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!!!

   
     

Family Visit Recap in pictures 

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. ūüôā

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 +1,349 (Normal) Childhood Milestone Achieved! 

Guess who visited Isaac last night? Yes, we went to see his grandparents in Arizona a week and a half ago for Grampy’s well deserved retirement… Yes GMa and GPa from Hawai’i came to visit this last Thursday and went home yesterday…. Yes, sweet Jan and Audrey Bella, Gavin Marquez’ Mom and Sister came to visit in the early evening… Yes Uncle Marc and Ate Mhener came to town and we had dinner together… Out of guesses? The Tooth Fairy!!!!!! Can you believe it? 

Isaac’s bottom front teeth have become progressively loose since last September. But he is only 4 1/2 now!? So when this bottom right tooth became so loose that I could bend it almost horizontally forward and he had a bit of blood on his toothbrush and pillow case, the nervous first time Mommy in me popped out! I called the Dentist! What if he aspirated the tooth? I don’t know if it’s actually ready and should I do anything about it? Could be tomorrow or a month before it falls out on its own? Of course the receptionist reminded me that normally its best for teeth to fall out on their own. But I let her know Isaac has special circumstances that do not necessarily allow him to notify me that a tooth is rolling around in his mouth. Particularly worrying if it happened during a seizure! Dr. Job is lovely and had us come in at our earliest convenience.  

  
We got Isaac’s first dental X-ray to confirm that it was actually time to start loosing baby teeth. 


We confirmed that he is ‘Dentally Advanced’ (same term used more than two years ago when I was concerned he still had so much gum tissue around his back molars, but the dentist was surprised they were already out!). 

  
Woah! Look at all those adult teeth!!!

  

Dr. Job gently plucked Isaac’s first tooth from his mouth and gave me instructions on how to take care of the next teeth as they become ready. 

 

Isaac really didn’t mind. He took a great nap right after!

  
And the tooth fairy paid him a visit overnight! I think I was so excited about this milestone that I had the whole office excited too! He might be one of their youngest to lose a first baby tooth due to adult teeth poking their way through, and he is certainly one of their cutest and most cooperative! 

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 ūüėČ

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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!

May 2nd. Is Winter over yet?

A quick update and I hope to come back and fill in more details. Isaac had a rough winter with respiratory junk almost continually. It started immediately after his birthday and had just cleared up before the NTSAD family conference in Washington DC. He started with a cough and sinus stuff a week after conference and was quickly on O2 and making people nervous with how lethargic and hoarse and a bit weak his cough became, and then he quickly got over it.

We continue to work on the seizures. In between illness Isaac is happy, is a bit more mobile… Stretches differently than he has in the past. Utilizing his whole body. It is awesome to watch. I also think he makes a few more noises. Started music therapy last week. I can’t wait to see how he enjoys that!

Thank you again for all of your prayers and we hope you all are well!

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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Day +1,105: 1 month till Isaac’s Birthday and Just 9 days till his celebration!

We are very excited to have added some new raffle items for Isaac’s celebration. Our goal is to raise $5,000 towards Isaac’s therapy costs and to be able to send a donation to the Cure Tay-Sachs Foundation to help end this terrible disease! Please help us? You can purchase raffle tickets in advance or at the Celebration. Please feel free to call or text 760 716 – 0601.

Isaac Celebration 2014

Celebration 2014 Raffle List

Celebration 2014 ActiveFx

Quilt for Raffle

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+ Day 1,078 Doctors, doctors and photos!

Isaac will celebrate 3 years post cord blood transplant on October 14th. This is another huge milestone and definitely like a birthday, worth celebrating. Before we celebrate though, anniversaries of this sort come with doctor visits.

We visited Dr. Anderson, his hem/onc/transplant doctor. Like 6 months ago, Dr. Anderson could only say that Isaac looks better than he’s ever seen him. Isaac likes staying away from doctors! ūüėČ Dr. Anderson described for his nurse practitioner-in-training how he was nervous to wean Isaac from his anti-rejection drugs/steroids, because his skin GVHD (graft versus host disease) had looked pretty bad previously. But Isaac continued to improve as doses were lowered. I was able to share that of the transplant kids we met at our last NTSAD conference, Isaac was the only one not on drugs. We are pretty proud of our Rock Star. His lab results were pretty good. Most within normal ranges. White blood cell count a little high. IgG still a little low, but not low enough to convince the good doctor to give him an infusion. The doctor was unable to give me a good reason as to why Isaac has had so many respiratory viruses and UTI’s the last year, plus C-Diff. Prophylactic Bactrim might be a possibility in Isaac’s future. Possibly after testing post-void residuals. I of course asked what we would do with results of a post-void residual and he kind of laughed and said “nothing really”, as I thought. As part of the labs for transplant anniversaries, they generally do studies that show if he is still fully donor DNA as we expect him to be, the results of which are not in yet, and we also test his Tay-Sachs enzyme level. Well this year they sent off a “Tay-Sachs test”. I thought it was odd that they were able to draw this one in the afternoon, as usually it is a send out to the east coast. Yeah, it wasn’t the right one. This one was just the Yes or No gene test. Good news folks: Isaac doesn’t have Tay-Sachs!¬†¬†¬†¬†¬† This is amusing as of course this whole journey is because of that terrible genetic disease that the scientific community has known about and understood for decades and yet still haven’t figured out how to fully prevent it’s occurrence nor gently treat it and eliminate it when a child is born with it. Isaac’s friends are still dying of this disease and Isaac is still disabled due to this disease. So I hope this one test doesn’t give any ignorant people, particularly in the insurance business, the wrong idea!

We went over to see Dr. Gold after we finished in the hem/onc clinic. Isaac started depakene a month ago,¬† which along with his currently supplements including cannabidiol extract, seeing his wonderful chiropractor Dr. Steve Tullis and diffusing Frankincense seems to be reducing seizure activity. Isaac had half his normal seizures yesterday so we are headed in the right direction. He needs to get a blood draw to check his level, after which we will increase, decrease or keep the same accordingly. He does have a bit of a tremor which can be very level dependent, so we will continue to monitor. If the depakene is helping, awesome, if not, we will take it off and try something else. We have been increasing his cannabidiol, my biggest concern at the moment is affordability since it still isn’t covered under insurance.

After the doctors, Isaac had his hour with Margie from Lessons in Motion. Isaac has gotten more out of his 3 sessions a month with her than he did with multiple OT and PT visits weekly. While PT and OT kept him loose and entertained, with Margie he has started really connecting to his body again. He bridges his hips to help with diaper changes. This is huge! Today, she worked on that low back that he keeps so stiff and he was able to start arching it to correlate with bending arms and legs. Building blocks to crawling motions! He also looked so much better in side sitting than last session. Last session he was still stiff and kept bringing that right knee in the air no matter which side he was sitting on. This time he looked comfortable, rooted in his pelvis and legs and yet so much taller! Amazing!

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Last night the beautiful, inside and out, Kristen Vincent took our annual photos. We will use them for our Christmas cards as we have in years past, so here is just a peek.

View More: http://kristenvincentphotography.pass.us/sandoval1

As you can see, we are now officially using Isaac’s own website. In the coming weeks I will update on what we’ve been up to this last year and bring over his old blog posts. I was browsing them briefly double checking his transplant date, and reading them brings that hospital experience rushing back. I don’t wish that on anyone. While you are saying your prayers, Thanking God for what’s good in your life, praying for strength, courage and guidance, and praying for healing for all those in need, including our sweet Isaac, please pray for those families at their child’s hospital bedside, not sure if they will ever see their child smile again, much less leave the hospital. It is a lonely, scary, dark place to be.

By His Stripes, We Are Healed!

Heal Isaac Heal