Havyn is just over a week into her stay here at Shriner’s. We’ve posted tons of photos to Facebook in the last couple weeks. If you haven’t followed us there, feel free to swing on over to for minute-by-minute updates.
I’ll start with the big update first. She just had her one week scans yesterday. I’ll post photos below. I think she’s looking incredible! She’s not even at full traction weight yet and already there are signs of progress. Look at how straight her upper curve and neck are! While they didn’t give us any official measurements, it also looks like her main curve has gotten somewhat better. It’s GREAT to see this progress and confirms that all the pain and difficulty is worth it.
The last week has certainly been tough, but she’s doing so well now. The first couple days were very difficult. Between the pain and the medication, Havyn was not herself at all. She was grumpy and mean. She hated the halo and just wanted to go home. It’s a different story now. She is fun, silly, and joyful. She has been playing lots of games and keeping everyone entertained.
She’s also been CRUSHING IT on the treadmill. She walked two miles yesterday and at a pretty brisk pace. It’s great to see that stamina in her. She’s normally the first in our family to tire out and I think she’s got more drive than any of us right now! It might have something to do with the fact that she’s now about 25% lighter than normal. I’d be feeling pretty good too!
Thanks as always for the encouragement and prayers. We have been overwhelmed by it all. There is no way we can say “thank you” enough!
ATTN: Havyn Young Shriners Inpatient 4400 Clayton Ave St. Louis, MO 63110
If you’d like to send a birthday card or get-well card I know she’d love to get the mail! 🙂 If you’d like to send a gift would you consider waiting until we’re back home? I think we already have more stuff than we can fit in the van going back! 😬
First of all… for regular, short updates and photos please join our private Facebook group! (https://www.facebook.com/groups/youngsbythearch) We’ll continue to occasionally post to this blog, specifically with lengthier detailed updates. But for the day-to-day adventures, follow us over there. We’d love to have you follow Havyn and her siblings! A wild adventure awaits!
Now to the update… We rolled into St. Louis last night and are getting settled. Havyn spent all day at the hospital today in a slew (fun word) of appointments. Starting at 8am, in close to particular order:
Wow. The last couple weeks have been a whirlwind and we’re getting ready for sweet Havyn to go through a pretty tough road. We’re hopeful, though, that she gets some good correction for her spine. Here’s the super-fast version: Havyn will need to be in St. Louis for almost 6 weeks for a traction procedure and back surgery. We’ve decided to temporarily relocate the whole family there and we leave next week! Want more details? Read on!
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!
Short version: Havyn had her first followup after she started bracing last year. The X-Ray showed that her scoliosis is stable, holding at 65 degrees at the worst part of her curve. It hasn’t progressed since she’s been wearing the brace. This is GREAT news! This means that she won’t need surgery right now. She’ll repeat imagining every four months and we hope to keep getting the same news!
Havyn got her new brace(s) yesterday. She is getting slightly more correction in the brace made from the scanning CAD software than the one made from a conventional fiberglass mold. So that’s the one she’s going to wear.
With the brace on, her main curve is reduced to about 66° which doesn’t seem like as much as Dr. Puno was hoping for but he is happy that she’s getting some correction. There is hope that the longer she wears the brace (and the tighter she’ll tolerate us making it) the better correction she can get.
Havyn’s initial reaction to the brace was so positive. She was excited to see it and try it on. She was so happy with the colors! She can’t wait to show it to you!
Really the pictures tell the story… see below. Things went very well this morning. Dr. Puno and his team did a great job fitting Havyn for her new brace. She had to be sedated, which she always does so well with. We’re so proud of how calm she was this morning and just took things like a champ.
After she was sedated, the team applied manual traction on her spine and pushed and pulled to get her as straight as possible. One person grabs her by the neck and pulls upward on her spine while others push on other parts to twist and force her backbone into alignment. Look at the photos comparing her natural curve and the correction they got under traction… amazing! Continue reading “Update on brace molding”
We’re sitting downtown waiting for Havyn to be rolled back so that she can be sedated and fitted for her new brace. After so many prayers and the combined wisdom of our incredible community, we’ve decided to proceed with bracing. Within a week or two she should be in the new brace. We’ll see how it fits her and make our final decision whether we’re going to postpone the December 2nd surgery.
Don’t have time to read the doctoral dissertation below? Skip to the end for the one-paragraph version!
Let me bring you up to speed quickly. Havyn has a severe curve in her spine. You wouldn’t really know it looking at her, but her x-ray tells a different story. The most recent scans showed her curve at 77°. While NF-1 is referred to as a tumor disorder, its impacts go far beyond tumors. There is really no predicting exactly what symptoms a patient will have. You just have to keep a close eye on things and attack whatever problems arise. About 10% of people with NF-1 develop scoliosis, with varying degrees of severity. Continue reading “A new option… praying for wisdom!”