Swimming Again!

After a 2 year hiatus, we decided to get Caleb back into swimming. There is no doubt about it, he is LOOOOOVING it! Although, I'm not sure who is getting more enjoyment, Caleb or Brett. We were so pleased to be able to get back on Mr. Brett's schedule - he has an absolutely wonderful way of finding the balance between pushing Caleb to his limits while making him successful at everthing he does. They really make a great team in the water!

This One's Really His!

Here's some video of Caleb learning to drive his wheelchair! Yes, this one is his very own...It even has his name embroidered in the seat!

At the dinner for the Outback Golf Tournament, there was an annual wheelchair race, which I mentioned in that post. What I didn't tell you is that at the end Caleb was very upset and crying. I took him outside to see what was wrong. He told me he was sad because he wanted to be in the blue wheelchair like the other boy, that he could drive all by himself. I told him that we would be getting him a wheelchair very soon that he would get to drive all by himself. He looked up at me with some residual tears in his eyes and asked, "And it's BLUE?" Luckily I had ordered the blue one (since purple was the only other choice).

When he first saw this chair, I think he was most excited that it was BLUE! He's really loving the freedom that this gives him. He especially likes to drive when he's up tall. He did have one little mishap today - he pinched his hand between the chair and a table a little, but he's fine. He has to practice at Physical Therapy for a little longer before it comes home - they need to make sure he's safe in it in all sorts of situations and surfaces. In the meantime, Jeff and I have to figure out how to get it home.

All we need now is a wheelchair accessible van, and an accessible home... You know, just a couple of small things.

Potty LEARNING!

Just wanted to give ya'll an update on Caleb's Potty Training...or should I say Potty Learning.


He is no longer peeing 21 times a day...he still goes a little bit quite often. I've learned to listen to him more and not just sit him on the potty all the time. He is definitely starting to notice when he needs to go and/or if he has already gone.


He managed to stay dry all day despite a Dr.'s visit, a trip to the orthetist (for his "special shoes"), and a trip to Toys R' Us to get a prize for telling me so many times that he needed to go to the potty. He went at each one of those places! I think he's actually getting it. Yippee!!!


We have all learned a lot through this milestone:

Caleb is learning to be more in tune with his body;
I am learning that this is a PROCESS, and to relax a little bit;
Jeff is learning that although I may be a bit neurotic sometimes, there is still a method to my madness.


Thanks for crossing your fingers...it's working!

Potty Training - Day 1

10:00 - come home from PT & OT; pee-pee on the potty; underwear on;

10:45 - accident while eating; Caleb doesn't even notice;

11:00 - pee on the potty;

11:15 - accident on couch (didn't notice);

11:20 - pee on the potty;

11:30 - Caleb says, "Mommy, I need to go to the potty!" Pee on potty (Yes, he's getting it!)

11:40 - accident on my lap (maybe not);

11:50 - pee on the potty;

12:05 - pee on the potty;

12:25 - pee on the potty;

12:50 - pee on the potty;

1:05 - sit on potty, no pee;

1:35 - pee on the potty;

2:15 - pee on the potty;

2:45 - accident

3:00 - sit on potty, no pee;

3:35 - pee on the potty;

4:15 - accident (didn't notice again)

4:50 - pee on the potty;

5:20 - sit on potty, no pee

6:00 - pee on the potty;

6:45 - accident, then poop on potty;

7:15 - pee on the potty;

7:45 - pee on the potty; BEDTIME!

In case you were counting, that's 21 times that Caleb peed - 6 accidents, 14 times we sat him on the potty, and 1 time initiated by him, plus 3 times of sitting on the potty with nothing. I also need to point out that all of this is with Caleb being completely dependent on us to pull his pants down/up, getting him on/off the potty, and washing his hands.

Whew!

Please, oh please tell me it will get better.

Outback Golf Tournament

We just got back from another wonderful MDA event - the 13th annual Outback Steakhouse Golf Tournament. It was a little cloudy, but that didn't take away from the spirit in all the golfers. It was a day filled with good company, fantastic food, and a lot of money raised for a great cause ($53,000 was the rough figure I heard for this event alone). In addition, the MDA announced that:

• They now have 1 cure!!! (for Pompei Disease), and
• They have 4 new treatments for different neuromuscular diseases

Although Ullrich isn't on that list, yet, this is still very exciting news because it could be in the near future. It is certainly possible in Caleb's lifetime.

Enjoy some of the photos from our day!

This is Caleb and his friend Ashley. She snuck up on him and scared him right before this picture.

Ashley, Caleb, and his buddy Alec.
Taking some time out to do a little golfing.

Caleb driving the golf cart. His favorite part of the day (and mine, too) was definitely riding all around the golf course.

Caleb and I with some of the Outback Crew. This whole day was a little ironic, given the previous post. There were tons of "Little Kangaroos" all over the golf course since Outback was sponsoring the event.

Caleb and some of the other MDA Ambassadors posing with some of the golfers.

This is a picture of Caleb "hiding" from Ashley in a game of Hide and Go Seek.

This is a picture of the annual "Wheelchair Race". Of course all the other kids competing had motorized chairs, so I got to push him this year. Next year, he'll be on his own!

We got to spend the evening sitting next to Joe Lazura, the Weatherman for KUSI.

The Newest Member of our Household

No, we did not get a real kangaroo. But meet Caleb's imaginary friend, Little Kangaroo. This has been a friend of his for a few months, now, and is apparently sticking around for a while. Here's what we know about him so far:

• Little Kangaroo is a boy.
• His name is simply Little Kangaroo; perhaps Little is his first name and Kangaroo is his last name.
• He is small enough to fit in the palm of Caleb's hand (which means REALLY tiny). However, he can apparently grow in size, as sometimes Caleb holds his paw to hop around the house.
• He lives in our house and sleeps in a tiny bed in Caleb's room, which is also invisible to us.
• Little Kangaroo is brown. However, he has been sick off and on lately and has to go to the doctor often because his fur turns gray.
• Little Kangaroo drives a car that is green with black spots.
• He works at a golf course. My guess is that he hops around picking up the golf balls and puts them in his pouch, or maybe he's a caddie. Not really sure what he could do since he's so incredibly small (not that there's anything wrong with small animals or people :) Maybe he grows in size when he's on the job... I think I'm over-analyzing this. He is, afterall, an imaginary friend.

An Unlikely Place

I'm not sure why, but I've been thinking about this moment a lot lately.

When Caleb was just over a year old we were grocery shopping one day. I know he was a little over a year because he was able to sit up independently, but only for very short periods of time, and certainly not in a moving shopping cart. So I had him in our handy-dandy "Buggy Bag" - a shopping cart cover that has about an inch of padding throughout and came with a pillow (truly a life-saver for us). We always received comments on it, because to the untrained eye Caleb always looked like he was just resting.

As I got to the juice/egg isle, a man wearing a tattered, paint-splattered T-shirt and an old, worn baseball cap made a comment about how great the cover was. He had two children with him, around 2 and 4 years old, and said his wife was at home with their newborn, and gosh that would be a great little contraption for them to get. That point in the conversation was when I would usually just agree and be on my way. But this particular time a little birdie told me to share a little more about why this contraption had been so great for us. So I explained that Caleb had muscular dystrophy, so it had really helped us out a lot in our day-to-day lives.

With this comment I half expected the man to run away, but instead he asked me more about Caleb's condition, what was going on with his muscles, etc. I probably didn't have all the right answers since this was before we actually got a diagnosis - Jeff and I had decided early on that the term "Muscular Dystrophy" was something the general public was familiar enough with that they would be able to at least wrap their brains around the fact that his condition was not something he would simply "outgrow".

After chatting for a few minutes, this man asked me if I believed in prayer. I responded, "Yes, I truly believe that all the prayers and positive energy have helped get him as far as he's come." He then told me he was a pastor at such-and-such church, and would I mind if he said a prayer for Caleb? "Of course not," was my response, expecting him to go home and include Caleb in his prayers. But to my surprise, he laid his hands on Caleb's head in the middle of the juice isle.

The words that came from this man's lips sounded as if he had known our family for years. He asked God to give my little boy strength, not only in his muscles, but to have the strength and wisdom to find his path and purpose in life. He talked about how he sensed great things from this little boy, and a deep ability to touch people's hearts. He said all the things a mother unsure of her son's future needed to hear within a few short minutes.

As I stood there with tears streaming down my face, surrounded by juice, eggs and yogurt, with a man in tattered clothing, and two young kids squawking in the background, I have never felt closer to God. It was such a beautiful moment in such an unlikely place... a moment that I will cherish for a lifetime.

A Fun Day in La Jolla

This morning Jeff, Caleb and I decided to go for a hike/walk at the Torrey Pines State Park in La Jolla. It was so beautiful to walk amongst pine trees, cacti, and have a gorgeous view of the ocean. After we were done, we decided to walk around downtown La Jolla. We found these amazing cow sculptures all over downtown, so we went on a "cow hunt."

Caleb and Daddy with one of the cows.

This one was titled "Emoo" :)

This was another one of our favorites. When we took Caleb off of the "tiger cow", he said very proudly, "I was a cowboy!"

Caleb also had tons of fun with this water fountain.

Caleb kept saying, "Mommy, you want to touch the ball? It's soooo wet!"

Wild Animal Park and Zoo trips

Every year for the holidays Jeff's parents generously give us a membership to the San Diego Zoo and Wild Animal Park, and boy do we use it! Spring is our favorite time to go, since it's not too hot and the animals tend to be more active (not necessarily what you may be thinking). Here are some pictures from a few of our trips. Enjoy!

In a Nutshell

Caleb's annual IEP (Individualized Education Plan) is tomorrow, which got me thinking about the past year. You see, I was asked to list all his major illnesses over the last year. Here it goes... Caleb had 5 colds, 3 of which needed antibiotics to kick, 2 of which turned into pneumonia, 1 of which needed a trip to the ER, as well as another recent ER visit for possible concussion. Throw in a death in the family and a major car accident for me and it was one DOOZY of a year!

BUT...

There were many wonderful things that happened this year, too. Caleb's Crew was bigger and better than ever, raising a whopping $17,000 for the MDA and continuing to raise awareness about UCMD. Caleb continues to amaze us all with his zest for life and his ability to defy the odds. He has met new milestones, some big, others huge. He has been involved in a wonderful program at his school, surrounded by so much love and support that continues to spread to basically every person that comes into contact with him. Every day he continues to remind us how lucky we are to be his parents and to remember to appreciate even the simplest of moments. He is such a beautiful soul that the good times completely outweigh the tough times.