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!

Isaac and Hip Surgery

Thank you prayer warriors for covering Isaac and our family in prayer and belief for quick healing and a very successful surgery. Today it was posted on his MyChart exactly what he is having (I’ve been calling it hip construction): Acetabuloplasty, Capsulorrhaphy Hip, Lengthening Adductor Open, Lengthening Distal Hamstring, Varus Derotational Osteomy Hip, Spica Cast Application. 

There is a reason they will be in the OR for hours. 

This is a quality of life surgery. We believe in giving Isaac the best as long as we can. We want him to enjoy being up and about, not fade away in a hospital bed if we can help it. Currently he has major hip dysplasia which if left alone will deteriorate into arthritis, pain and inability to use his standing frame or sit in wheelchairs/other seats. It could become so bad that he would need a “salvage operation” in order to keep up with his bottom care. That isn’t what he wants. He has told us in his smiles in the breeze, and joy in listening to the children at the park, and perked up look at the beach that he wants to get out and about forever and always! He likes to travel. Like going to Orlando last month for our annual NTSAD conference and some Disney fun (which I will share pictures of here. I promise!). 

We check in at 5:30 am and surgery begins at 7:30 am. Please Thank God for the technology and intelligent medical team that will care for Isaac and fix his hips. Thank God for Isaac’s strong mind and brain that will remain free of seizure activity and clear the anesthesia in a brisk manner. Thank our Lord for strong lungs that will tolerate a number of hours under anesthesia and intubated unphased. Thank Jesus great pain control and quick and proper healing of Isaac’s hips and a reversal in his current scoliosis. All prayers, healing energy, good vibes and hugs and kisses much appreciated! 
   
    
  

 

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! šŸ™‚

   
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!

Family Visit Recap in picturesĀ 

We visited Grampy and Grammy in Tucson to celebrate their retirements mid-June. 

Hopefully that means lots more of this: 

  

Isaac appears to be blowing a kiss to Grammy here: 

  

After we got home and settled, GMa and GPa from Hawai’i were able to visit after having to delay last month due to both having bronchitis. We visited their favorite Old Town restaurant Coyote Cafe: 

   

 

GMa was just being funny here?: 

  

And a little later in the week GMa gave Isaac a trim while he stood in his stander. He did a great job of trying to hold his head up for her! 

   
 
We then celebrated Robbie’s (Isaac’s Daddy!) birthday with a toast (and our fun neighbors):

   
 

We had some cake too, but that missed picture time. šŸ™‚

Two days later my Ate Mhener and Uncle Marc came to town from Tucson and while we missed a group photo, Isaac enjoyed our meal out together. Complete with Daddy trying to teach him ‘normal boy activities’ like sticking crayons in his nose. Haha

   
 

We are so blessed to have such a wonderful and loving family!

Day +1,334 Spring and back to Busy!

Hello all and thank you for your prayers! As you may have seen on Facebook, Winter seemed to last forever and Isaac was sick continuously from the day after his birthday in November until April and then he had another cold or two after that! We have finally entered late spring!

Isaac finished his depakote wean last Sunday. Depakote was another anti-seizure medication that he tried, had no effect, or so little as to be very unsure. WeĀ had evenĀ increased the dose again after labs showed him to be less than sufficient, got to sufficient on labs without a noticeable decrease in seizures and so we took it off! It hurts me and overjoys me to see him smiling and even a couple of chuckles again this week. It hurts because the depakote went on so slowly that the sedation and numbing effect was not as glaringly obvious as some of the other seizure medications have been. Isaac was still have alert periods while on the full dose. But take it off and he’s suddenly engaged. He’s smiling again and we realized we were falling back down to a couple of half smiles a week before weaning. Pharmaceutical anti-seizure medications are so hard on the brain and body. I hate Tay-Sachs and the related seizure disorders these sweet kids suffer.

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So Sunday was Isaac’s last dose of depakote, Monday Isaac had his school teacher in the morning and then Isaac was fitted for a gait trainer in the evening. We are hoping for delivery within 2-3 months. It is going to be so amazing to teach Isaac to get around for himself!

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Tuesday Isaac had his ankle-foot orthotics (AFOs) adjusted, school teacher, Anat Baniel Instructor Margie who helped relax his spine that has been slowly contorting into scoliosis, chiropractor Dr. Steve who could feel a difference in Isaac’s nervous system (Isaac had less than 4 seizures for the day at that point!)

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and than Miss Emma. His newest addition to the team and destined to be a favorite. She did 45 minutes of music therapy with him and during that time she encourage me to sing to him because of the endorphins/serotonin released by a child’s brain in response to his mother’s voice. Isaac thought it was funny and promptly began to smile and then chuckle. Music to my ears!!! I didn’t care that he was laughing at me šŸ˜‰

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We hope that you all are well and promise to update sooner this time. We still have adventures undocumented to share here with you!

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 theĀ 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 sentenceĀ because theĀ 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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