Isaac’s 9th Birthday aka Anything is Possible

For many who hope to be parents, dreams and aspirations for our children start while they are still just a prayer sent to heaven, wish upon a star, a coin in the wishing well.

Anything is possible. We could get pregnant right away, could take a while, could need help, could turn to adoption, could be a boy, could be a girl, could be TWINS or more?! We pray and hope for a healthy pregnancy, baby and momma and do what we can to encourage the best of outcomes.

While pregnant we look forward to our new baby and wonder whether baby will be full term or spend time in the NICU? Will he or she look like Mom, like Dad or like someone’s Great Great Grandmother from the family photo albums? Will they have all their fingers and toes, will they be able to see and hear? What if they have a previously undiagnosed “birth defect”? Of course we will love them anyway, but how will our lives change if our child has struggles? Anything is possible.

We start to wonder what kind of human we can raise. Perhaps hope that they can be athletic, maybe a jock, smart and kind, so very kind too. Someone who sticks up for others. Someone who wants to make the world a better place. We hope they do well in school, so that they can have any profession they desire, especially one that gives them a comfortable lifestyle. We hope to be good role models as anything is possible.

When Isaac’s road to Tay-Sachs diagnosis began with a wiggle in one eye, we heard he might need glasses for that wiggle. That seemed so big for our 7 month old baby. My husband worried our son could be bullied in school. When we initially learned it was a “metabolic disorder”, I knew I’d do anything he needed for the best diet. Then we learned it was cell metabolism and a terminal disease. We couldn’t take the diagnosis for our otherwise normal appearing son without fighting back. Anything is Possible? We pray?

Isaac received a stem cell transplant because anything is possible. I had to advocate and advocate and advocate some more. He was young enough, healthy enough and had potential to save his quality of life in addition to quantity. On his first Birthday, Thanksgiving Day, he was still in the hospital for the transplant process and he had a massive GI bleed that night. We almost lost him. Miraculously, he made it. I still get goosebumps thinking of all the prayers that helped him and us make it through those dark nights and days in the PICU. Anything is possible.

Isaac continues to teach us. Every year something new. Sometimes every day. We live life knowing Isaac does not have an expiration date. Nor do I, nor do you. Some days are blissful, some a grind, some days we need reminders to sit in gratitude for all we have. Most days we know, Anything is Possible.

So today we wish Isaac the very happiest of birthdays and wish for many more in good health and happiness.

Isaac at 24 hours old, discharging from the hospital.

Isaac playing with his food. 7 months old.

1st Birthday. Duke Pediatric Bone Marrow Transplant Unit. (Before the nightmare the evening brought)

Halloween, a month before Isaac turned 3.

August 2014 with Ms. Leslie, his home school teacher.

Summer of 2015 with Jake.

Isaac’s 5th Birthday.

Isaac’s 6th Birthday and Thanksgiving at our house.

August 2017.

Isaac’s 7th Birthday.

Isaac’s 8th Birthday.

Day before Isaac’s 9th Birthday.

Auction Items for Fundraiser

Bling Basket will include a Bottle of Wine

Want to get a jump on many of the auction items available at Isaac’s Fundraiser for Cure Tay-Sachs Foundation? Take a look, send Lorelei a private message regarding your bid! Many of these will go for steals, all have been donated with intentions of raising funds for a Cure! Thank you! 😀

 

Joining Us?

Isaac’s Celebration and Fundraiser to Cure Tay-Sachs is in less than 3 days! Have you bought your tickets yet? Follow the link on the main page of this site. Get $7 off each ticket when you click the box for add discount code and use 777 through Tuesday night at midnight.

Wondering about some of the prizes and raffle items? With your big winnings with your casino funny money, you have chances to win a vacation to Laughlin for 2 or one of 2 packages of 4 tickets to the Del Mar Horse Races. We have quite a few auction items including a basket of goodies and 3 class pass to OrangeTheory Fitness! You could win the opportunity to see what is helping keep Isaac’s Momma strong for the long haul. Read the latest blog post for more items.

We can’t wait to celebrate with you and thank you for your support! Please invite your friends and share with everyone!

Someone is ready for a good time!

Halloween 2017

Where have we been? Months and months without a post? My apologies! Please enjoy Isaac’s Halloween fun!

Isaac helped make his truck. Cardboard, duct tape, spray paint, construction paper, aluminum foil. Amazing what you can make at home!love visiting Dr. Steve and getting checked before a busy evening!Visiting our local Fire Department. They were busy so no picture with a big truck today.

Isaac met Santa and shared his Christmas Wishlist

Wondering what Isaac might like for Christmas? We’ve been asked a few times so thought we would share. 

A Cure for Tay-Sachs. And seizures. And all things fatal to children! Duh. A start?: CTSF.org We’d be pleased if you donated in Isaac’s honor. 

Clothes. He’s in a 5-6. He already has plenty of sweaters and jackets. Shirts long sleeve and short, comfy pants, a decent pair of jeans, or jammies are always great choices!

This Swing and possibly the insert: https://smile.amazon.com/gp/aw/d/B0018QEFRO/ref=aw_wl_ov_dp_1_1?colid=KOJ1P8RXCUA2&coliid=I3B058H4WMVVUJ

Toys that respond to sound or touch of easy to access buttons like: https://smile.amazon.com/gp/aw/d/B00BSWS8LM/ref=ox_sc_saved_image_8?ie=UTF8&psc=1&smid=ATVPDKIKX0DER

Isaac likes fun toys, music, lights and we are okay with that! 

Hand Santizer and Soaps. Can’t get enough of the smell good types since we use them allllllll the time, but don’t generally splurge on the fun stuff ourselves. 

Isaac went to see Santa yesterday but Santa didn’t share what else was on Isaac’s list. 

   
 
He did get a little photo bombing from a sneaky Gingerbread man!

   
 
And then we made ornaments!

   
Wishing you and yours and very Merry Christmas! 

Day +1,500 and 2 days till officially 5 years old

Thank you, thank you, thank you for your continued love and prayers! Isaac continues to be a a miracle and proof of the power of prayer. While I am nervous for Tuesday a little, just based on his history of scary incidents on that particular day, I feel so overwhelmingly blessed to be able to celebrate him this whole week! Lots of cuddles for him! We aren’t doing a big celebration at the moment though since instead he is getting the biggest birthday present I ever heard of…. A completely remodeled bathroom attached to his own bedroom in the home we are blessed to be new owners of and moving in this coming week. Truly God moves in mysterious ways! Homeownership was no where on the horizon just 6 months ago!

Since we aren’t having a party, we did the next best thing and took Isaac to Disneyland, one of the Happiest Places on Earth. We Celebrated our buddy Sage’s 1st Birthday (actually born on 11/20, not just celebrating all week like Isaac!) with his Mom and Dad Haley and Matt. We felt his presence with us throughout the day and imagine there are no lines in heaven for all the rides!

Please enjoy some pictures from the day!
   

I love Christmas and Christmas decorations and Disneyland! 

  Princess Hayden is 5 years old too! So nice of a real Princess Isaac’s age to pose with him for a picture!

  
Lots of parades and live music throughout the day. Isaac really enjoyed all the different types of music!

 
Make a wish at the wishing well Isaac!

   
 
A little monorail action. Made it easy for finishing up a feeding and meds!

   
It’s dark and interesting on Little Nemo!

    
 
Thank you so much Nurse Rita for coming and for everything!

   
Tinkerbell’s ‘warm up act’ was so kind! Love her!

 
Sage’s parents Haley and Matt!

   
Tinkerbell

 
It’s a Small World lights up at night!

   
Our own boat on It’s a Small World?

 
2016: Around the corner!

 

Watching and listening intently.   
 Isaac and my favorite ride. I love how much attention Hawaii and the islands get! 🙂

   
Hi Ariel!

Hi Lilo and Stitch!  

  
 
Shake it, shake it!

   
 
The weather was perfect!

 

Jack in the Haunted Mansion.   
 
Fantasmic was Fantastic!

   
    
Isaac getting some cuddles during the fireworks!

 
The tree at night!

   
Looking forward to future celebrations too!

 
A very happy Isaac at the end of the night! 

By His Stripes, We are Healed!

Heal Isaac, Heal!

4 years Post Transplant

Thankfully Isaac celebrated 4 years post cord blood transplant Wednesday. We are so blessed! Isaac is generally doing well with some milestones achieved and some mild set-backs. It is so crazy to look back at the beginning once in a while: http://www.caringbridge.org/visit/isaacsandoval/journal/index/0/0/asc
We won’t be able to do a fundraiser for CTSF and Isaac this fall (we are moving!), but are looking at February and a Bingo tournament currently. Please let us know if you have ideas or would like to help in anyway. We can’t wait to end this disease! Thank you all for your love and prayers!!!

   
     

Day + 1, 114: Happy Transplant Anniversary and Happy Birthday Party Isaac (Late Post)

Isaac had a wonderful transplant anniversary/birthday celebration!!! We really want to thank everyone who donated and those who were able to come out! That weekend brought our first rain in months, and lucky us it rained at night and then we had cooler days with nice big puffy clouds and sunshine. The park was a perfect size and set up. We had a fenced in athletic field behind us, a playground on one side and plenty of open grass. We also had a decent size tree from which to hang our Tiki Pinata which was quite a “Hit” and spilled toys and a little candy with appropriate coaxing.

Isaac wore his Halloween costume. He was dressed as a surfer. Originally he would’ve worn shorts, slippahs and an aloha shirt to go with his jeep and surfboard that fit so nicely on his wheelchair, but a surfer knows how to wear a hoodie and jeans on a cooler day!

Isaac had lots of friends come to help sing “Happy Birthday” and eat some cake but first they were treated to sound healing with Cat and her crystal bowls that resonated deep in your chest. Everyone could see which bowls Isaac liked over some of the other options. Isaac’s chiropractor Dr. Steve, his Ana Baniel Method therapist Margie Murnan and his teacher Mrs. Gay made it out too. We also got to visit with Gavin Marquez and his family for a little while too. Gavin is also bravely battling Tay-Sachs and he celebrated his 9th birthday this week! He is fighting the juvenile form of Tay-Sachs and his parents are hard at work keeping him strong! He looked so good and he seemed to enjoy some sound healing and aromatherapy too!

 

 

Thank you for your donations: Ageless and Beautiful, Flying Panther Tattoos, Dr. Steve Tullis, Margie Murnan, Bonny Rivera, Mr. and Mrs. Beasley, Mr. and Mrs. Camara, Stuart Ganz, secret cake maker and the Cure Tay-Sachs Foundation for helping us acquire autographed Charger’s memorabilia.

These donations and your generousity raised $3,000 towards Isaac’s therapy and healing expenses. We believe strongly in the mission of the Cure Tay-Sachs Foundation and sent 20% of Isaac’s celebration to them as we know one day, Tay-Sachs will not be a death sentence because the research was funded.

Winners:

Dan Fouts Helmet: Olivia

Philip Rivers Helmet: Foster Family

Dwight Freeney Football: Lorrie

Ageless and Beautiful Active Fx: Allison

Flying Panther Tattoos: Padaons

Dr. Steve Tullis: Allison

Bonny Rivera Quilt: Tino Rivera!!!

Coffee: Janet

Hawaiian Basket: Janet

Turtle: Denise

Fish: Liza

 

 

Isaac the surfer in his jeep.

Isaac the surfer in his jeep.

Grampy and Grammy Howard, Uncle Jon and Aunt Rita, Dad and Mommy, Isaac and Nicholas!

Grampy and Grammy Howard, Uncle Jon and Aunt Rita, Dad and Mommy, Isaac and Nicholas!

Crystal sound healing with Cat. Isaac loved the bowls and definitely indicated which ones he preferred!

Crystal sound healing with Cat. Isaac loved the bowls and definitely indicated which ones he preferred!

Raffle table!

Raffle table!

Gavin Marquez, just before his 9th birthday, fellow Tay-Sachs fighter! Dr. Eric Reed, fellow Tay-Sachs father, pediatrician and great human being. Jan and Ferd Marquez, devoted, sweet, powerful parents!

Gavin Marquez, just before his 9th birthday, fellow Tay-Sachs fighter! Dr. Eric Reed, fellow Tay-Sachs father, pediatrician and great human being. Jan and Ferd Marquez, devoted, sweet, powerful parents!

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Maddy and Liana getting some more fun out of Isaac's jeep.

Maddy and Liana getting some more fun out of Isaac’s jeep.

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Congratulations Olivia on winning the Dan Fouts autographed replica Charger's Helmet!

Congratulations Olivia on winning the Dan Fouts autographed replica Charger’s Helmet!

Congratulations Foster Family on winning the Philip River's autographed replica Charger's Football Helmet!

Congratulations Foster Family on winning the Philip River’s autographed replica Charger’s Football Helmet!

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Congratulations Padaons on winning the $300 Flying Panther Tattoos gift certificate!

Congratulations Padaons on winning the $300 Flying Panther Tattoos gift certificate!

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