Merry Christmas!

I hope everyone had a very Merry Christmas!

With all the craziness of Christmas morning, I wasn't able to get a picture of the girls together, actually I really didn't get any decent pictures (I think it is time for a new camera!)..these two are the best I got. Again, I hope everyone had a great Christmas holiday surrounded by family, friends and love!

All I Want for Christmas...

...is my two front teeth!

Carlie's first day of dance class

Yesterday was a day that Carlie had been waiting a VERY LONG time for. I told her that when Sissy's soccer season was over, she could start taking dance lessons. She was beyond thrilled when the day finally arrived and couldn't wait until her sister would be watching her for a change. I wasn't sure what to expect, Carlie hardly ever sits still and isn't he greatest listener, but she was very attentive in class and did everything that her teacher asked of her. She LOVED every minute and has been asking me all morning if she gets to go back to dance this afternoon.

I wanted to take some pictures of her before we left the house (as I did with Caiteyn when she first started) and she insisted on posing in every single picture...she is a HAM!

Just for fun, I wanted to put a side by side picture of the girls on their first day of dance (Caiteyn is 3 years 5 months and Carlie is 3 years 8 months)...first of all I can't believe how little Caiteyn looks! I've also always said that Caiteyn has much longer legs than Carlie and it is pretty obvious in these pictures. And, I can't believe that they are posing almost the exact same way...too precious!

End of Soccer

This past weekend was Caiteyn's last soccer game. She had a great time playing, almost too much fun and forgot that she was actually playing a game some of the time, and they ended the season with a record of 8-0-2 (I know, her first time to ever play an organized sport and they didn't lose once, pretty deceiving. I hope she doesn't think that she will win EVERY single time!). Going into the season, I knew absolutely nothing about soccer (I still don't know a whole bunch!) but I do know that I enjoyed every minute of it, cheering our girls on and getting into the game. I'm not sure if Caiteyn will return to play next year, she really isn't aggressive enough and is sometimes afraid of the ball when it comes her way, but I'm so glad that we had the experience of AYSO this year. We had GREAT coaches and I know that made the season much more enjoyable...

Last halftime pep talk.

Receiving her trophy (that lights up too! How come we didn't have cool trophies like that when I was young?).

The Turquoise Tornadoes

Caiteyn and her AWESOME coaches, Coach Ray and Coach Brett.

Awards

Caiteyn has had a GREAT month at school! We received her report card and she had all Os (equivalent to As) and a G+ (same as a B+) which put her on the honor roll. A trimester awards ceremony was held and she received three awards. The look on her face when her name was called was priceless! She was very proud of herself, we were VERY proud of her as well, and she let everyone know it!

The following week she received a Student of the Month Award...again, her face was memorable. I am so proud of how well she has done in school and I hope that her love for school only continues to grow!

Her first of three awards.

Caiteyn's second award. Look at that smile!

The look I got as she walked up to receive her Student of the Month Award.

So proud and happy!

Founder's Day Parade

Caiteyn's dance studio was part of Rancho Cucamonga's Founder's Day Parade and the girls had so much fun dancing around in the streets. It was a beautiful day (we had been having some very warm weather) to sit back, relax and enjoy the parade.

Holly, Arianna, Shannon and Caiteyn before the parade started.

Dancing in the streets.

Studio Elite Dance Team

Arianna, Shannon, Cori, Caiteyn and Nia after the parade.

Halloween Fun

Halloween time was very busy for us. The girls went to several parties and enjoyed being able to wear their costumes more than once...

We were invited over to a friend's house for a cookie and cupcake decorating party and the girls loved all the frosting and sprinkles.

The kids decorating bags to take all their goodies home in.

There was also a TON of food and our hostess was so clever to make it all Halloween themed.

Eyeball eggs

Mini mummy pizzas (before)

Mini mummy pizzas (after)

Bread bones

Bug punch

Of course, Caiteyn and Carlie's favorite part was eating their decorated cookies and cupcakes. I think there was more frosting and sprinkles than there was cookie and cupcake...made my stomach ache just looking at their creations.

Halloween Night 2009

25 Years Ago...

Today marks a very special day…25 years ago, Baby Fae, born with Hypoplastic Left Heart Syndrome, received a heart transplant. Back then, there were little to no options for a child born with HLHS as the Norwood had only been performed on a few babies without much success. Baby Fae’s transplant, done by Dr. Leonard Bailey (Carlie’s surgeon), has paved the way for MANY of our heart children. The 3 staged surgeries that are performed today to “repair” the heart were very new and still considered experimental. A successful heart transplant had never been performed on a newborn and parents with these special children were often told to take their babies home to die. Boston and Philadelphia were offering the Norwood procedure, followed by the Fontan (the Glenn or Hemi-Fontan was not being done at the time) but the statistics were not very promising. In a published study of 130 babies, 55 survived the Norwood and only four went on to have the Fontan, in which 2 survived! As a heart parent, I am thankful for how far research and technology have come and even more thankful to those parents and children who were the pioneers; many of our heat babies would not be here today if it weren’t for you!

Here is an article about Dr. Bailey and Baby Fae that was published in a local newspaper this morning…


Twenty-five years ago today, the eyes of the world were on a baby girl who needed a heart. Some were critical, many supportive. And although Stephanie Fae Beauclair died 21 days after receiving a baboon heart, more than 500 young patients since have received heart transplants at Loma Linda University Medical Center. "The bottom line is Baby Fae's legacy is a strong one - there have been several thousand babies salvaged now who would not (have made it) otherwise," said Dr. Leonard Bailey, who headed the transplant team 25 years ago. "I think she sent word around the world that people should think about newborns, too."

Bailey and his colleagues began experimenting with heart transplantation in animals in the late 1970s. "We got a lot of baseline data on how newborns do even without medications. They do better than my age," said Bailey, surgeon-in-chief at Loma Linda University Children's Hospital. He and other researchers knew they would deal with a "naive" immune system that would reject an organ at a different pace. Then, Swiss researchers sent them an experimental anti-rejection drug called cyclosporin. They did more research on animals and found those with heart transplants could grow and have babies. "Then we knew we were onto something - and how to translate that into real life for human beings?" Bailey said Thursday before an afternoon surgery. "No one was (talking) about doing heart transplants, let alone in infants." They looked at primates, then narrowed it down to baboons because 80 percent of their DNA is the same as human DNA. Further lab tests revealed low reactivity between baboons and humans. "In Baby Fae's case her reactivity was even lower than her father's was to her," said Bailey, who lives in Redlands. "She responded quite weakly to the donor and that's how we selected the donor for her transplant."

On the morning of October 26, 1984, Bailey transplanted a baboon heart into "Baby Fae," born 12 days earlier in the Barstow area with a fatal condition called Hypoplastic Left Heart Syndrome. "The technical features of it all went well," Bailey said. "She was waking up, a couple days later she was off the ventilator, eating," he said. He and his colleagues had learned to administer cyclosporin to humans so Baby Fae would not reject her new heart. As she recovered, news spread around the world, bringing the media and protestors to the medical center. "The media scrutinized Dr. Bailey and everything he did," said Marie Hodgkins, a nurse who managed the cardiothoracic unit Baby Fae was on. The nursing staff was not prepared for the onslaught of attention, and the subsequent security measures. But Hodgkins' team focused on taking care of Baby Fae, and Hodgkins talked with Baby Fae's mother, Teresa. The outside environment was not so peaceful. Staff had to wade through picketers and the press, and had to show credentials to get into the unit, Hodgkins said. "I was trying to keep the unit as calm and basically as normal as possible," said Hodgkins. Hodgkins watched Bailey being grilled at press conferences. His home was also picketed and police kept watch on his family. "I'd look at him and see how tired he was - he was either up in the unit or sleeping in a bed (up there) so he could be there at the drop of a hat if need be," Hodgkins said. "I would sit there and listen to what he had to do to justify what he did," she said. "It was hard because I wanted to stand up and say, `Leave him alone - he needs his energy to take care of this baby.' "

Bailey's concern was, after a few days of doing well, the baby's kidneys began to fail, then other organs, and her condition worsened. "The last thing that gave up, on her last day of life, was her heart," Bailey said. "It was very disheartening to me and the rest of the team - it was not like any experience we had in the lab," Bailey said. "I don't know to this day what went wrong - but it's hard to attribute to rejection." A memorial service was held for little Stephanie Fae Beauclair at the Loma Linda University Church. "It was huge - it really helped to bring some closure to our organization," Hodgkins said. "She was an adorable baby we bonded with." Hodgkins finally had a chance to get to know Teresa Beauclair last year. "I said `Teresa, you are very aware, I hope, of what you started,' " she said. Beauclair, who chose anonymity at the time of the surgery, visited the unit where her baby stayed and will speak publicly for the first time on October 31. "She said, `I never thought of that,' and I could see her begin to realize," Hodgkins said. Beauclair asked Bailey to continue his research, and he did, although he and his team would never do another "cross-species" heart transplant, partly because of new FDA regulations. "I do regret not replicating the Baby Fae operation - we could have done it better on the next one," Bailey said.

In November 1985, Bailey and his team transplanted a human heart into "Baby Moses," who was from the Bay Area. "In those days those babies were set aside to die, and he was well along the way to dying when I discovered him," Bailey said. Baby Moses lives in Las Vegas and turns 24 in November. "He still has the same little heart ticking away," Bailey said. As Loma Linda University became known for pediatric heart transplants, staff did not have to go as far for donor hearts. The medical center does 15 to 20 a year, Bailey said. "It did get Loma Linda's name out there but I know that's in no way why it was done," Hodgkins said. "It was done to help babies."

Bailey has also met some of his patients, many of whom have grown up, completed high school, married and had children. "For these little newborns it means a lifetime and I hope it's long. The system is not perfect - some just have a miserable time," he said. "For those that stay with the program and take their medication, there are many examples of them being (active) citizens." Organ transplant has become more sophisticated in the last 25 years, and Bailey said advanced immune system medicine is around the corner. "We're doing better than ever in history and are limited largely by a clear understanding of immunology," he said. A new advance would involve intrinsic acceptance, he said. No matter what the improvements, he said the medical center's transplant work still relies on organ donation. "It's tragic another baby or child has died, but the help to families who participate in donation develops closure to the loss they've had," he said. Transplants are only 5 percent of what the medical center does, but Baby Fae gave that work a face. "Any critic of what was done needs to look at the program," Hodgkins said.

Events will be held throughout the year to mark the 25th anniversary, including Beauclair's first public appearance on October 31 as part of the centennial celebration of the Loma Linda University School of Medicine. The Children's Hospital Foundation's annual gala, "Got Heart," will feature some of the heart transplant patients on February 27, 2010. "Stephanie's Heart," a 30-minute documentary about Stephanie Fae and Teresa Beauclair, will premiere at 4 PM Saturday, October 31, at Loma Linda University Seventh-day Adventist Church. It will air on PBS - KVCR Channel 24 - November 2 and 8, Monday at 7:30 PM and Sunday at 4:30 PM (You can see a trailer for the movie here...)

Single Ladies

So a little background...one of the dances performed at Caiteyn's dance studio is to Beyonce's "Single Ladies" and the girls have become so OBSESSED with singing and dancing along with the song that they are always asking me to put it on for them. The other night as the girls were dancing to the song for the twentieth time, I decided to pull out my camera. Every time I watch them do the “Single Ladies” dance, I laugh until I have tears (in a good way of course) and had to share with all of you...enjoy!

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Dirty faces

They couldn't resist the cupcakes with the black frosting...

First soccer game

Caiteyn had a GREAT first game! She played really well and even scored a goal! I was so proud of her and I think it gave her so much confidence. A couple of the other girls were teasing her earlier in the week about how she wasn't that good of player and I know that she felt great after that goal! Her first game, first goal and first win! Way to go Turquoise Tornadoes!

Listening to Coach Ray and halftime.

Caiteyn and her good friend Jacob after both of their games.

First day of Preschool

Today was the day that Carlie has been waiting for...her first day of preschool! Ever since Caiteyn started kindergarten, she has been wanting to go to school herself. When we got the call last week that she would be put in the class, she asked everyday, "My going to school today?" and I had to keep telling her, "no, on Monday". Well she woke up this morning all excited when I told her today was her first day of school. As I was getting her dressed she asked me if I was going to stay with her. I had to explain to her that she would be on her own and that she wouldn't be at Sissy's school (she had it in her head that she woulds be going to the same school as Caiteyn). We waited outside the class until they were ready for us and she walked right in and started playing with the art supplies. I thought that she might be a little shy and emotional, but she asked the teacher for glue so that she could make art...we kissed her good-bye and then she waved to us as we walked out the door. She is growing up so fast and I can't believe how far she has come! She truly is a miracle!

Such a big girl!

Caiteyn told Carlie that when she got home from school, she wanted to hear how her first day went and who her teacher is...

Daddy and Carlie having a talk before class started.

The many faces of Carlie...

Carlie recently discovered that when I take a picture of her, she can see the results immediately, which lead to this photo session...

Firsts...

First day of 1st Grade...


First soccer practice...

Overdue post!

WOW, I can't believe it has been so long since my last post. We had such a short summer this year that we were trying to fit in as much as possible and well, I guess I got lazy on the whole posting thing. We didn't do any traveling this summer, but we spent many hours by the pool, hanging out with friends, taking the boat out on the river and of course, visiting the "Happiest Place on Earth". Here are just a few pictures from the summer...

Over the summer, Caiteyn decided that she wanted to play soccer this fall and so we signed her up for AYSO, the only problem, she also wanted to try out for the dance team at her studio. After talking and thinking it over, we decided that she would do both. Soccer is from August to November (games don't start until the middle of September) and dance is a year long commitment. So far things have gone really smooth; we make sure homework is done when she gets home from school and then on Tuesday and Thursday we have soccer and Wednesday and Friday we have dance. She seems to handling the schedule well and I really wanted to give her the opportunity to find what it is that she loves.

This summer also brought some bad news for our family. My dad was diagnosed with Adenocarcinoma of the Esophagus in July and after being told that it was an aggressive, fast moving cancer, nothing was done for WEEKS! This past week he finally had an endoscopic ultrasound and liver biopsy done and we were so happy to hear that the cancer is contained within his esophagus. This means that surgery CAN be done along with radiation and chemo. Please keep my dad in your prayers as surgery has a long recovery and of course, chemo and radiation are never easy on a person.

Blue Suede Shoes

Caiteyn was recently in a dance recital and her class danced to the song "Blue Suede Shoes". Ever since hearing the song, Carlie has been singing along...

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