Locks of Love - Part 3

Caiteyn did it again...she donated another 10 inches to Locks of Love. She's been wanting to cut her hair short, and boy did she go short! While it looks very cute on her, I'm already missing her long hair. I figure this will give her an opportunity to learn how to "take care' of her hair now that it is short, it was just so long that she wasn't able to wash it all by herself.

The first time she cut her hair was in October 2007, the second time in June 2009 and now. I can't believe that we've cut over 30 inches in just three years!! Her hair grows REALLY fast! I am so proud oh her!

First Day of School 2010

The school year came around so much faster than I was ready for, just as it was finally starting to get warm, school was ready to begin! I guess that means we'll have to try and squeeze in pool time after school. :)

This year Caiteyn will be in second grade...it is so hard to fathom that she is in second grade! It's true that as soon as they start school, they grow up so much faster :( Second grade was such a special year for me when I was in school. It was the year that I met my best friend (whom I am still best friends with today) and it's the year that I have such fond memories of including a great teacher, Mrs. Kranawether. I hope that Caiteyn is able to create memories that will last her a lifetime as well...

She is so excited to go back to school and start the new year, which I love that she loves school so much, it makes life so much easier. I hope you have a great year in second grade Caiteyn, I love you so much!

First day of second grade.

Carlie wasn't able to start school the first week like her sister...with her only going to preschool two days a week, her first day of school was on the day of her cardiology appointment (which had I canceled it, it would have been another month or so before I could get her in again) and the day after her appointment, she started not feeling well. I took her to the pediatrician after she started running a fever and red bumps showed up all over her chest, she had Roseola. After a weekend of recovery, Carlie was able to start the second week!

After our preschool experience last year, I was a little worried about how the year would start off, but I am happy to report that Carlie enjoyed every minute! She adores her teacher and looks forward to her next day of school. I hope you enjoy your time in preschool Carlie, you are such a joy and I know your teachers will love you as much as I do!

First day of C.L.O.U.D.S Preschool

Cardiology Check-up

Carlie had her cardiology check-up today, her last one was in June 2009, and everything looked GREAT! Her echo showed that her heart is functioning very well! Her mitral valve continues to have a mild leak (which is great, at one point in our journey it was severe), which I assume she will always have because of the amount of work that valve does, and her oxygen saturations were registering 94/95%!! She is still on a dose of Enalapril, which I was hoping to drop this visit, but hopefully by our next one she will be able to come off of it (her cardiologist did say a while back that it is her goal to get her patients off of medications by the time they start school). Needless to say, I was very happy!! I still get nervous every time she has a check-up because you just never know; things can change so quickly! We continued to be blessed with her good health and we don't have to return for another check-up until next summer, before she starts Kindergarten!!!

Summer 2010

Summer started early for us this year, Caiteyn's last day of school was May 21st (thanks to the three furlough days that the school district had to take!). The first month of summer was pretty cool, literally, as our temperatures were in the high 70s/low 80s which didn't make swimming all that fun because it was just too cold! We had lots of playdates, free movies and the girls tried a gymnastics class for the first time and LOVED it. By the time the cruise came around, the rest of the summer flew by :( We were able to squeeze in a couple of river trips, which is always a fun time, and some swim playdates once the weather warmed up; we pretty much lived in the pool for a while there. We managed to only have a couple of pajama days (this is when we spend all day in our jammies, well, because we can) which is pretty good considering last winter break we had about five pajama days with fifteen days off of school :) We had an awesome and very memorable summer and I'm so sad that it is over...




This summer Carlie was FINALLY able to ride Big Thunder with the help of her 'high heels' and she had so much fun. As soon as we got off, we stood in line to ride it again...

Hawaii Pictures

Mike and I had such a great time while in Kaua'i! Our time there went by so quick and I can't wait to go back (with the girls) for another visit. By the time we left I felt very comfortable navigating the island, a benefit to being on a smaller island. We tried to fit in as much as possible without feeling like we were doing too much, after all it was vacation! It was so BEAUTIFUL there, absolutely breathtaking!! I wish I had a better camera with me, but I still managed to get some great shots...I hope you enjoy them.

Dance Competition Cruise

The week before Mike and I headed to Kaua'i, Caiteyn and I went on a four day competition cruise with our dance studio for Nationals. We had a ton of fun with all the other girls and moms, and it gave Caiteyn and I some time to hang out, 'just the two of us'. Caiteyn especially loved the fact that she could have soft serve ice cream at any time during the day, my only request, that she eat something that I would approve of first...the first couple of days that we were home, we were both suffering from soft serve withdrawals :)

All of the teams competed very well and there is talk of doing Nationals at Sea next year...I can't wait!

Hope and Caiteyn...TOO COOL!

Hope, Arianna and Caiteyn before we left port.

Goodbye Long Beach...

Hope and Caiteyn in Catalina.

When we reached our first port of call in Catalina, we were walking around the little town when we noticed a tent that had "Locks of Love" written on it. One of the girls from Caiteyn's team told her mom that she wanted to donate her hair (I guess it's something that she has been wanting to do), so Hope walked over to the tent and let the women know that she would like to donate her hair. After the women made sure that it was OK with Hope's mom, she sat on a stool and had 10 inches of her hair cut off. Hope's generous donation inspired two other girls from our team to donate their hair as well...by the time we made our way back to the ship, only four donations had been made, three of them being from our studio.

Hope about to have her hair cut.

Hope's cute new cut!

Caiteyn and Arianna hanging out with the bison.

Silly...

Night of the Captain's Dinner.

Some of the dancers and teachers of Studio Elite.

10 Years

WOW! 10 years...I remember when we were newlyweds thinking about our 10th wedding anniversary and thinking how far away it was; looking back on it now, those 10 years have gone by really fast (as does everything else when you get older *sigh*). I have always had the mindset that marriage doesn't just happen, it is something that you MUST work at, and our marriage isn't any different. We have had many ups and downs with MANY challenges along the way, but no matter the challenge, Mike and I knew that divorce was NEVER an option! We committed to each other, for the rest of our lives, that we would continue to work on our marriage forever. I'm proud to say that we have now been married for 10 years, because when you really think about it, we are a success story and we have my parents (married for 35 years this October) and Mike's parents (married for 45 years this November) to thank for being role models for us. Many of my friends have gone through divorce and when I look at why they divorced, it's because one of them was 'done'. How can you just walk away, how can you be 'done'? A commitment was made...and to walk away without even trying to 'make things work' is just mind blowing to me. So I applaud ALL the couples who have made a commitment and are choosing to 'work' on their marriage...congratulations!


To celebrate our 10th anniversary, Mike and I are in Kaua'i and we're having so much fun. The last couple of days we have been taking it easy, exploring the beaches and the island, and starting today we have some adventures planned that we are both really looking forward to! Be on the lookout for a post all about our trip :)

HAPPY 10th ANNIVERSARY MIKE!! I LOVE YOU BEYOND WORDS!!!

Keoneloa Bay, Shipwreck Beach

Dance Recital

The girls recently took part in our studio's dance recital and while this was Caiteyn's fourth recital, it was Carlie's very first one. Carlie has been on stage before as part of the studio's competition team, but this was the very first time that she danced on stage without her sister standing next to her! They both did such a great job and I couldn't be any prouder of them. It was a very long day for us with MANY costume changes, but it was all worth it to see their faces light up when they were performing.

My day consisted of changing one of the girls pretty much every other song (and therefore I was only able to see their performances from the wings-so thankful for DVDs!) so I was only able to get a few pictures from my camera. Most of the pictures are from Papa and Nana who enjoyed the performance from the audience, and here are some of those pictures for you to enjoy :)

I'm so proud of you Caiteyn and Carlie and I LOVE watching the two of you dance!

Happy 7th Birthday Caiteyn!

How is it possible that my first born is 7 years old today?!? I guess what they say is true, time flies when you're having fun! I couldn't imagine my life without you Caiteyn, you have brought so much joy and purpose to my life that I wouldn't be the person I am today if it weren't for you. I enjoy every minute that we have together and I am proud to be your Mom...I love you Baby Girl!

HAPPY BIRTHDAY CAITEYN!!!

Gabriella

During spring break, the girls and I had the opportunity to meet Kristi and her daughter Gabriella. We were first 'introduced' to each other through Andrea, Owen's mom. Andrea had asked if I knew of Gabriella and when I said no, she explained that she was waiting for a heart transplant and was being treated at Loma Linda. I immediately made contact with Kristi and found out they had a clinic visit coming up and they were planning on staying in Southern California for just over a week because the jet that would be flying them out (they are from the Phoneix area) if they 'got the call' was undergoing maintenance. Kristi is a DIE HARD Disney fan and explained that they would be spending a couple of days at Disneyland...what better place to meet each other?!? We hit it off right away and the girls fell in love with Gabriella and Kristi.

Gabriella and Caiteyn under Cruella's spell.

Standing in line for Toy Story.

Gabriella, Caiteyn and Carlie waiting for the Electrical Parade to start.

Fast forward to April when Kristi and Gabriella had to travel back out to California for another clinic visit. They were lucky enough to be able to fly out this time and after Gabriella's check-up had a few hours to kill. I invited her over to our house to hang out for a bit which allowed Kristi and myself to do some catching up. We ended up going to dinner before their flight left and were having such a good time, that they almost missed their plane.

A few weeks ago, Kristi got 'the call' which turned out to be a false alarm. On Monday, May 17, she got another call and this time it was for real! I immediately sent her a text and explained to her that I would be at the hospital within a few hours. I was lucky enough to see and spend some time with Gabriella as they waited for the donor heart to make it back to the hospital. Gabriella, as well as Kristi and her husband, were so strong. Watching them say goodbye to their little girl before she left for surgery made my heart ache, it brought back so many memories.

Gabriella did great during surgery and 48 hours post-transplant, she is no longer intubated, is not requiring oxygen, has had her foley and arterial line removed, and is walking the halls...she is a strong little girl and I am so glad that she and her sweet family are a part of our lives!

Happy 4th Birthday Carlie Girl!

It's hard to believe that FOUR years ago today, we welcomed Carlie into our lives and hearts forever! She has brought our family so much joy and we are forever grateful that we were chosen to be her parents; she has taught us so much about life! Through her, we have had the opportunity to meet someone wonderful people who have changed our lives forever!

A collage of Carlie's past year...

From Collages

HAPPY BIRTHDAY CARLIE GIRL!

Mommy, Daddy and Sissy are very proud of you and love you so much!

LLUCH Gala Pictures

The Loma Linda Children's Hospital Gala went well and was a nice night helping out our hospital that has helped us in so many ways. I guess I didn't realize just how big the event was, there was about 1,000 people there! They held both a silent auction and a live auction and raised about $675,000! I couldn't believe the generosity of the people who were there, it was amazing and inspiring!

My camera wasn't working properly so I didn't get the amount of pictures I had planned on, but my friends took some and passed them on to me...

Dr. Bailey and our family

Myself, Carlie and our good friend Robin (who adopted a sweet little girl with Shone's Complex)

Four Heart Families

Honoring Dr. Bailey and to his left, Teresa Beauclair, Baby Fae's mother. She gave heart families like us a gift when she sacrificed the life of her daughter for the future.

LLUCH Gala

Every year, Loma Linda University Children's Hospital holds a black-tie optional gala to help raise money for the hospital. The theme this year is Got Heart!, to celebrate the 25th anniversary of the first pediatric heart transplant. As I have mentioned before, Dr. Bailey is Carlie's cardiothoracic surgeon and he was the first doctor to try, and later be successful, a pediatric heart transplant. So while the event will be raising money for the hospital, it will also honor Dr. Bailey and his accomplishments.

This past summer Carlie was invited to be part of a photo shoot that would be used for the gala. During the shoot, Carlie was being very uncooperative and I thought that the photographer would be lucky to get one good picture of her...imagine my surprise when I received this in the mail...
...not only did they get (and I really do think the only GOOD picture of her that day) a picture, but Carlie became the 'face' of the event and we couldn't be more honored to be part of such an important event.

Around November, we started receiving phone calls and emails from family and friends telling us that they had seen the picture of Carlie in the paper or in our local magazine but the biggest surprise was when I got a phone call from another heart mom asking me if she had just seen Carlie on a billboard (it was one of those digital billboards and she was driving so she wasn't completely sure if it was her or not), I told her that I had no idea. I sent my in-laws out to investigate because it was close to their home (about 30 miles from ours) and they emailed me this... ...I couldn't believe it! And then about a month and a half ago, another heart mom sent me this...

...which is a billboard very close to the hospital. Who knew that the ONE picture that the photographer got would show up all around town?! WE ARE SO HONORED TO HAVE OUR SURVIVOR BE PART OF SUCH AN IMPORTANT EVENT!

As much as we would love to be part of the event, it wasn't looking like we would be able to afford to go ($200 per person wasn't in our budget) when one of our favorite nurses was able to get a whole table donated to heart families! We are so excited to be able to spend the evening raising money for the hospital as well as honoring such an important man in our lives, Dr. Bailey.

Pictures from the event will be coming soon!

1st Dance Competition

This past weekend was the girls' first dance competition experience. Since the beginning of the season, this is what Caiteyn has been working so hard for. Originally the whole dance team thing was just something that Caiteyn was going to be doing, but about four months in, the director came to me (and another parent of a 'little' sister) asking if Carlie could be included in the production piece. Our production includes all of the different teams (jazz, tap, hip-hop, gymnastics) and has been choreographed to the music from Seussical the Musical. Each team represents a different character from Dr. Seuss' books; The Cat in the Hat, The Grinch, Green Eggs and Ham, Whos (which is what Caiteyn's team is) and Thing 1 and Thing 2...can you guess which character Carlie is? Thing 2! Seeing bits and pieces of the dance for the past 7 months, I was excited to see it...and they did great, taking home the highest award.

Thing 1 and Thing 2 waiting to go on stage.

Green eggs and ham.

Whoville

About a month after I agreed to allow Carlie to be part of the production piece, the director came to me (and the Thing 1's mom) asking if she could choreograph a competition piece for the "little sisters" to compete in the under 4 category. This was a tougher decision to make because first of all, Carlie would be on stage without her sister, not to mention I wasn't sure if she was ready for this type of "look at me" attention. It would also require a bigger financial and time commitment...after talking it over with Mike, Carlie and the other mom, we decided to go ahead with the dance. During the first practice, the 'big' sisters went in to learn the dance as well so that they could help their little sisters practice it at home and after about 10 minutes, the director came out and said that she wanted the 'big' sisters to be part of the dance as well; I thought it was a great idea, I didn't have to worry about Carlie being afraid on stage without her sister. On the day of the competition as they were ready to go on stage, I was very nervous for Carlie. She has been going through a separation thing lately and I was afraid she would either not walk out on stage or see everyone in the audience and run off stage...I'm happy to say that Carlie did GREAT! She was smiling, having a lot of fun and she didn't forget any of the steps. I had this knot in my stomach and my eyes were filled with tears because I was so PROUD of her! Caiteyn did an awesome job as well (this was not her first time on stage, being on stage is the whole reason she wanted to be on the dance team!) and looked like a pro up there!

Caiteyn's team dance was the cutest! When we found out which song they would be dancing to, "Proud Mary" by Tina Turner, we couldn't wait to see what their costumes would look like. With the costumes came a wig, and let me just say, when the girls walked onto stage, the audience LOVED IT!

Both girls did great and we can't wait for the next competition!

Did you ever wonder how mothers of disabled children were chosen?

After Carlie was born, someone shared this beautiful poem with me (which makes me cry every time I read it) and it has become one of my favorite poems and so I would like to share it with all of the Heart Moms, as well as any mother who has a child with a disability...enjoy.


Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint…give her Gerard. He is used to profanity"

Finally He passes a name to an angel and smiles, "Give her a disabled child." The angel is curious, "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today; she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" Asks the angel, his pen poised in mid air.

God smiles, "A mirror will suffice."

CHD Awareness Week

Today marks the first day of Congenital Heart Defect Awareness Week (February 7-14) and in honor of this week, Carlie and the many children who are living with or have lost their life to a CHD, I would like to share some information with you and ask that you share it with others around you.

*CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

*1 in 10 of those born with a CHD will have a fatal defect.

*In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

*The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

*There are approximately 35 know Congenital Heart Defects.

*Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

*There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

*With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

*Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

*Only about 30% of the children who need a heart transplant receive one in time.

*About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Two years post-Fontan...

...and life is SWEET!

Happy 2nd 'Fontan'niversary Carlie...you are a MIRACLE!

I 'Heart' Heart Families!

I LOVE living in Southern California! Many people choose this area as a vacation spot which allows me the perfect opportunity to meet other heart families. Last year I was able to meet the Allred Family when they decided to take a Disneyland trip. I enjoyed spending time with them and the girls had so much fun with their 'Seattle friends' as well. We had great time getting to know each other and sharing our experiences.

Maddie and Carlie, January 2009

Just before Christmas, I received an email saying that they would be visiting the area again, I was so thrilled! So last week, the girls and I drove down to Oceanside to hang out with the Allred Family again! Being around their family feels so natural, like I have known them for years. Katie and I were able to talk about things so easily and again, the girls had so much fun with their friends; I told Katie that I could get use to them visiting once a year! Thank you so much Allred Family for allowing us to spend time with you...you are so kind and I hope to see you again very soon!

Maddie and Carlie, January 2010 (Maddie wasn't very interested in having her picture taken)

A few days later, we drove out to Disneyland to hang out with the Ridgway Family. We have met them a handful of times during their previous Disneyland visits and this time they had their new addition with them, sweet Kanyon. The girls always enjoy seeing their Arizona friends especially since their girls and Caiteyn and Carlie are so close in age. Our visit was a short one, but just as fun!

Caiteyn, Emerson, Ainsley and their friend Tucker waiting in line for Toy Story.