Madeline and I got back from Cardiac Kids Camp last night!
This is an amazing camp for kids with heart defects all organized by incredible people at Le Bonheur. It's totally free for all campers - they do fundraising all year long - and there are 67 campers this year. Kids can go to camp when they are 8, and when they are adults, they can be counselors. It was so touching to see the "Adult Congenitals" as they are called. These are "kids" in their 20's who were born with heart defects. They were campers and now they are counselors - friends for years because of camp!
Since Madeline is not 8 yet, and really not ready AT ALL to stay at camp all week without mom, our Le Bonheur friends let the two of us come for a couple days to see what it is like and prepare her for next year when mom will not be coming. :( I felt so privileged to get a peak inside camp and see what they do. I know all parents would like to have that inside perspective.
Our first night! Madeline made up her bed and was so excited to sleep in the room with 9 other girls. Her "cabin" had 8-12 year olds. They are such fun kids with super personalities. They had come from all over, but mostly from Tennessee. There is even one girl from Maryland. Her mom researched all the cardiac camps and decided ours was the best!!!!! (I'm not surprised!)
She had a fun first night, although, as it goes with camp, the girls were SUPER excited! They were up VERY late and there was a little jumping off bunks and screaming going on. This is just part of what Madeline has to learn about at camp (and life). She is such a rule follower, that it was a little tough for her to watch some of the girls continue to stay up after many adults had come in to ask them to quiet down. One of the other campers was ready for bed, too, and told Madeline "It's always like this on the first night!" Everyone did finally fall asleep and the next night, they got to sleep a little earlier and I'm sure last night was even better!
The next morning they got to ride a pontoon boat!
Then on to swimming in an amazing pool with a slide and lazy river! They swim every day at 10:15.... definitely one of Madeline's favorite parts of camp!
She's on a little kick with the swim cap. She's been swimming so much that her hair is starting to turn green! So, she thinks it's pretty fun to wear the cap. Sometimes she wears it, sometimes not. Either way, she's pretty cute, I must say!!!!
In the pool with a new friend, Madison.
There is always a cardiologist at the camp 24/7. They are there not only in case a camper needs something, but also to provide for the education component of camp. Here, Dr. Goldberg, one of the surgeons at Le Bonheur is describing how a typical heart works. Then, he drew all the types of defects that were represented at camp and what the surgeons do to fix them. He brought some kids up to help! I do have to add that he is an "Adult Congenital." He had transposition of the great arteries where the aorta and pulmonary artery do not twist when they are formed so the pipes are not on the correct sides. The blood goes in two separate circles. Heart to lungs back to heart, to lungs, back to heart. The second circle is to the body, back to the heart, to the body, back to the heart. So, the red blood is not ever going to the body and the blue blood is not ever going to the lungs. He is such a wonderful asset to these kids. He understands their struggles first hand!
This was so informative and really just amazing. I thought about what I said when I started this blog, we are all miracles. It's a miracle doctors have the gifts and talents to mend these tiny little hearts, and that these mended hearts function well, and it's a miracle that anyone's heart works as it should. Dr. Goldberg inspired the kids saying that they are only limited by their imaginations (he actually said that to us when we were talking to him about rides at Disney a couple years ago!) He also said that when he was a kid, they celebrated his surgery date like a birthday or anniversary. One year his sister gave him a card that said, "Thank you for living!" From then on, they called it "Thank You for Living Day!"
I just love that!!!!
On to tie dyeing!!!! This was Madeline's other favorite part!
Dr. Ballweg is helping Madeline. She is one of the doctors who works in the CVICU and follows the kids with the very severe defects. She is not our cardiologist, but we all really love her!
Loving her shirt!
After dinner we did several projects. The kids were divided into 3 groups and rotated 3 projects. This is Dana from Child Life. The kids are putting sand into a glass jar inscribed with the word "HOPE." As they pour their sand, they share a fear, a hope, something they are thankful for, something they learned at camp, etc.
After all the kids finished their projects, all the adults took a turn sharing and pouring sand. This was pretty emotional. Very good for all the kids to see and hear that not only do many of them share a defect, they often share the same fears and accomplishments, hopes and dreams. Here is Alicia sharing. The staff and counselors are really so committed and dedicated to these kids. They love them all so much. I feel so blessed that our baby is under their care.
One of the other projects was rolling out a clay ball, cutting it into a heart and putting their thumbprints in them. These will then be baked and painted. An artist is going to take all the hearts and make a piece of artwork for the CVICU. The new Le Bonheur hospital is full of WONDERFUL artwork. You can actually have a tour just to look at the different art. There is a piece from last year's camp in the CVICU family room; this one will be close to it.
That night, Madeline slept in my room. After only about 6 hours of sleep the night before, super hard swimming and a quick nap around lunch, she was just exhausted and needed a solid night's sleep. This was Crystal and Alicia's idea, although I must say, I was kind of wishing for it. I didn't want to be one of those moms coddling her kid at camp, so I was willing to let her try to sleep with the girls again. But, Crystal and Alicia really wanted her to be rested and ready for the next day. Again, this is another example of how the staff really get the kids; they remain flexible for their individual needs and just do what needs to be done. The next morning she felt great and was raring to go!!!
Madeline chose to arts and crafts (big surprise - ha!) and I went to the Nature Hut! I got to hold a snake for the first time ever! The kids were all putting the snake around their necks and trying to get me to do it, too. "Baby steps," I said, "I'm fine just holding it out here!"
On to swimming again! Here is Madeline enjoying the slide. She went down this no less than 30 times and swam to the side. She swims hard!
Here is our cardiologist's AWESOME nurse, Jessica. She is amazing! She is also an "Adult Congenital." She has hypoplastic left heart syndrome which means she was born with only half of her heart. She is one of the oldest survivors and had her first 4 surgeries at CHOP - Children's Hospital of Philadelphia. She actually had them done by Dr. Norwood - the physician who developed the "Norwood" surgery that kids with this defect have done as the first of a series of 3 surgeries. Jessica also had surgery 2 years ago at Le Bonheur to replace her aortic valve. It's hard for me to limit my description of her to one adjective, so I just have to list: inspiring, motivating, loving, dedicated, caring, empathetic, genuine, amazing, incredible, tender. We are so lucky to have her at Le Bonheur.
After swimming, we had another education session about healthy eating to take care of our bodies.
The kids worked in groups to come up with some healthy snack menus. Madeline got a lot out of this! This morning she made a "carrot island" snack with a bagel, some cream cheese and a carrot sticking out of the middle!
Then, we went home! As you can see, it was a jam-packed day and a half! So fun, and she says she really wants to go next year without Mommy!
We all missed Eli, Susanna and Daddy for sure! Eli and Sus spent one day with Miss Alyson and one day with the Mangusos while Tim was at work! We all had fun but were VERY happy to be back together last night!!!
