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.
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.
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!?
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!