Check Out the Latest White Belt!!!

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.

You've Got a Friend in Caleb

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.

Disneyland

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.

Caleb Swimming, Yet Again

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

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 :)

Caleb Sitting Up!

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!

Adaptive Skiing at Big Bear

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

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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.

How Many Muscles Does it Take for Caleb to Walk?

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.



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!

Caleb's New Sand Table

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!

A Lot of Steps

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

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!

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

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 Walking!

Check out Caleb taking 10 steps independently!

A Mom Can Brag A Little, Can't She?

So, I don't know that I'll ever get to brag about Caleb hitting the winning home-run, scoring the winning goal in soccer, or breaking boards in karate. But this is what I get to brag about: My 4-year old can read!

He's doing so well with reading, and is even starting to sound out words he sees on signs and stuff.

Thanks for not judging me too harshly for being braggy :)

Caleb Swimming Some More

Caleb's been doing AWESOME in swimming lately. He's actually propelling himself forward in the water with his arms, and can go the entire width of the pool holding his breath!

My goal in him going back into swimming was just to give him water therapy. I never thought he'd ACTUALLY start swimming.

Caleb Lifting His Head!!!

After 4 years of working at it, Caleb is finally able to lift his head! He calls it his "new trick." He started playing with it about a week ago (right after his birthday), and is just beginning to feel very comfortable with it.

This has been a milestone that we have been hoping and praying for a long time. We couldn't be more pleased with his tenacity at trying the seemingly impossible. We have learned that the only time to say "never" with this kid is in the phrase, "Never underestimate him!"

The Popcorn Porpoise

Here's a new video of Caleb swimming. Recently he has gotten much more confident in the water and is extremely comfortable (sometimes a little too comfortable). One of his favorite things to do is pop up and down under the water. He's kind of like a popcorn-porpoise. He is also beginning to actually use his arms to move in the water, and dives down to get toys in his own special way (the king of compensation in action!). We are all amazed at how quickly he has made this kind of progress - everyone except Caleb, that is. According to him this is all just so much fun.

It is such a joy to see him so independent in the water. It seems like such a natural environment for him!