Giving Back

Last year was a Christmas season unlike any other for my Family. Chris, Taimi and I spent most of the holiday season at the hospital wondering if the new and sweet addition to our family would survive birth, we also wondered what our lives would be like after Zuzu was born. After a year of over 500 hours at hospitals and medical clinics and 2 open heart surgeries our daughter is here and has been growing for 10 months. Through all those months of uncertainty the miracles that kept us going usually involved family, friends, loved ones, answered prayers, medical miracles, support and hope of every kind from all over the world, literally.

What my family and I have come to believe is it's not what happens to you in life, cause things will happen. it's how you handle it... and it's what you do because of it.  As a result we decided how we want to respond, we want to pay it forward and this is one way that we are doing just that.This Saturday December 7 we are holding a charity Christmas party. 

Since Zuzu like all kids emanates pure love, charity and hope we decided to name it after her, 

Zuzu's North Pole Adventure and you're all invited!

We are donating all of the proceeds to families with special needs kids. Some of the proceeds will be used for sub for Santa  Much of the proceeds will go to local families who are swimming in medical bills and are having a hard time catching a breath. 100% of all proceeds will be given away to these families based on the seriousness of their needs. We have partnered with the United Angels Foundation to identify families with the greatest needs. All expenses for the event are covered or have been donated. So that not a single dollar will be wasted.

The event is in the Alterra gym in Provo at Alterra Gymnasium – 

5132 North 300 West Suite 150 Provo, Utah From 12:00-3:00 pm.

Please join with us in this special and fun Christmas event that will lift heavy hearts, and bring peace and hope to many local families this Christmas season.

Santa will be there with many of his elves. 

Tea with Mrs. Clause.

 Crafts.

 Games.

 Christmas Bouncy houses and obstacle courses.

 Local food vendors.

 Music.

 and so much more.

It's going to be a lot of fun! 

Please come and show your support.
With much appreciation and love,
Ashley, Chris, Taimi and little Zuzu and Event Founders

If you are unable to attend but wanted to help people in need this holiday season you can donate by clicking this link and selecting an amount 

30 Isn't so dirty!!

I turned 30 last month. Which inspired me to make a list of all my accomplishments in my 20's.

These are most of them,

College

Served a full time mission for my church in Ohio

Got married

Had a baby girl

Traveled the world

Lived in 4 different countries

Traveled and visited over 8 different countries

Given away hundreds of a Books of Mormon

Had another baby girl

Concurred the NICU

Survived through 2 open heart surgeries

Moved over 15 times together

Gained 20 lbs lost in gained it and lost it again (the joys of pregnancy) 

And still in love and happily married 99

This is the first time since 2009 I have been home to celebrate my birthday so naturally my sister decided to wake me up with a dance party and whisk me away to breakfastat 630 AM. It was amazing! Really a lot of fun. It Brought me back to jr high and high school which seemed to have been the theme for the day and I wouldn't have wanted it any other way. 

Chris took me shoppig and to the movies during the day with our little peanut Zuzu.

For the rest of the night I really didn't want to celebrate my 30th the way a 30 year old should I wanted to celebrate my birthday the way my 10 year old self would have. Which meant CLASSIC SKATING of course. 

So we skated. And when we got tired of holding up the kids up while they attempted to roller skate they scootered around. We laughed. We got chased my ghouls which rocked my world. We danced. We fell and dag nab it we had the best time doing it. 

I'm so excited to be 30 this decade is going to be amazing.

Please don't apologize

I know everyone means well. and I appreciate all who have reached out to us. Everyone is so supportive and helpful. But there is one piece of advice I would like to share. If you are dealing with the sensitive and alarmingly new experience of getting the chance to welcome a new baby with down syndrome into your family, circle of friends, neighborhood or religious groups please oh please don't apologize!

These parents have been given such a rare and unique opportunity to rear and teach, love and cherish these kids. 

Yes it's hard. Yes it takes a lot of work. Yes its a life long calling. Yes it's new and different. Yes its not at all the way we saw our lives going. But when are those things bad?

 Please don't be sorry for me! I'm not! I wouldn't change my life and MORE IMPORTANT I wouldn't change Zuzu. She is who she is suppose to be and if I changed anything about her I would be changing who she is. I would be changing what makes her special what makes her unique. I would never want that. God made her this way for a reason. Zuzu has a purpose and a mission on this earth that I may never understand or comprehend. And I get a front row seat! 

We have been together for 9 months now and already She is easily the most cuddly baby I have ever held.  So affectionate! so loving! So pure! So angelic! She has the most amazingly perfect features that I would never dream of changing. Her rare cry is honest and true. She is the bravest and strongest little girl I have ever encountered. Her smile lights up any room and warms every heart. She wraps a peaceful and calming blanket around anyone who holds her. She gives me a perspective that changed my life, changed my heart-for the better! If your having a bad day, month or year just come hold Zuzu she makes everything better.

Sometimes I ponder how, there are so few little angels with an extra chromosome running around and I GET TO HAVE ONE OF THEM!  I have been entrusted with this rare opportunity or better yet adventure. So please don't apologize. I'm not sorry. Be happy for me. And help me soak in this girl we call ZuZu. 

***but feel free to be sorry for her heart :) that just stinks!!! Bad!!! ***

Down Syndrome Awareness Month

1 out of every 691 live births are born with an extra chromosome. An extra piece of heaven that changes every life for the better. They have been given some designer genes that makes them special, rare, precious, incredibly cute and different.

Down syndrome is a genetic condition that causes delays in physical and intellectual development. It is the most frequently occurring chromosomal disorder. 

Down syndrome is usually caused by an error in cell division called nondisjunction. No one knows why this occurs. However, it is known that the error occurs at conception and is not related to anything the mother did during pregnancy. It has been known for some time that the incidence of Down syndrome increases with advancing maternal age. However, 80% of children with Down syndrome are born to women under 35 years of age. 

It is important to remember that while children and adults with Down syndrome experience developmental delays, they also have many talents and gifts and should be given the opportunity and encouragement to develop them.

Most children with Down syndrome have mild to moderate impairments but it is important to note that they are more like other children than they are different. 

That is the point I really want to make. Things come more difficult for my little Zuzu. Holding up her head is a HUGE accomplishment. Doing tummy time and learning to sit up is like running a little marathon for her. She has to work harder and longer and more often. 

Children with Down syndrome have a higher incidence of infection, respiratory, vision and hearing problems as well as thyroid and other medical conditions. 40% have a congenital heart defect while others fight leukemia. 

BUT they are more like other children than they are different. 

Zuzu has the prettiest blue eyes coupled with the longest lashes. she has a huge   gummy grin that she takes advantage of which makes you laugh and sometimes cry. she will stare into your eyes healing your soul. She giggles at her big sister. She loves the bath splashes and plays as long as we will let her. She makes funny faces the first time she tastes baby food. She hates tummy time. She loves to cuddle and be kissed. She strokes my face grabs my nose and pulls my lip. She is just an adorable little girl with the world at her finger tips just like yours. 

My wish is that babies, kids, teenagers and adults with Down Syndrome will have equal opportunity. That people won't look at their adorable distinguished faces and label them! That people won't look at the special shape of their eyes and set them aside in the classroom or workplace. I wish and hope that people will realize that everyone even people with Down syndrome have gifts and talents. Most of which will influence us, help us and change us for the better. 

God made these rare special unique individuals for a reason. And that reason may be different for everyone.

Please oh please see them for the unique individuals they are and not just someone with Down syndrome. 

Happy Down Syndrome Awareness Month! And thanks for everyone's love support and  acceptance. 

Information from www.nads.org

My better half is fearless

Chris knew Zuzu would need a lot of attention, doctor visits, surgeries and therapy. Chris also knew a 9-5 was going to keep him from most of those things. 

Chris is devoted! Devote to God. Devoted to family. And devoted to his role as a husband and father. So he did what most men would do and started something amazing out of thin air.

He started his own company. He even slapped his name on the title. He is so fearless. And totally put himself out there! Amazing! I wish I was more like him. 

The company is a basketball academy that tailors to the individual. Chris takes hard working kids and makes them so much better. He takes goals and helps kids reach them. He takes desire and creates passion. He takes frustration and replaces it with love for the game. He molds these kids into something amazing. And Chris does It with such ease, care, positivity, and Understanding.

It's inspiring and fun to watch. 3 friends didn't make the team last year so naturally they started working with Chris. We are happy to report they all made a team this year. And it's all cause of their hard work mingled with Chris training motivation and direction. One high schooler was CUT from the varsity HS team but he kept working with Chris. Where is he now? On a full ride scholarship at the University of anchorage Alaska

Chris put his dreams on hold (playing professionally) and put his family first. A righteous desire that blesses us tremendously. 

We started with one gym in Lindon. And now we have grown to 4 gyms throughout Utah county and hope to expand further south.  We just teamed up with Aces Athletics in Lehi on Traverse Mountain. 

In the last year we have moved to France and back again. Had a baby. Baby had 2 heart surgeries. Moved again but this time 3 cities over. And Started company. And I wonder why this year has flown by! seriously where does the time go. we hope to go back to Europe next year mostly because in Europe time stands still. Everything and everyone moves slower so time moves a bit like a turtle. And I love that. 

But in the mean time CMBA welcome to the family. 

** logos created by Kass Miles ** pretty good huh. 

Not suffice

 Hand drawn by my brother Kevin Cassin Jr. @lilboyillinois 

We would like to express our pure and complete gratitude for those who donated to help With Zuzu's surgery expenses! With the biggest all 4 of us can muster THANK YOU!! 

Zuzu's surgery was a success. She is one of 14 in the world who have this new melody valve replaced in the mitral position in the heart. The valve is made out of the vein of a cows jugular. Because of it She is breathing effortlessly, eating great, and finally growing! 

What's next for Zuzu? Once a year for the next few years as Zuzu grows She will need to go back to Boston to get the valve dilated bigger through a catheter. Eventually the valve will need to be replaced. However hopefully by that time they will have better options for Zuzu. 

Thanks to this new breakthrough surgery Zuzu will have significantly fewer open heart surgeries, Quicker recovery time, Half a daily aspirin instead of a daily shot to regulate her blood, No oxygen! No diarrhetics, all round a much better quality of life and a significantly reduced risks of blood clots!

Zuzu was the first in utah to get this worldwide breakthrough surgery and is now bringing the surgery to her home state which will bless many many people. 

thank you for playing a huge part! Thank you again from the top to bottom of our hearts. We will forever be grateful for your kind generosity, especially our little Zuzu!  

Love, Chris Ashley Taimi and 
OUR CHAMPION ZUZU

I wish I could meet with all of you personally and somehow show you how much it means to us. Thanks again

My boy turns 27

Chris and I love dancing and singing to Bruno Mars so awhile back I bought him Tickets to Bruno Mars for his birthday. I surprised him the night before the concert. He was shocked for a few reasons 1. His birthday wasn't for another week. 2. Because we were leaving the following morning for Boston. 3. Because we were leaving that morning for Boston. 

The first 30 minutes or so he was on the phone talking to clients. But my quiet patience paid off while I waiting till he was done. Just trying to be a good wife.

We needed it! We needed some alone time to sweat, scream, sing and dance. And oh did we dance! 

It was so nice to let a few of our worries and some heavy weight we were carrying go for a few hours. 

This heart reminded me of Zuzu. I was crazy about it the whole show. 

I have to hand it to Bruno and his crew cause we had the time of our lives. It was more like a dance party then a concert and he was hilarious! 

Did I mention we were on the 10 row??

He even played a few covers that were not his which was great to hear and sing. Poor Chris is so tall and so nice so he spent a lot of the time sitting on the seat. But even when he does that we are still eye to eye. 

My souvenir cup.

We were in traffic for a good 50 minutes. So we talked and laughed. The traffic was a great part of our night. 

We took the Mustang so it was a party the whole way home. 

We celebrated his real birthday in Boston. Highlights include bucks, Z, daughter of China, subway, and hospital food. (Insides jokes)

Happy birthday Chris! Every year you get better and better. 

Before and After

It's no secret Boston is the MECCA of medicine with Harvard and MIT along with others jumbled together in one little city. 

For Zuzu, being here in Boston it made and will make all the difference in the world. 

Here is Zuzu after both her surgeries. The one on the left is after her first in SLC.  It's so sad. She is swollen beyond recognition! Not to mention she has a nasty breathing tube in her mouth.

The one on the left is right after surgery here in Boston. You can see for yourself the huge difference being here makes. 

Primary's sent Zuzu home in heart failure. She was starting to swell, her skin was getting dusky, her breathing was very labored, she was losing weight. she hasn't gained not even a pound in over 3 months. Her heart was swelling. 

Any way, when we arrived in Boston they ran some tests that measure the pressure on both sides of her heart both going in and coming out. Zuzu's was in the 30's before surgery. And as you can see now around 7-10. (6-9 for her age is normal)

This was the size of her heart before and right after surgery. I'm sure it's gone down a little more. 

So as you can see we are thrilled with the results. Zuzu is doing spectacular, probably because she is spectacular!

We just wish we could have avoided this second surgery all together. 

Boston Bound

It all happened so fast. It took far to long for poor Zuzu to get a scheduled surgery date here in Boston. But when she did boy did things move quit quickly! 

In a few days we had to book flights, arrange a place to stay, get all the paperwork and plane friendly oxygen, pack, celebrate our nieces 2 birthday and find a sub coach for CMBA to name a few.

Zuzu has been in heart failure ever since her last surgery. So once we got on that plane it felt so good to know soon Zuzu will be in the care of the best doctors the world has to offer. At the best hospital. Needless to say we were beyond excited with limitless nerves for Zuzu. We are sick of watching her struggle and suffer. Not to mention on our flight we got to hold Zuzu the whole time which is always so very very nice.

Since we flew on the red eye when we arrived at 6am we checked in and slept a good 4 hours. Then we just tried to enjoy the little time we has left together before Zuzu would be admitted and have her second open heart surgery in a month at 6 months old. 

Boston is beautiful so the short walk to the hospital is thoroughly enjoyed even though at times I walk it 6 times a day. My mom flew in the night before surgery to help where it needed. Bless her heart! We didn't know how much we needed her until Chris and I were sick with fevers and chills. My Mom got to be with Zuzu the night before her surgery so we didn't get her sick. It was hard I hated it! It was the last thing I thought would happen. But it did! 

It however wasn't the hardest thing that happened. 

One of the hardest parts is saying goodbye. everyone is watching as you cherish the last few fleeting moments. kissing her, touching her precious face, trying to express the unmeasurable love you have for her all while wanting so bad for her to understand that you wont be far and not to be afraid! and then the anesthesiologist whisk her away! I hate it! I hate it so bad. 

This time around a nurse had to hold me up and walk me to the waiting area. Which is the second worst part waiting... 

The surgery lasted a long 7 hours. But we didn't get to see her for 9. The doctor tried to repair the valve in her heart but knew if he did she would need another surgery in a few months so he replaced the valve. Which means Zuzu will need aspirin daily. A visit to Boston every 6 months to a year to expand the valve as she grows and eventually it will need to be replaced! We are hoping the next surgery wouldn't be for 8 years but it will most likely be much much sooner:( 

She is doing great! Zuzu the last 3 days has been given meds to give her paralysis to allow her body to fully rest and heal. Its hard to see her lay there with no emotion lifeless. BUT Today they slowly took her off it and have been allowing her to breath on her own a little, wiggle and shimmy and even fed her through a tube :) yea!! I told her I loved her today and she moved her head in my direction. 

That right there folks is what we call a tender mercy which made my day!

She is easily the bravest and strongest person I have ever met! I'm amazed at what she takes on and conquers on her own. And it's no surprise she does especially with her fan club all around the world cheering for her, thinking about her, supporting her, and praying for her! 

Thanks to each of you!

Tomorrow we are hoping to take the breathing tube out so I can hold her. Fingers crossed!!!!

Ready or not? We are so ready!

Zuzu, Taimi, Chris and I are boarding a flight to Boston Saturday. Zuzu must report to Boston Childrens Hospital Monday morning at 7am for blood work, tests, a meeting with one of the best cardiac surgeons in the WORLD (wowzers) and a tour of the hospital. 

(My sister Allison drew this with Boston's skyline. I love it!)

Then Tuesday I will hand Zuzu over to the Dr. Again. So they can open her up and attempt to fix her heart, again. She'll need to go through the daunting recovery, again. With all the IV's, tubes, nurses, pain medicine and risks. 

I'm so nervous I have lumps in my throat and butterflies flying around in my stomach. However the only difference between this surgery and the last one a month ago is how many of you incredible people are praying for her, thinking about her, sending her messages and helping her get to Boston.

Some incredible women who are big fans of Zuzu have donated their goods, talents and time for her and her cause. Check out the heart Zuzu fundraiser. There is the cutest stuff. 

heartzuzu.storenvy.com

If you would like to make a donation there is a PayPal open in Zuzu's name at paypal.com under zuzunoel@gmail.com

On behalf o Zuzu and my little family with all the energy of my soul- THANK You for your kindness, donations and helping spread the word. 

God bless you.