We've had some pretty exciting blog posts in the past.
Approved for Zolgensma!
Ditching the feeding tube!
Buh-bye little pink helmet!
But this. This one is the most exciting update of 2021!
When Hayden was about six months old we learned about this highly sought after intensive therapy program called NAPA. Over the past couple years their highly coveted program has exploded across the US with locations in Boston, Austin, Denver, Los Angelas and most recently Chicago. We didn't register in time to claim a 2021 spot, so we've been on the waitlist for over a year.
We just recently completed our registration for 2022 dates and are awaiting final confirmation and date assignment. But in the meantime, we received the most amazing email notifying us that we'd been pulled from the waitlist and were being offered a 3 week intensive session next month! November 2021. SPOILER ALERT: we took the spot and will be headed to big state of Texas for most of the month of November for Hayden's first ever intensive!
Therapy is such a big deal for kids like Hayden with SMA. While she's had the miracle of a $2M treatment pumped through her veins, the best ongoing "treatment" for her is physical therapy. Continuing to strengthen, and build muscle. Allowing her body the opportunity to learn a new way to do something, capitalizing on the motor neurons still intact. This type of work is a marathon, not a sprint. It takes time. So much time. And repetition, tireless repetition. But it is paying off! We are seeing this girl do things we truly never thought imaginable. She is trailblazing for her fellow "type one" peers.
We're so overjoyed to be able to provide her with an opportunity like NAPA. But as you can imagine we're all making a few sacrifices in order to make this happen. Big brother is missing weeks of pre-school and regular time with friends and extended family. He'll be joining us in Austin because we can't imagine being away from him for 3 weeks! Hugh and I will be juggling working remotely, holding down the fort at the AirBNB and playing taxi driver getting Hay to her (3) hour-long sessions each day for 13 consecutive business days. And all of this to hopefully make it home in time for Thanksgiving dinner with our family.
If traveling with two very small children across the country for 3 weeks sounds overwhelming, well, we'd agree with you there. But we are so committed to giving Hayden every opportunity to build a solid foundation of strength and this opportunity is one we just can't pass up.
We've felt the support of our community from the beginning. We know now is no different. We would love to ask for some very specific prayers during our time in Texas. If you would be so kind to lift us up in these prayers:
Uneventful and safe travel for the duration of our trip (we'll be on the road a lot to and from NAPA).
For Hayden to adjust to the therapists at NAPA and to quickly build a bond with them, and naturally win them over with her charm.
For Hayden to withstand the intensive therapy and to be able to complete sessions as scheduled. That her endurance and stamina will sustain her.
For the specific type of physical therapy that she'll be doing to target her muscles in a new and exciting way and that she might experience an explosion of new skills.
For our family to disconnect and recharge. Making unforgettable memories as we rally around our girl, cheering her on!
We can't wait to update you after our return!
Thanks for being here with us. It means a lot.
Love,
the Nantzes
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