The Treasure Hunt

On Friday we went to Caleb's school to celebrate the start of his Spring Break with a "Treasure Hunt" (a.k.a. the PC term for an Easter Egg Hunt). That morning Caleb told me, "I don't want to go on a treasure hunt." When I asked him why, he said, "Cuz I don't want to be a pirate."

He quickly changed his mind when he found out that we were going to go find prizes like toys and candy. He had a lot of fun playing with his friends and finding all the treasures.

This is Caleb making the egg bag for the hunt.

Here's Caleb's new "cheese" face. I'm ready to go, mom!

This is one of Caleb's school buddies, Isaac. Everyday he comes home from school and says he played with Isaac.

Here's an egg!

Look Miss Kristin, I put the egg in my bag.

Here's Caleb making his "cheese" face again to show me he got the golden egg.

I guess the "cheese" face is better than him pointing at the camera and yelling at me all the time.

Playing in a car after the Treasure Hunt.

One more "cheese" face with his friend, Molly.

Caleb's New Friend

A few nights ago Caleb and I stopped by a neighbor's house just to hang out. They had this Elmo doll there that Caleb absolutely loved! So they let us borrow it for a while (I think they were actually pretty happy to get it out of the house to get a break, but oh well). We had gone to their house with me pulling Caleb in the wagon. On the way home, Elmo stood in the wagon and "talked" to Caleb. The cutest thing was that Caleb talked back to Elmo like it was one of his friends the whole way home. I tried to get some of it on video, but as soon as the camera was on, he wouldn't talk anymore. This was the best I could get... Still pretty cute :)

A Couple of Cute Stories From the Walk

Some cute stories were relayed to me about a couple of kids that participated in the walk. The first comes from my friend Maddy about one of Caleb's girlfriends (yes he has a few), Livi. At the end of the walk Marilyn had handed out cookies to everyone with an edible picture of Jeff, Caleb and me on it. Maddy noticed that Livi was eating her cookie a little funny - she was just eating the outside and kept eating in a circular pattern. When it was just our faces on the cookie, Livi looked up at Maddy, who reassured Livi that it was OK to eat our faces. She ate Jeff's face first, looked up at Maddy, got some more reassurance, ate my face, but was then very hesitant to eat Caleb's face. In the end she ate it all, but told Maddy with a big smile on her face, "I have Caleb in my tummy now."

The second story brought tears to my eyes. One of my students (who's not even on my caseload anymore) showed up to the walk with his entire family. It touched me deeply to see them all there supporting Caleb's Crew. Today his mom told me that when it was announced how much money we raised, he turned to her and asked, "Is that enough to cure Caleb's disease?" She responded that it may not be enough to cure it, but it was going to make a BIG difference. He then said, "Then I'll just keep running." What an amazing heart this boy has.

The Spa is Back in Commission!

So, the spa was out of commission for the winter, but it's back up and running! You may have seen the other Luke Spa-walker videos from last year, but I can never get enough of seeing Caleb being able to walk independently.

Caleb's Crew ROCKS!!!

All I can say is WOW!!!

This year was an amazing year for Caleb's Crew. Around 100 people showed up to walk with us, and many more were there in spirit - some missed the event due to distance, previous engagements, and others due to the time change. Beyond that, I am so happy, astounded, and completely giddy to announce that this year Caleb's Crew raised over $17,000.

That's right I said over $17,000!!!


This means that Caleb's Crew has raised $30,000 in 2 years to fund research for Ullrich!


The Stride & Ride couldn't have taken place on a more beautiful day. Unfortunately, Caleb was the biggest crank-bucket ever. With the time change, and refusing to eat, he was not in the mood for all the festivities. He kept telling me, "I don't want the party. I want to go home." He got a little better after eating a few bites of a granola bar and drinking a few sips of juice. What really did the trick was eating a cookie after the walk...THEN he was happy!


For me, the event ended up being a little more emotional than I had expected. Shortly after the walk began, a family friend came up to me and said with pure joy in her voice, "Congratulations, Amy! This is truly incredible." I then looked behind me and saw the sea of Caleb's Crew shirts. It was such a visual reminder of the extraordinary amount of support that we have received over the years, and was just moved to tears.


Below are some pictures from the walk.



This is a video of Jeff and I speaking to the crowd after the walk. You definitely need to pause the music on the right to hear it.




What a generous and supportive community we are surrounded by. I am humbled by the magnatude of responses we received. Although we got a handful of large donations, a VAST majority of this money came from A TON of small donations. This experience has proven to me once and for all that it's not the amount of money donated, but the amount of PEOPLE who donate!


Thank you to everyone for being a part of this amazing experience. We are eternally grateful for all the support we have received to make a difference in finding a cure for Ullrich Congenital Muscular Dystrophy.

Caleb The Song Writer

So much to post, so little time...

I wanted to get these videos up cuz they're just too cute. Lately Caleb has been making up his own songs about anything and everything. I finally caught it on film! Caleb deleted the first one, which was about a rabbit. Luckily I got three more. I don't expect you to watch all of them, but each one is a little different and can bring a smile to your face.

Make sure to pause the music on the right to hear the video!

This one is about a panda bear.

This one's about an elephant.

This last one's about a dog.

Sorry that we've been MIA...

So our computer totally pooped out about a week ago. It was so bad that we had to get a new hard-drive. So that meant that Jeff would bring home his tempermental laptop from work, pretty late in the evening, and it would sometimes choose not to work.

Well, we're up and running again, but lost everything that was on the computer before, including some adorable pictures of Caleb playing at the Carlsbad Co. Stores :( Sometimes we take Caleb there just to give him some wide open spaces to run around in his walker. That day he ended up playing a game of chase with a little boy for about 20 minutes...it was so cute, but you'll just have to take my word for it since I have no physical evidence.

There will be more to come soon, since the MDA walk is tomorrow. I'll be sure to take pictures :)