Sunday, June 27, 2010

Camp Taylor Family Camp

The kids of Camp Taylor

We just got back from our first visit to Camp Taylor Family Camp. What an amazing experience! This camp is for heart kids and their families. They also hold a youth camp and a teen camp for older kids. We have been wanting to attend camp for years and it never worked out. One year was too close to surgery, another year we registered, but Drew got sick and some years the dates just didn't work for us. So we were very excited to be able to make it this year and we attended the camp held in Santa Clara. It was more of a family retreat than a camp since we got to stay in a hotel, enjoy catered meals and all the amenities. We also got to spend a day at Great America with other heart families. The camp pairs each family with a mentor, a teen or young adult survivor of CHD. Our mentor was 18-year-old Ryan and he was awesome!

I remember hearing Ryan's story at a fundraiser we attended in February. Ryan had a heart attack on the basketball court when he was 13. He was dead for four minutes before paramedics arrived and were able to get his heartbeat going again. (A brief aside~this illustrates the need for EVERY school to have an AED on campus, but sadly, most don't.) Ryan's defect was undiagnosed until his heart attack and the damage that it caused meant that he had to give up sports, and he is a sports fanatic. But, he is such an amazing kid that he doesn't have a bad attitude about that at all. Instead he spends his summers volunteering at all three camps for Camp Taylor and he is great with the kids! Our kids loved him and wanted to say hi to him, hug him, sit on his lap, or play with him every time they saw him. He sat with us at meal times and helped watch and entertain the kids while the adults got to play bunco one night (Dan and I were the big winners!).

Drew and his mentor, Ryan

We also got to meet another family that doesn't live too far from us. They have a 15-year-old and their two younger kids are the same age and gender as ours. Their six-year-old son is also their heart child so our boys and our girls enjoyed hanging out every chance they got. We stayed with them during our visit to Great America. Drew and Cole enjoyed going on the rides together and Andee and Ava loved the waterpark.

I always get teary at things like this and this weekend was no exception. The first night we went around the room and introduced ourselves and our families. And while I know the room was filled with some of the strongest and bravest parents and kids there are, I couldn't help but be heartbroken at all that these kids have been through. I heard multiple stories just in that one room of kids who had been through three open heart surgeries, only to have their hearts fail and be transplanted. Which is a miracle in and of itself, but that is a lot of heartache for a family to go through. The last day we had a question and answer session with Dr. Desai, an amazing and generous cardiologist at LPCH. He mentioned that many of the medications that our kids are on have not been tested in children. They have done studies on adults and they are safe for adults and are most likely safe for kids, but it is not known for sure. And that just made me sad again. I gave my newborn baby some of those medications and didn't even ask if studies had been done. I guess I probably would have done it anyway, what choice do we really have? The same goes for the information on heart kids and ADHD. They think it is linked to time spent on bypass and time spent in the NICU, during the critical period of time when their little brains are developing. But when they need the heart surgery to live, it doesn't really matter if that treatment may increase their chances of developing ADHD.

I don't want to end on a sad note, the talk with Dr. Desai was very informative and interesting. And he even gave everyone a personalized diagram of their child's heart, that's something we didn't have yet! After that discussion we ended the weekend together with everyone sharing what Camp Taylor meant to them. For us it was a lot of fun making great memories, meeting other families and celebrating our heart hero!

Some of the mentors

Drew and Daddy playing a game

Our family at dinner the first night

The kids doing some crafts

Himmelbergers ready for a fun day at Great America

Mom and Ava driving the car

Drew and Cole riding the roller coaster together

Ava wanted to ride all by herself!

Ava wasn't tall enough for a lot of rides, but she liked the carousel

Drew and Cole

Heart buddies

Cole shared his CT towel with Drew

Meeting up with Ryan at lunch

Posing with Snoopy (Ava said no thank you)

The kids enjoying the wave pool with Daddy

Last ride of the day

Drew and Nick, our friend from Hearts of Hope

I love this picture!

Exhausted after a long day of fun!

Drew and his shadow buddy-all the heart kids got one and the buddy has a scar on his chest too


Linda said...

I just got caught up on your latest posts... good to know all the wonderful things your family is enjoying this summer. Yea!

Gina and the Gang said...

I love every single one of those pictures!

Laura said...

ummm...the picture of them sleeping is ADORABLE!

lindsey said...

This sounds like a wonderful camp!! I have commented before I think...our daughter had alot of the same defects/issues as Drew (IAA, VSD...), and she is doing awesome as well! I feel so close to you guys, and I don't even know you. Your story has been a constant encouragement to me...thank you for that! So glad Drew had an awesome cardiology appointment! Both he and Ava are simply adorable!

Lindsay said...

I keep saying that we should go but we never I think we'll have to after seeing all of the great pictures and hearing your stories. Is Cole's mom's name Trixie? I'm thinking based on what you said about their family that it must be. She is such a kind person. I met her right after Marin had to have her first surgery unexpectedly and she was such a good person to talk to. It was nice to see such a cute picture of her son.