So much to say…

It’s been more that a year since we last posted an update. Truly (and thankfully) it’s been a pretty quiet year medically. There have been plenty of appointments and scans but everything has been pretty routine.

That was until about few weeks ago, anyway. In a routine check on Havyn’s scoliosis, we visited with Dr. Puno for x-rays. Back in October, her curve measured about 64° in her brace. That’s a big-time curve but it had been holding steady for about 12 months. But the x-ray now shows that her curve has progressed to about 76° which is a BIG change for just a few months.

Scan in brace – Feb 2021

At first glance this is bad news. All along we’ve known that back surgery is in her future. The goal of bracing has been to stop or at least really slow down the progression of her curve. BUT… on the up-side, 76° is still lower than her last out-of-brace x-ray (from last June) when her curve measure 84°.

She’s been in the same brace for well over a year. For a lot of reasons, the team thinks that it’s possible that her brace just isn’t effective anymore and maybe a new brace will be do a better job.

Scan with traction

So we went back in for more x-rays, specifically to get an out-of-brace measurement. We were (pleasantly) shocked to see that her curve out of the brace is 85° which is essentially unchanged from last June’s scan. Dr. Puno also wanted to try a scan with some traction. So you can see my hands here holding her neck/head. What you can’t see are Dr. Puno’s hands pulling on her ankles. Havyn grew an inch or two for a brief moment as this scan was taken.

Unfortunately, as you can see, Havyn’s spine did not correct too much. Dr. Puno was worried that her spine has gotten more rigid which means that a new brace probably wouldn’t help too much. But after talking more with the orthotist (Hannah the awesome brace maker), the decision was made to try a new brace – and a completely different style/technology than her previous one.

So about 10 days ago we made the treacherous drive (a big winter storm came through the night before) for a 6am appointment at Norton Children’s Hospital. Havyn was sedated and the team was able to put her under traction. Through a lot of manipulation they were able to get her curve down to 45°! They took a 3D scan of her to use for forming a new brace. Havyn woke up from the procedure pretty grumpy and understandably in a good deal of pain. Can you even imagine!?

Havyn in her new brace

Today Havyn got her new brace. It was a 4 hour procedure to make all of the necessary adjustments. It’s a much more complicated brace (as you can see) and we are hopeful that it will help. Check out those unicorns and ice cream cones! If her spine is able to get some good correction then we’ll be able to push off surgery. Once we start the surgery route, she’ll need surgery every 3-4 months until she’s about 13 at which time she’ll have a final fusion. Making the decision to continue bracing over the last 18 months has already saved her 5-6 surgeries. We’re hopeful to save many more!

Tammy will take Havyn down for an in-brace x-ray tomorrow to see if this new brace is helping. I don’t know how much correction will be “enough” but we’re hoping for a LOW number!

We’re continuing to pray for wisdom and healing and invite you to join us! She is a very unique case and a special little girl. The surgeons we’ve met with have vastly differing opinions on the timing of the next steps so we appreciate your prayers!

16 Replies to “So much to say…”

  1. I’m praying for Havyn. She’s a gorgeous girl and she’s starting to look so much older♥️

  2. I love you and am praying for this new brace (with its magical unicorns and ice cream cones) to do what it’s meant to do. Hugs from Aunt G.

  3. Well it doesn’t go unnoticed by me that a pic of Havyn came up in my FB memories yesterday. God is sending reminders to wake up her prayer team and start covering her, parents, and medical team in prayer again with fervent prayer. God says it will avail much.. I believe!

  4. Your family is in my prayers. So good to cancel out so many surgeries….but the best part is her precious smile. Please give her a hug from Miss Debbie!

  5. Oh my word! God has been gracious in holding off all those surgeries. He can do more than that! Praying for you sweet girl! ❤️

  6. We will add Havyn on our morning prayer list!
    She is so special and unique in so many ways! She is even more lucky to have you and a Tammy as her parents ❤️

  7. Dear, sweet Havyn…she’s been through so much. My heart is with her and with you all. Very glad to hear that through the bracing the surgeries are being postponed. Love you all so much, and you are in my thoughts. Much love, Aunt Rani

  8. Interceding, spirit-led prayer tonight over her and you guys! For God calls all things for good!! Thank you for your energy in this post and for who you guys are every day. Love you all so much ❤

  9. Praying for yall! I had my spinal fusion surgery at age 13, after a few years of bracing, with Dr. Puno, so if Havyn ever wants a scoliosis buddy to talk to – I’m here!

  10. Glad you are back. Praying for you as you navigate the course of treatment and conflicting medical advise.

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