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!
18 Replies to “So much more to say…”
Wow & wow! So, now I know why I was praying for your family the other day! God just brought y’all to mind & I started praying! Prayers will continue.
Wow. God placed you all on my mind this morning a couple of hours before I saw this post… He is an amazing God. Praying you through this and trusting Him to guide and protect you all !!!
It was great to hear an update, I’ll be praying for you all! How wonderful that you’ll be able to be there as a family and support each other. Much love!
The O’Neals are praying!! You and Tammy do make an excellent team! God has always been so faithful and I know He will be on this journey too!! We love all of you so much!!!
So odd that I was just thinking about you all yesterday and the fact that I had not seen a post in a while! Maybe because I think I spotted you at church Thursday night (hard to tell with
mask on)! I will be praying for your trip, relocation and for the procedure and surgery! May the doctors be wise in their decisions and may God surround you with peace and comfort!
Continued prayers for all….
Our Sunday school class, Crossroads, prayed for Havyn and your family this morning. We’d love to send cards or anything you all have need of.
We’ll also pray for her medical team.
May God bless all of you.
Holy Moly! All the Peays will be praying for Havyn, especially, but for ALL of you as well! Praying for peace & calm, and of course, the BEST outcome with this procedure! You all are the poster family for faith in God & being an encouragement to everyone in spite of what’s going on in YOUR lives (which has been A LOT)! We love you so much!! All the Peays ♥
All our prayers for your brave family in this new park of you adventure. Prayers of strength, healing, comfort, peace and joy for all of you. Jim and Patty Barnes
Prayers lifted up for all of you. PLEASE let us know when you get settled. Let us know how we can bless your journey while you are there. What restaurants will be close by? (So we can send gift cards) – what grocery stores will you be frequenting (again so we can send gift cards). You and your family are a blessing to so many – we want to be able to bless you as well. Love you all.
Praying for your family as you all prepare for a new home for the next 6 weeks. I can’t wait to see you all again!
We’ll be praying too! Thank you for Havyn’s update and for including the video. God has gone before your family…He has worked all things for all of you to go together. Praying for God’s care and we know Havyn will be a blessing to many.!
I have placed Havyn’s prayer card in front of my kitchen chair as our daily reminder. The Lord be your strength, fortress and refuge. We will plead to Him for Havyn’s cause as the weeks build towards surgery.
Lots of love and Prayers to the Young family! We will all be thinking of you as you take this journey with Havyn. Thank you for the update and looking forward to hearing from you all once you’ve settled in.
Praying for Havyn and her supporting family. Look forward to knowing where to send cards. You have made the BEST decision to move everyone there for this time.
Praying for everyone especially Miss Havyn!! You all are amazing parents and I have no doubt that God is standing right next to you all during this time. Your family has been such a blessing to us during our NF journey! Can’t wait to see Gods work in Havyn.
Love you big. Praying big.
I often thought these past few years, (since our India trip) how lucky one would be to be Steve Young’s child! Fun, funny, a kid guy, a family man deeply in love with his wife ? So it goes without saying Havyn is in hands that Our Lord guides each day.
God, surround this family- be beside her surgeon- steady his hands and his ❤️ heart for our brave girl.