Trip to Northern California

A couple of weeks ago we took a trip up to No. Cal. The main purpose of the trip was to see my brother, Scott, while he was on leave before going on his next deployment (he's in the Marines - HOO-RAH). Unfortunately, I was pretty bad about taking pictures until the last couple of days, so there were quite a few festivities that didn't get documented. I think there's still enough pictures for you to get the idea.

Caleb posing with Uncle Scott and Auntie Remy

Lunch with Grandpa Steve. Unfortunately Caleb was in a bit of a foul mood at this point and didn't want his picture taken.

Still a bit photo-phobic while reading with Emma (whose house we stayed at while we were there, along with her parents Christina and Ben, whom I failed to get a picture of).

Playing in the bumper boats at Christina's parents house...I don't think we can go to the pool without one of these ever again. He absolutely loved it (see video below).

Don't shoot!

This was a really good trip for getting Caleb acclimated to dogs. We started out pretty small with Hershey, whom he loved to chase around the deck.

Then we took a sidetrip to San Jose to visit a couple of people, both of which had some smaller dogs. By the end of the below visit, Caleb was saying, "I want the doggie to kiss me!" This is HUGE, since he has NEVER liked dogs to get near him.

Posing with my buddy Angie. She's a dear friend from Undergraduate school at San Jose State. This was the first time she got to meet Caleb. She's, of course, heard and read all about him over the years, though.

We also met a new friend, Robyn, who also has Ullrich CMD. Her parents recently renovated their home to make much of it accessible for Robyn. I left with many great ideas, and Caleb had a blast playing with her.

Here they are playing in her accessible play house.

Here's the video of Caleb playing in the bumper boats.

It was a great trip visiting with family and friends, but we did leave with somewhat of a heavy heart. It was difficult to say "See ya later" to my baby brother this time (sorry, dude. I know you could probably kill me with your bare hands and stuff, but you'll always be my baby brother). It was also hard for Jeff and I to realize that it is just becoming more and more difficult to travel with Caleb. He requires so much equipment and modifications of his environment that it's just getting more and more challenging to be away from home. We did have lots of fun, though.

Touching Story

A couple of days ago I got a message from one of our neighbors, Kelle, that said her oldest daughter, Kylie, had a little something for Caleb. I thought she must've misspoken because it is their youngest, Maleia, that is in LOOOOOVE with Caleb. Whenever Maleia sees Caleb walking in the neighborhood, she practically starts shaking with excitement and wants desperately to say hi to him and give him a hug.

When I called Kelle back, she restated that Kylie had something for Caleb and could she just send her up to give it to him. When they arrived I saw that Kylie was holding a little baggie with some money in it. She explained that she had had a lemonade stand the week before and wanted to donate half of the money to kids with Muscular Dystrophy. She went on to explain that she would be having a few more lemonade stands this summer and would split up the money the same way.

Kelle told me that Kylie came up with this idea on her own! What an amazing heart this little girl has. We are continually humbled at Caleb's ability to touch so many people's lives, and the amount of support we receive on a daily basis.

Yep, He's Actually Reading!

Below is a video of Caleb's latest feat: Reading! This is pretty awesome for a kid who's not even 4 yet. This is a story that he's obviously practiced a few times. It may not have the greatest plot, but it gets the point across. Enjoy!

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

Thank You, Maria!!!

Most of you have at least heard of Maria. She has been such a blessing to our family and our home since Caleb was 4 months old. She has not only cared for Caleb while I needed to work, but she has loved Caleb! She helped us keep our sanity while I finished graduate school by being someone we could trust with Caleb whole-heartedly, not to mention keeping our house clean! Maria has always accomodated our whacky hours, multiple changes in schedules, different appointments, and has always done so with a huge smile. Unfortunately, with Caleb's hours for school increasing next year, we could no longer offer enough hours. Although she will not be coming to our home to care for Caleb on a daily basis anymore, Maria is still a part of our family and will continue to be part of our lives.

We love you, Maria, and thank you from the bottom of our hearts for taking such good care of all of us for the last few years! We can only hope that the next family you are helping appreciates what an angel you truly are.

Last Day of School

We just got a new camera because our other one broke. But I realized there were still a bunch of pictures on the old one that I never posted about, so ya'll get to read a bunch of posts that are pretty out-dated (but still fun).

A few weeks ago was Caleb's last day of school. All the kids sang a couple of songs for the moms and dads, then we all ate snacks together.

All the kids getting ready to sing.

Holding hands with some friends.

This moment brought tears to my eyes:

Here is Caleb helping another little boy with the hand motions to "Wheels on the Bus." He kept hollering, "Miss Kristin, I'm helping!" This is such a great example of why this program is so important for Caleb - he gets the opportunity to be surrounded by such diverse needs and gets to be the one to do the helping rather than always being the one who needs help.

Thank you for a fantastic year, Miss Kristin! We are really looking forward to another great year with you (Caleb's already asking when he gets to go back to school).

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.