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!
Since we last posted, we learned that the new brace is not helping Havyn. That means that the time for surgery has come. We’ve known that it would happen eventually. All of the casting and bracing was just to prolong the inevitable surgery, giving her body time to grow and be a be more prepared for treatment.
A couple weeks back we went to St. Louis to meet with Dr. Luhmann. He’s an orthopedic surgeon and part of the NF-1 clinic there. He was the first to suggest casting for Havyn many years ago. After meeting with him again, we are confident in his approach, his experience, and believe that she will be in good hands.
We learned something new on this trip. We’ve been talking about growing rods for several years but never really understood what Dr. Luhmann shared with us. “The day after we place the rods is as straight as her spine will get.” We were wrongly assuming that the growing rods helped her spine to grow more straight as she aged. That’s not true. They are there simply to try to attempt to hold her as straight as they got her in surgery. Because of that, it’s important to do whatever you can to get the spine ready for surgery.
In light of that, he has suggested a procedure called Halo Gravity Traction. On May 7 (also Havyn’s birthday), she’ll have a halo attached to her head. This is done under anesthesia. They’ll use about six pins to secure the metal ring to her skull. Then, they’ll use a pulley and some weights to provide traction, lifting up on her head. They’ll start with just a few pounds, gradually increasing the weight. This will reduce the effects of gravity, hopefully straightening her curve and loosening the soft tissues.
It’s a very scary looking procedure but actually quite remarkable. If you are interested in learning more, we’ve found this video informative and reassuring. The plan is for her to spend four weeks in traction followed by surgery on June 4 to place growing rods. More to come on that in future posts.
It might seem crazy to move the whole family, but it just feels right to us. Tammy and I have always tried to do as much of Havyn’s medical stuff together as we can. We make a good team. And the kids really want to rally around their sis. Since we’ve been homeschooling them this year, we can just take that show on the road. I (Steve) am able to do a good chunk of my work remotely, so there’s really nothing holding us back. It will be an adventure and a lasting memory for our family.
We leave in just a few days. Havyn has several pre-op appointments as well as an MRI scheduled in the week before her halo placement. We really value your prayers and encouragement. I know that Havyn will appreciate cards and phone calls. We’ll post an address once we have one to share.
And a special thanks to those who are taking care of our lawn, caring for our pets, housesitting, etc. We are beyond blessed to have you on our team!