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 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!


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:
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 1,078 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! 😉 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.

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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