5 years ago… and surgery update

Aw!!!!!!! My sweet little guy’s 2nd Birthday party and fundraiser. Thank you to everyone who follows our journey and supports Isaac in this fight!

With Isaac’s birthday falling the day after Thanksgiving this year, we aren’t planning a huge party, but instead I think we will plan a bash to celebrate his 7th year, month and day. So watch for a celebration beginning of June! And if you have little ways to commemorate his actual 7th Birthday in two weeks, please share!!!! I am absolutely over the moon that our miracle child keeps writing his own story and I’m a little sad not to have a big party. Plus, Isaac is having surgery on December 5th to remove the plates in his hips and lengthen his adductors, sooo there is that…

We just finished a round of updates with the doctors. Pleased to share that most doctors are happy with his health and that his brain MRI shows no further deterioration compared to 2 years ago. We know that cognitively he appears to be making some gains. It is amazing to see how aware he can be in moments of time. We also saw the spine doctor and had no further increase in his scoliosis compared to 3 months ago. This is important because rod placement has become a possible major surgery in Isaac’s future that we wish to avoid. We credit getting back to see Margie, Isaac’s Anat Baniel therapist, more massage and stretching and wearing a brace as tolerated with this win. The following films compare Isaac’s scoliosis without and with the brace as well the kyphosis without and with. The assistance with the kyphosis is significant!

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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 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! 
   
    
  

 

Isaac and accessibility 

Happy February everyone! We hope your January has been a beautiful start to the new year! Isaac has had a great start to his year and we appreciate the love and prayers keeping him happy and healthy!

Isaac has the best new teacher in our new school district. It’s like she was handpicked for him! She’s in love with him already and we adore her! She advocates for him, is teaching him to color and does age appropriate projects with him! Yay! We also are pretty excited about some of the other ancilliary staff he gets to work with through the district. School continues to be in the home due to his immune compromised status and volume of seizure activity. 

His new bathroom is about done, just waiting for a couple of parts and the shine to take on his new countertop. It is so accessible! It’s beautiful! But it looks like it might not be his main bathroom yet as his Daddy may just move right into knocking out the revisions to his attached bedroom! Oy!

We are soooo blessed to have been nominated by his social worker at Children’s to receive a new ramp. We have been so blessed to call this home and neighborhood our own, but knew it came with compromises. Inside: hardwood floors great for his rolling equipment. Outside: whacky, unsafe steps to get in and out of the front door. It was on our list, but wasn’t going to be able to be very high due to knowledge base and material expense (Robbie had already fixed more problems than we expected to contend with). The East County Posse http://www.eastcountyposse.com received Isaac’s nomination, quickly came out to meet and interview him and deemed it very necessary that he have safe access in and out of the home! I can breathe much easier now getting him in and out and not worrying about missing a step and falling over with him in my arms! We can not thank the volunteers and organization enough!

   
    
    
    
 

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!!!