Here is Taylor with her new haircut. Pretty cute!!!
Erin and Jade are so extremely close, but over these past few weeks they have grown even closer. They are constantly playing with each other and giggling more than ever. They even insist on sleeping with each other most nights. Last week they came up with a new game they call "Horsey". Jade is the horsey, and Erin rides on her back (on the bed, of course). I have never heard them laugh so hard, for so long, EVER! It was the cutest thing! And as most of you know, they also like to sing together ALL THE TIME. One of their favorite movies (this month) is "Barbie and the Diamond Castle", and one of the songs in the movie is called "Connected". They sing that song together all the time, each one taking parts, while Taylor dances along. They really don't understand the significance of the song, but it is definitely not lost on Kevin and me. I'm hoping to get some video footage of the song, but for now, here are a few pictures of the "Horsey" game.
While I'm patiently awaiting the photos of our visit with the service dogs, I thought I would catch up on some older pictures that I never had the opportunity to post. These are from a reception we went to in October for a couple who issued a challenge on behalf of Children's National Medical Center. In an effort to raise a large amount of money for the hospital, the Goldbergs donated $25 million and challenged the board to match it. Unbelievably, they did!!! We were invited to take part in a reception to honor the Goldbergs and thank them for their amazingly generous donation. It was a privilege to be a part of such a special evening! The girls were asked to draw a picture depicting their dreams for the future.
Pics 1 & 2: Erin and daddy taking a moment to cheese for the camera. She was busy watching the pianist; she was absolutely fascinated. Pic 3: Mommy and our beautiful girls! Pic 4: Each of the girls got up on stage and spoke into the microphone to describe their dreams for the future. Taylor would like to be the fastest runner someday. Pic 5: Jade said that she dreams of being a princess. As you can guess, everybody thought that was pretty cute! Pic 6: Erin spoke about her dreams of walking one day. The room was very quiet, and there were more than a few tears. Many people came up to her afterward to assure her that she WILL walk someday. Pic 7: Here are our beautiful girls with their pictures. They were very proud! And we were shocked at how well they did standing up on stage and speaking into the microphone. Pic 8: This picture was taken with the Goldbergs and the two other girls who were asked to participate in the event. What a special evening! Pic 9: Taylor is sitting with Dr. Holbrook, who is the Chief Medical Officer of Children's National Medical Center. The first time we met him, Erin and Jade were still conjoined, and we were at the hospital for a meeting with Ms. Jackie. Taylor was sitting on the floor blowing bubbles, and he got down on the floor with her in his suit and tie to blow bubbles with her. It's not often you see an executive sit on the floor with a two year old child to blow bubbles. He is a fantastic man, and he did not hesitate to get down on the floor with Taylor again for a hug and to take this picture. I think I have a picture of the first time as well. I'll have to look for it.
Born as a conjoined twin and separated on June 19, 2004. Erin suffered spinal cord ischemia (stroke to her cord) sometime during the surgery, leaving her paralyzed from mid-chest down. It is a blessing that she survived the surgery and the stroke, and she is truly a gift from God.
Jade is Erin's identical twin sister. While she outwardly seemed to have the most complications during the separation surgery, she deals with very few long term affects of being conjoined. You will likely find Jade running to get somewhere, and she keeps us laughing with the things she says. Jade is another gift from God!
Taylor is our sweet girl who truly is a Joy. When she was 3 years old, we found out that she had a tumor at the base of her spinal cord. It was exactly one year after her sisters' separation surgery. This spinal cord lipoma, while benign, was wrapped around her spinal cord, completely enmeshed with her nerve roots. The tumor was tethering her spinal cord, and Taylor was losing function in her bladder, bowel and right leg. During the first surgery, they were able to remove approximately 60% of the tumor. Her cord became retethered almost immediately because of scar tissue, and Taylor had her second surgery in September of 2007. We are fairly certain her cord is retethered again, but because the risk with each surgery on her spinal cord increases exponentially, Taylor's neurosurgeon wants to postpone another one as long as possible. We now weigh the risk of losing more function from her tethered cord with the risk of losing function from the surgery. There is a fine line. Despite all of this, Taylor maintains her positive attitude and has a very sunny disposition. We could not be more blessed!
Jade Hope and Erin Faith Buckles were born on Thursday, February 26, 2004. They are true miracles who have beaten the odds. Conjoined from mid-chest to naval, the girls shared a pericardium (sac around the heart), diaphragm and liver. Their hearts shared a small electrical connection and beat in synch. Erin's heart was 60% in Jade's chest. These beautiful babies were born to Marine Gunnery Sergeant (now Master Sergeant) Kevin Buckles and his wife Melissa. They were also welcomed into this world by their brother, Kevin Jr., and sister, Taylor Joy.
Erin and Jade were successfully separated on Saturday, June 19, 2004. They returned home on Friday, July 2, 2004, just 13 days after surgery. We later learned that Erin suffered a stroke to her spinal cord that left her paralyzed from mid-chest down. The damage occurred at the T3-T7 levels of her spinal cord. The injury is considered incomplete, so we have great hope for at least some recovery.
Taylor Joy was diagnosed with a tumor on her spinal cord in June of 2005, and she has undergone 2 surgeries since then to try to preserve her ability to walk.