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

Friday, June 25, 2010

Ava's 4 year check up

My baby girl had her four year old check up this week and she was so brave. I have an honesty policy when it comes to Dr. visits so when she asked if she would be getting shots I had to tell her yes. She was very distraught at the thought of this and cried and asked lots of questions. I gave her the play by play of what would happen during her visit, from weighing and measuring, to talking with the Dr., to the nurse coming in and giving shots at the end. She seemed to get her head around it and once it came time for the actual shots she watched them do it and didn't even make ONE peep! What a brave girl she is! We did bring the bubbles to calm her and distract her from the shots and that seemed to help a bit, but she managed to spill most of the bottle on the floor. Note to self-next time bring the smallest bottle of bubbles you can find.

So her vitals are: 40 3/4 inches tall (66%) and 32 lbs 12 oz (27%). The doctor said she is growing fine, she's just small and that she is finally on the BMI chart now! They also tested her hearing, which was great and her vision, which wasn't as great. Apparently she has 20/50 vision in both eyes! They suggested that we take her to see an optometrist so they can test her again.

She can't see so good...

but she can hear just fine!

Wednesday, June 23, 2010

Drive In

We have decided to have as much fun as possible this summer and we thought it would be really fun to take the kids to a drive in movie. There is a drive in theater in Sacramento, about 20 minutes from our house and they were showing Toy Story 3. We wanted to take the kids to see the movie anyway and thought it would be great to just get them in their jammies and watch it from the back of our van. They were excited to go see the movie and even more excited to eat the popcorn and candy that we brought with us! We went on a Tuesday which is their bargain day so we all got to see the movie for only $10.50! That's like one adult admission at the regular theater! Once we got there and got all set up with our chairs in the back of the van and the kids with their sleeping bags and pillows we just had to wait for it to get dark. The movie didn't start until about 9:05 and we weren't sure if the kids would make it through the whole movie. Ava didn't--somewhere in the middle she said "I'm tired. I want to go to sleep." So we told her to just close her eyes and sleep in the van and she did! Drew saw the whole thing, but I fell asleep for a few minutes! It was a very cute movie and we had a great time. Next time though, we'll go when it gets dark a little earlier.

Monday, June 21, 2010

Father's Day Camping

Last weekend we went camping with some good friends at the Kings River. My friend Jamie and her family have been camping at the same place for years~even before we were born~and the tradition continues now with their kids and grandkids (and their kids friends) all joining them. It is a lot of fun and we try to meet them there at least once each summer. This year the trip happened to fall on Father's Day weekend, so Dan was a great sport, even though camping is not his favorite. What a great Daddy he is! Willing to do something his family enjoys even on his special day. My dad also decided to make the drive up and meet us there to spend some time with his grandkids.

Our kids love camping! They love sleeping in the tent, playing all day, going to bed late and eating s'mores. This trip they even got to go on some boat rides and the campground had a large inflatable waterslide and playground for them to enjoy too. Jamie's mom always takes care of the main meals so we only have to bring our own snacks and drinks, and they have the RV right there in case there is the need for a late night bathroom trip. It's pretty much the perfect camping situation! Add in the fact that I get to spend time with my best friend and her family and it's a no brainer!

I want to thank Caren and Gary so much for always making us feel a part of their family and inviting us to go on their fun adventures!

Drew and Ashley on the beach

Ava building a sand castle

Ava and Grandpa Mark on the boat

Daddy and Drew on the boat

Mommy and Ava (with her mouth full of crackers)

Ava on the rope swing

Drew on the rope swing

Drew helping Gary drive the boat

Ava taking a much needed afternoon nap in the tent

Mommy, Ava and Baby Lexi

Me and Dan enjoying the weather

Ava and Grandpa

Ava in her pjs, playing in the morning

Friday, June 18, 2010

VBS-High Seas

The kids got to attend Vacation Bible School this past week. This year the theme was High Seas Expedition. They played games, made crafts, heard God's word and sang songs. They had a great time and especially enjoyed it because some of their best friends were in the same group as them. My favorite memory was picking Drew up one day and he ran up to me and said, "Mommy! Do you know what? Jesus is alive!" So cute! We are planning on sending the kids to at least one more Vacation Bible School this summer--they love it so much and I enjoy my 3 free hours each day while they are there.

Drew, Jacob, Ava, Keilani and their new friend Justin

Drew and Jacob

Drew and the Captain

Wednesday, June 16, 2010

Great Cardiology Check-up

Today Drew had his routine cardiology check-up with Dr. Parrish. We hadn't been for six months and usually I get nervous before these appointments, but not this time. Drew has just been doing so well and I'm feeling more confident that I would be able to recognize if there was something problematic going on. Dr. Parrish came in and talked with us and listened to Drew's heart. Then a med student he is working with came in and asked some questions and listened to Drew's distinct murmur. I always enjoy talking with the medical students (unless we are actually in the hospital, then I want to talk to an attending!). I feel like I usually know more than they do about Drew's heart and think it's a very good learning experience for them.

Drew had an echo and he did such a good job. He is a such a great patient! After the echo Dr. Parrish came back into the room and scared me a little bit. He started talking seriously and said "so, let's discuss what the echo showed us..." Um, that's a little bit scary. But then he said "Drew's heart function is outstanding." Woo Hoo! Just what I like to hear! He has a little bit of turbulence where the conduit meets the left PA but that has been there since the surgery and is not increasing, so it is no problem at all. I think he would have given us a whole year before we had to come back, but I was a little uneasy with that idea, so we are going back in 9 months (our longest break between appointments ever!) and I will call if I have any concerns.

Drew got an awesome prize for doing so well during the echo-A Star Wars play set! He loves it! The echo tech gave it to him and said she has special Star Wars prizes that used to belong to her husband. He said she could give them out to kids who love and appreciate Star Wars-and Drew definitely qualifies!

Sunday, June 13, 2010

Uncle Scott's Graduation

Uncle Scott is so smart!

On Friday we were able to celebrate with Dan's brother, Scott, as he graduated from the UC Davis College of Engineering with highest honors and a degree in Chemical Engineering. I don't know if you realize what an accomplishment that is. UCD has a distinguished engineering program and it's hard to even get into the program. Scott not only got in, he graduated with a GPA of 3.99 and was a member of the track and cross country teams. It makes me feel old to say this, but he is such a great kid! He is well rounded, has many interests and many friends and is such a sweet Uncle to our kids. They just love him! Anyway, enough gushing...

Scott also happened to be the student speaker for the ceremony so we had reserved seating right next to the stage. His speech was great! It really was. I might even post it here later--he was really funny! After the ceremony we walked over to Kemper Hall for the chemical engineering event. I was picturing some kind of explosion, but they were actually giving departmental awards. And Scott got two of them! I told you he was smart!

After that we enjoyed the traditional Himmelberger/Weiss celbratory Chinese food dinner. Scott talked about his short term and long term future plans. Short term: leave on a 10 day bike ride from Davis down to Orange County--a 650 mile ride! Long term: attend Stanford and work on his PhD in Materials Science Engineering. We are so proud of him and wish him the best of luck in all his endeavors

Uncle Scott is the very tall guy next to the lady in the red gown

All the 2010 College of Engineering Graduates

Some of Scott's Supporters-Dan, Aunt Jennifer, his mom and dad

Scott giving the student address

And on the big screen

Dandrea and Scott

One of Scott's awards from the Department of Chemical Engineering