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.

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! 🙂

   
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 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. 🙂

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. 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!