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! 

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 +1,334 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. We had even 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 😉

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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!