I never claimed to be good at this blogging thing, which is probably why it's been the better part of a year since I've shared an update! And I've truly had this one in progress for about 3 months. Sheesh! But here we are.
In our last post, October 2021 we were prepping for our first DMI Intensive with NAPA in Austin, TX. But before we dive into that, let's rewind back to how we found Dynamic Movement Intervention and why it is such an amazing resource for Hayden.
If you've been following along for any amount of time then you remember Hayden received a one-time hour-long infusion of the most expensive drug on the planet at just 25 days old.
Zolgensma.
It comes with a price tag of $2.125M. Zolgensma is an SMN-enhancing therapy that works by replacing the function of the missing or nonworking SMN1 gene with a new, working copy of an SMN gene. This one-time treatment stopped the progression of Hayden's disease. But unfortunately, while we were desperately fighting for insurance approval, her little body was rapidly deteriorating.
Once her infusion was over, and we no longer felt like we were in total crisis mode we began implementing at-home PT and OT. Hayden wouldn't be where she is today without this team that she still sees weekly today.
In August of 2020 the third treatment for SMA was FDA approved, Evrysdi. This is a once daily oral medication that treats similarly to the first ever treatment for SMA, Spinraza that is administered via spinal tap quarterly. Evrysdi is designed to increase SMN protein levels in the Central Nervous System and throughout the body. This medication costs about $30k per month.
Initially we were a little hesitant to pursue this additional treatment. Hayden was continually making steady progress, and the thought of pumping her full of yet another drug while so young, with no long term data of the effects of these two treatments in combination with each other was an overwhelming decision to consider. Not to mention, we just kept hearing how challenging it was to get insurance approval, especially after your child had received Zolgensma.
It was something we prayed about for several months, trying to decide if we should pursue it. We eventually decided we'd give it a try, but with little expectation. We'd seek approval but if insurance denied it, we'd take that as a sign to let it go. Mind you, there are families that now, a couple years later, have been fighting tirelessly for this drug through multiple rounds of denials. But somehow it all came together and on December 15th 2021, Hayden took her first dose of Evrysdi. It was a family affair.
We have seen incredible gains since starting this second therapy. Stamina, endurance, and even more sass if that's possible. But even with this great addition, we wanted more. Through different SMA forums we learned about a very specialized physical therapy called Dynamic Movement Intervention. It's used to treat children with motor delay by improving automatic postural responses and promoting progress towards developmental milestones. The goal is to provoke a specified active motor response from Hayden through different exercises. It stimulates neuroplasticity to facilitate new neuronal connections.
In November of 2021 we packed up our family of four and flew to Austin Texas for our first DMI Intensive. Typically Intensives are 3 weeks in duration with the hours per day dependent on the program. Hayden did 3 hours of therapy each day during this stay. That's 45 hours of therapy during our short 3 week stay, the equivalent to almost a year of traditional therapy.
It was really an incredible experience, but it was also emotionally taxing. Think of it like this, you know what it feels like to work out for the first time when it's been a *really* long time since you've exercised... when you say things like "I have muscles that are sore that I didn't even know I had" ... now try experiencing that with an *almost* 2 year old.
Frequently we get asked if she's in pain during these intensives. And the answer is no more pain than when you're working muscles more than they're used to, or using muscles in a different way. So, as you can imagine, she can get frustrated, tired, annoyed, have a bad day etc. Which is completely understandable. But on the flip side she is the most resilient kid. And while it's so hard to put into words the incredible, miracle-type change we've seen in her since starting DMI, we do our absolute best to listen to Hayden, read her body language, understand when to push her and when to back off and give her a break.
Hayden graduated from her first NAPA Intensive with flying colors and we left with very full hearts for this special group of therapists, not to mention we had caught the bug for DMI and knew we had to continue providing Hayden with this resource.
Hayden's 2nd Birthday
As many parents do, we wanted to celebrate Hayden's First Birthday in a big way. A first birthday is such a celebration, not only for the little one, but for the parents. We did it. We survived. We all made it. And I'll be the first to confess that Hayden's first year of life looked absolutely nothing like her older brothers, and nothing we could have prepared for, and honestly wasn't the joy-filled year that most parents have. In February of 2021 Hugh and I ate in a restaurant for the first time in over a year. And while we were adjusting to Hayden's diagnosis and meeting her needs, we weren't quite ready to throw a big party, inviting lots of people and exposing Hayden unnecisarily. All we knew about SMA + Covid was that we had no idea how her weaker respiratory system would respond. The longer we could keep her isolated, in a bubble, growing stronger, with minimal illness and set-backs, the better.
So we opted to keep the first birthday simple with immediate family only, celebrating a day that initially we were told would not come. We celebrated a life that we are so grateful for. And a little girl that has changed us, from the inside out.
Naturally... we blew it up big for her SECOND Birthday!
Climb Intensive Pediatric Therapy
While we were in Texas wrapping up our first Intensive at NAPA we were feverishly searching for this type of therapy closer to home and more accessible. We snagged our spot at NAPA off a waitlist we had been on for almost a year. Ideally, we'd have Hayden attend three 3-week intensives a year. Most DMI therapists don't recommend more than quarterly because following an intensive, the body needs times to recover, heal, and put into practice what it's just learned.
We found Climb Intensive Pediatric Therapy in Spring Hill Tennessee, a new clinic that just opened their doors earlier this year. If you're reading this and searching for DMI for your little one I highly recommend looking into Cimb. Their story is incredible and their passion for helping kids and supporting families like ours is truly unmatched.
https://www.climbintensive.com
Climb allowed us to do a one-week intensive in March of this year. We were eager to see their facility and meet their team. Needless to say we were sold rather quickly and returned for a 2-week intensive just over the Summer.
3rd Annual Here for Hayden Event
In May of this year we had the opportunity to host our 3rd Annual H4H Walk where we raised money for an organization near and dear to our hearts, CureSMA.
Our little event has grown year over year and we're so grateful for the support of our community as we continue to raise money to fund research so someday we can cure Spinal Muscular Atrophy.
We had some incredible donations for our raffle, along with sales from our H4H swag and overall monetary donations we were able to donate $22,207 to CureSMA this year!
2022 has been a year full of growth and change for our family. Both of which can be scary at times but we're grateful for the opportunities this year has afforded us and look forward to see what next year has in store.
Love,
the Nantzes
Hugh, Logan, Avery, + Hayden
For more daily updates follow us on Instagram at @here.for.hayden
Comments