sitting behind him.

That's his teacher, Mrs. Miller, in the front of the room.

Teaching the class about his Muscular Dystrophy
and his equipment with his PT, Melissa.

Aww, mom. Do you really have to go?

Happy Birthday, Little Man!

2010-08-26T20:38:00.000-07:00

Caleb turned 5 yesterday. He was born 6 weeks early at 8:34 am on August 25th, 2005 weighing in at a whopping 4 lbs even. From the moment he was born he had an amazing way of touching people's hearts. He continues to inspire others every day. I thought it appropriate to reflect on how just far this wonderful little boy has come.

Just Born

Caleb needed a little help breathing for the first couple of days via C-PAP

Yay, tubes out. Check out how tiny he was!

Mommy getting to feed him!

Little Peanut

Caleb's joints were so tight we had to create mini-bolsters so he could stretch a little.

Chillaxin'. Trying to catch some rays to make the Jaundice go away.

I HEART CALEB

Sweet boy.

Caleb Balleting

2010-08-14T10:22:00.000-07:00

Here's some video of Caleb goofing around :)

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

Newport, Part 1

2010-08-14T09:38:00.000-07:00

Every year Jeff's parents and the Mesirow clan take a vacation in Newport. They are always kind enough to let us join in the festivities and, maybe get a little R & R, too. It is always a good time for everyone. Here are some pictures of some of Caleb's favorite things at Newport!

Caleb, Braden and Dan creating a battle-zone for the army guys.

Figuring out his strategery.

Watching Kellen run in the water.

Kayaking with Papa

Buddies

Surfing with Daddy

Fishing

He's very serious about his fishing.

Maybe not :)

Caleb Swimming

2010-08-07T08:26:00.000-07:00

I just never get tired of seeing Caleb swimming. He is so independent in the water. Swimming is now his main form of Physical Therapy, and he has so much fun doing it!

I think in the first part of this video he is pretending to be a shark :)

MDA Family Picnic

2010-08-04T21:26:00.000-07:00

Last weekend we had a great time at the MDA's 2nd Annual Family Picnic. Unfortunately, I forgot my camera... Fortunately, there were some other smart people that brought theirs. The highlight of the day was when the Star Wars characters showed up!!! One minute we're quietly eating lunch with a clown and the next minute Caleb is practically hyperventilating and just saying, "MOM, MOM, LOOK! MOM, LOOK OVER THERE! MOM, IT'S STAR WARS GUYS!!!"

And then... we tried to talk to them... He literally held up his balloon lightsaber at Obi Wan Kenobi... and then wheeled his wheelchair in the totally opposite direction as fast as the motor would take him and as far away as he could go. After a while of seeing the Storm Troopers playing frisbee and such, at the end of the day he finally warmed up enough to talk to them and take pictures. Now, all he can do is talk about the Star Wars guys. He really wants them to show up to his birthday party. I just hope they're not busy in a galaxy far, far away that day :)

Enjoy the stolen pictures!

4th of July Celebration

2010-07-28T16:21:00.000-07:00

I can't believe I haven't posted these! We had the most fun 4th of July this year. We went to Josh & Stormy's block party, and what crazy neighbors they have. One family has rigged a whole bunch of different bikes, ramps, and other sweet toys for kids and adults to play with. Hours of entertainment!

Caleb was so excited when we drove up and there were a bunch of kids playing with light sabors.

Well, KJ, that's one way to go down the ramp...

Caleb had tons of fun with a skateboard. Here's the King of Compensation in action, getting the skateboard up the "hill"...

Then he'd push off...

Then down the hill he'd go.

Daddy's turn to have fun. Here he is balancing on the skateboard rail.

Next the stilts...

Then the Green Machine...

And finally, some little personalized clown bicycle. Luckily there were no broken bones that night.

A little one trying out the pogo stick.

Tough Guys: Caleb and Braden

More light-sabors - this time ones that actually glow in the dark!

Here's some video of Caleb on the skateboard.

Happy Birthday, America. We sure had fun celebrating!

Padres vs. Whoever

2010-07-27T20:17:00.000-07:00

A couple of weeks ago we had the opportunity to go to a ball game with family. It was the Padres (of course) vs. some team in red. I don't think I watched a single play, but we had tons of fun.

Walking with Cousin Brooklyn

Hug Time

Playing Modified Baseball :) They came up with this on thier own.

Play ball!

Home Run!!!

Silly time in the sandbox

Taking some steps in the grass.

This is a great view from up here!

Caleb's National Debut!!!

2010-07-16T21:09:00.000-07:00

Recently the MDA decided to film a new National commercial, which begins with... Caleb! They did such a beautiful job of capturing him and all the other individuals to inspire others to "Make a Difference. Make a Muscle."

Click here to check it out!
Make sure to pause the music on the right to hear it better.

Funny story about the commercial. When I got the link to watch it, I said to Caleb very excitedly, "Caleb, you get to be on TV!" Caleb responded very nonchalantly, with a slight sigh, "Again?" Apparently he's an old hat with this fame thing.

3rd Annual Poker Tournament to Benefit Caleb's Crew

2010-06-30T08:51:00.000-07:00

Last weekend Uncle Ryan hosted the 3rd Annual Poker Tournament for Caleb's Crew! About 40 people showed up, donating their buy-in and playing for some pretty amazing prized (all donated). It was tons of fun and I think Caleb picked up a new poker face :)

Caleb had a different idea of what to do with the poker table at first... eating dinner and playing legos.

The competition sizing each other up.

Caleb takes a moment to pretend he's Indiana Jones swinging on a rope.

The crowd getting some door prizes and meeting Caleb, the inspiration for the evening.

Time to play.

Caleb goes ALL IN!

We have a new chip leader.

Thank you Uncle Ryan and Auntie Cassie, for hosting such a wonderful event! We can't wait til next year.

Flying High

2010-06-29T10:07:00.000-07:00

WEEEEEEEEEE!!!

Caleb's Commercial Debut

2010-06-29T08:52:00.000-07:00

Last week we had an appointment scheduled for Caleb at the muscle disease clinic. At these appointments he is seen by a bunch of specialists (usually the neurologist, pulmonologist, orthopaedic surgeon, PT and OT) that monitor him and address any issues. A couple of weeks ago the San Diego MDA contacted us and said that the MDA was making a new NATIONAL commercial and would be in town filming, and would we mind if they filmed Caleb's Dr.'s appointment as part of the commercial? Of course we wouldn't mind.

So, at the appointment we got treated a little like movie stars - make-up and hair, and a wardrobe consult for both of us. Caleb was so funny about getting make-up - he kept asking if he was "pretty"? Anyway, it was fun to be part of the production, but it did make a long Dr.'s appointment even longer.

I'll keep you posted as to when the finished product will air. I think it will be on local stations around the time of the Telethon (Labor Day weekend).

Here are some pictures from the day... Mostly Caleb photography :)

Dr. Grosmann getting some make-up before our appt.

Harry, the Director

Some of the camera crew!

Now for the real appt. Checking Caleb's lung capacity.

Caleb with some of his fans!

Auntie Shana's (LAST) Graduation!!!

2010-06-28T21:14:00.000-07:00

A little while ago Auntie Shana graduated (for the final time) from her pediatric residency in dental school. That's right... she was crazy enough to get a POST-doctorite. Unfortunately, UCLA is holding her diploma hostage until she completes another month or so of work in the clinic. We're still very happy for her for completing a full decade of schooling to complete her dream of becoming a pediatric dentist!

Caleb said he was surfing :)

Auntie Shana and her Posse

Sisters!

And the Caleb photography begins...

Who the heck is this guy? Caleb must've liked his hair.

Caleb's "Graduation"

2010-06-27T21:50:00.000-07:00

Last week Caleb "graduated" from preschool, and is now officially a Kindergartener. Here are some pictures from the day.

Time for some Caleb photography

Apparently I'm not the only parent that gives her kid the camera to keep him occupied.

I think the teachers were ready for summer!

Double Digits!!!

2010-06-27T20:58:00.000-07:00

This weekend Jeff and I celebrated our 10 year wedding anniversary. That's right, we're officially in the double digits! Woohoo!!!

I thought it would be fitting to make a list of some of the things we have experienced in the last decade together.

Doctorite in chiropractic;
Master's in Speech Pathology
bought our first house, which happened to be our 9th move as a couple;
Jeff opening his own practice;
Amy working for 2 different school districts, in 4 (soon to be 5) different schools;
adopted a cat;
adopted a cat for our cat;
countless hair styles for Amy;
bought and sold about 10 cars;
had 2 cars totalled;
an 8 week hospital stay;
the birth of our first (and only thus far) child;
got a diagnosis of Muscular Dystrophy for Caleb;
raised over $50,000 for the MDA;
made countless connections with people in our community and realized how much support we are surrounded by constantly;
Jeff and I are 10 years more connected as a couple and we are looking forward to a lifetime of anniversaries together!

San Diego City Chase, 2010

2010-06-26T09:04:00.000-07:00

OK, I know this blog is mostly devoted to Caleb, but it's time for a little "& Company" post. Last weekend I participated in the San Diego City Chase with my friends Alicia, Crystal and Brook. It was SOOOO much fun!!! The event consisted of figuring out clues to go to multiple destinations all over downtown San Diego and complete a task at each destination. It was kind of like a big-kid scavenger hunt. To officially finish, you had to get 10 City Chase points.

Along the way we met up with John, a friend of Alicia's, who was completing the City Chase as part of a "bucket list" he created. It was so neat to be part of his journey, and gave us all a little extra motivation. Click here to visit his blog and read more about his "6 ft. above ground" endeavors.

Here's some video of John and Crystal pole dancing! So funny!

John and his City Chase partner finished the race, which was good cuz he actually got to check 2 things off his list. But, the rest of us didn't get the 10 points. Which means we'll have to try again next year!

Beach Days

2010-06-25T22:36:00.000-07:00

We've had some fun lately at Moonlight Beach in Encinitas. Here are some pictures capturing some of Caleb's favorite beach moments.

Swinging with Daddy

Family swing time

Kodak moment with Mommy

Racing down the hill with Daddy's help

Look how fast I can go!

Can we do that again?!

Time to recharge after all that racing.

Check out my popsicle.

Do you think this stick could be a light-saber?

Time to relax at the ocean with Papa... just don't drop me!

Enjoy the little moments.

Caleb's New Sand Table

2010-06-25T21:54:00.000-07:00

Recently we all had fun building Caleb a new sand table for the backyard. Caleb love helping sand the wood and painting the table. Most of all, he loves playing with the finished product!

Found some pictures on the camera that I forgot to post

2010-06-05T15:53:00.000-07:00

A Beautiful Exchange

2010-05-30T19:25:00.000-07:00

Tonight we went for a walk in our neighborhood. It was such a beautiful evening, we just needed to get some fresh air. As we were approaching two young girls, about 9 or 10 years old, Caleb joyfully said, "Hi!"

They said, "hi," back with the typical hesitancy and stares as they looked at this 4-year-old in this strange contraption.

As he continued towards them, Caleb then said, "Do you know what this thing is?" as he rubbed the handles of his walker.

They replied, now with smiles on their faces, "No."

Caleb said, "It's my walker. I need to use it 'cuz my muscles work differently."

"Oh, that's really cool. I like the color," one of the girls said.

As Jeff and I stood proudly watching this exchange, giant grins came on our faces. What more could we ask for than for our son to be comfortable and confident in his differences, and thus putting others at ease. The maturity and wisdom Caleb displays never ceases to amaze me. He may only be 4 years old, but sometimes he truly feels like a much older soul.

A Singing Montage

2010-05-25T17:46:00.000-07:00

We have had a very musical household lately. Here's a little tribute to Lady Gaga, The Black Eyed Peas, and more!

Make sure to pause the music on the right to hear Caleb better.

Caleb's Original

2010-05-25T17:26:00.000-07:00

Here is a Caleb original tune. Note the new way to hold a ukuleli :) Right before I turned on the camera, Caleb exclaimed, "Hey mom, I'm getting good at this! I wasn't good before, but I practiced and practiced and now I'm good!"

"The Zuga-Zug, 1,2,3"

We might need to work on the ending a little :)

The Little Drummer Boy

2010-05-24T08:23:00.000-07:00

Papa Mickey just gave Caleb his old electronic drum set. Check out Caleb ROCKIN' OUT!!!

Be sure to pause the music on the right to hear him better.

Caleb Loves to Sing!

2010-05-01T08:37:00.000-07:00

Holy Moley! Long time no blog!!! Apparently time really does fly.

Here are some videos of Caleb singing. He sings all the time now, it's so fun. These are just a few of his "regulars". He may not always get the words right, but the boy's actually got some tune :)

Make sure to pause the music on the right to hear him better!

I Wanna Single Ladies

Indiana Jones

Star Wars!

A Lot of Steps

2010-04-04T20:16:00.000-07:00

Since Caleb has become more independent with taking some steps, we decided to try out his "red walker" again. Although it isn't a safe way for him to get around (if he falls he has no way to catch himself), we have been blown away with how well he has been doing with this and how far he can get around! He's so excited to show off his new found skill to anyone who's willing to watch.

Be sure to pause the music on the right if you want to hear Caleb better.

The Four Questions

2010-04-02T21:03:00.000-07:00

Happy (belated) Passover! A few nights ago we had the opportunity to celebrate Passover at a Seder hosted by some family friends. Jeff and I have attended this Seder annually for about 7 years now. This year was Caleb's first year since he was an infant. One of the traditions is for the youngest at the table to read, "The Four Questions." I'm not sure how many Seders had a 4-year old reading the 4 Questions, but here is Caleb doing his best (which is pretty darn awesome, if you ask me :) By the way, he read this in front of 47 people!

Make sure to pause the music on the right to hear Caleb better!

Why Did the Chicken Cross the Road?

2010-04-02T18:07:00.000-07:00

Caleb's really been into telling jokes lately... although he doesn't quite get the art of joke-telling, yet. Here are some examples of Caleb jokes:

Why did the chicken cross the road? Cuz there was a shark under it! Haaaa!
Why did the chicken eat the spaghetti? Cuz it was so hungry! Haaaa!
There's a banana on the TV. Get it, mom? A banana on the TV! Haaaa!
A monster truck. Get it? A monster truck! Haaa!
Why did the elephant find a cheeseburger? Because the cheeseburger talked! Haaa!
Why did the chicken cross a car? Because the chicken thinked it was a walking place! Haaa!

They might not make any sense, but they end up cracking everyone up for that very reason :o)

Disneyland!

2010-03-20T17:46:00.000-07:00

A couple of weeks ago Caleb and I met up with some friends at Disneyland. It was Caleb's first time. He was hesitant about seeing all the BIG characters, so I told him he didn't have to talk to them if he didn't want to. I forgot to take into account how LOUD all the rides are, so he was pretty miserable on almost all the rides. When he would get nervous about stuff, I would try to reassure him by telling him things weren't real.

About halfway through the day, we were waiting in line for the Buzz Lightyear ride (the only ride that didn't have a separate wheelchair access). All of a sudden, Caleb started crying and saying, "I want to get out of here! Please, can we go?!" So we turned around and left. When we got out, I said, "Caleb, I think we need to have a talk about Disneyland. Did you know that everything in Disneyland is pretend?" Caleb looked at me with bright eyes and said, "Ooooohhhh! I thought we were really going to blast off into space! OK, I want to do the Buzz Lightyear ride." So from that point on, he had a decent time.

His favorite ride was at the end of the day... "It's a Small World." He's still singing that dang song! He was happy coasting along slowly in the boat, but it was still too loud for him, so I had to cover his ears the whole way. Next time we're bringing ear plugs!

Silly Time :o)

2010-03-20T09:21:00.001-07:00

Oh, I wonder what happened to Caleb?

Ah, it was a trap...

He's gonna "fire" me!

Ahhhhh, he got me.

Caleb's Crew, 2010

2010-03-07T17:52:00.000-08:00

On Sunday, February 28 (I can't believe a week has flown by already!) we participated in the 14th annual San Diego MDA Stride & Ride. The night before, it was pouring rain. I kept looking at the forecast and everything was calling for sun, but I just couldn't fathom how it would clear up in time for the walk. Luckily all the forecasts were right, and the weather could not have been more beautiful.

Over 1200 people participated in the event, 125 of which were there to support Caleb's Crew! I am absolutely delighted to tell you that Caleb's Crew raised an astounding $20,000!!! We were overjoyed that we were able to beat last year's numbers!

We were fortunate to have a photographer amongst Caleb's Crew, who documented the day beautifully. Thank you soooo much, Trevor! Below are a few of the pictures he took. To see the rest, just click here to see them on his website (www.trevorhawkinsphotography.com/caleb).

I love this photo of Jeff and Caleb before the walk!

Caleb was so excited about the cake the Grammie and Papa brought.

Happy boy :)

Look at the sea of red Caleb's Crew shirts! Amazing demonstration of the support we have from our family and friends.

Caleb loved holding Cousin Zoe's hand.

Gorgeous Day! Beautiful cause! What more could we ask for?

Caleb wanted to say, "Thank you," but then got embarrassed and just said, "Uummm," then turned his head. It was very cute.

Caleb's Crew gettin' our groove on after a fantastic walk!

A Delicate Balance

2010-02-24T09:54:00.000-08:00

A couple of days ago Caleb was sitting on the couch when he asked, seemingly out of the blue, "Mommy, when I get older and bigger I won't have Muscular Dystrophy any more?"

My heart was immediately in my throat, along with a flood of possible answers, and questions of my own. How do I possibly convey to a 4-year old that this is not something he will outgrow, that he will have likely MD for the rest of his life unless by some miracle there is a cure... How do I possibly express this while still giving him hope that anything is possible and that life is still worth cherishing, despite the challenges he will face... How do I look into his bright eyes and tell him that because his body doesn't produce ONE STINKING PROTEIN, his muscles will never work the same as other people's and he very likely won't live to be an old man?!

The flood of questions, answers and emotions coursed through me in mere seconds. Before I knew it, Caleb was talking about Lego Star Wars, without me being able to say a single thing. I knew this was a vital conversation that we needed to have, so I brought him back to it.

"Caleb, you asked a very important question about Muscular Dystrophy, and it's time to talk about it."

"What, mom?"

"Well you asked if you wouldn't have Muscular Dystrophy when you get older and bigger. But Muscular Dystrophy is part of your body, and it's something that you'll always have, even when you're bigger. So you'll always need some help with things like walking, and will need to use things like walkers or wheelchairs to get around."

"Mom, I think when I get bigger I won't even use a walker."

"Oh really. What will you use, then?"

"I think I'll just use my legs and feet and walk all by myself."

As the tears welled up, the only response that seemed remotely close to being correct was, "I sure hope you're right, Caleb."

I know this is just the beginning of questions we will have to answer for our amazing and insightful little boy. God willing, some day he won't be so little any more when we have to give him more answers. We may not always have the right answers, but all we can prepare ourselves for is to try our best to find the delicate balance of helping our son face his reality while maintaing hope and joy for his future.

Happy Valentine's Day!

2010-02-14T09:20:00.000-08:00

Look, Caleb's Famous... Well, Not Really.

2010-02-14T09:13:00.000-08:00

Another parent is putting together some video of kids with Ullrich so that doctors can better recognize the signs and symptoms to come to a proper diagnosis. Here's the video we put together of Caleb.

Caleb's Bad Guys

2010-02-13T08:58:00.000-08:00

Remember Little Kangaroo? If not click here to find out a little more about our friendly marsupial. Little Kangaroo has disappeared and has been replaced by Caleb's "Bad Guys". Caleb usually has 10 with him, but sometimes there are as many as 20. They are his friends and protect him from other Bad Guys that are trying to get him (I think in his mind all the guys that fight are "bad" guys - he doesn't quite get the idea of good guys or superheroes). They can all fly, but don't have swords or guns. One has laser beam hands, another has boosts in his feet. Also, next time you're around Caleb, be sure not to make him angry - he now has fire that comes out of his hands and ice that comes out of his mouth (he says "I will fire you!").

Thank You, Dr. Reinhardt

2010-02-13T08:43:00.001-08:00

Dr. Reinhardt has been Caleb's pediatrician since the day we brought him home from the hospital. She has been with us through his successes, and some of his toughest times; through the diagnosis and learning with us what it all means. She has always worked with us to create a plan for Caleb, realizing that protocol didn't always work for him. It has been clear to us that she was not only caring for Caleb as a patient, but for him as a little boy, and for us as a family. She has been a wonderful pediatrician for Caleb.

But, Dr. Reinhardt is moving out of state to be closer to family. Although I completely understand her motivation for leaving, she will be missed. Her future patients are very lucky to have her.

Good luck in your endeavors!

Caleb Walking!

2010-01-17T18:25:00.000-08:00

Check out Caleb taking 10 steps independently!

Silly Moves and Singing "The Firing Song!"

2010-01-17T17:54:00.000-08:00

Here's Caleb showing off some silly moves and making up a song he calls, "The Firing Song!"

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

Caleb Reading Some More

2010-01-16T21:17:00.000-08:00

Caleb's reading has been really coming along lately. He is sounding out words regularly and is starting to understand that when he practices enough, he can read FUN books and so he can learn about things. It's really exciting to see him expanding in this realm. Here's a book that he's been practicing lately. It gets harder for him later in the story (it's 40 pages!), and we haven't made it all the way through, but we're amazed at his memory for the written word!

Don't forget to pause the music on the right to hear him better.

Bowling, bowling, bowling!

2010-01-05T20:58:00.000-08:00

A couple of weeks ago we got to spend the day bowling to celebrate cousins Braden and Bella's birthdays. We had so much fun! And if you're wondering, "How the heck does a kid with muscular dystrophy go bowling?" ... there are ways!

The Birthday girl and boy.

The bowling ally has adaptive equipment!

What do you think, Papa? Is it a good one?

Showing off some standing skills.

Is that one a strike?

Gotta get that 6-10 split!

Doing the chicken dance.

It's all fun and games...

til someone gets sad :(

Apparently, Caleb wasn't done dancing... he wanted to dance on the tables.

Caleb - The Frog and The Fish

2010-01-04T18:53:00.000-08:00

Caleb has been doing some pretty spectacular things in the water lately. He is mostly independent with his maneuvers/stunts. Enjoy!

I don't think I'll ever get tired of seeing how much he can do in the water and how much freedom it gives him.