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.

Auction Items for Fundraiser

Bling Basket will include a Bottle of Wine

Want to get a jump on many of the auction items available at Isaac’s Fundraiser for Cure Tay-Sachs Foundation? Take a look, send Lorelei a private message regarding your bid! Many of these will go for steals, all have been donated with intentions of raising funds for a Cure! Thank you! 😀

 

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!

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!