Welp, we made it home after a month at UNC. It's good to be back in Elkin. Like I mentioned on Facebook it feels like "Phase 1" is complete. Her old rod is gone, her Halo is attached, she is starting to straighten up, and we're home. Now we get to figure out "Phase 2".
Natalie was sent home with her Halo along with a wheelchair and a walker. She was also given an adjustable tilt hospital bed with a custom traction attachment made by our new friend Chris Bryant. Most kids that have the Halo get straightened up before they leave the hospital and then have a follow up surgery at the end of their hospital stay. Natalie's spinal curves are so extreme her doctor's thought it would be best if we go home while her spine continues to straighten. They initially thought that she would straighten in about 6 weeks and then they'd develop a plan from there. However, the doctor thinks she will have several months of straightening before a new surgical plan can be made. There really is no way to forecast how long her back will take to straighten but for now we're going with the generic "months". It may be sooner but it is unlikely. We also don't have many indicators of what type of surgery she will have at the end of her traction. There could be growth rods, fusions, or something that we've never heard of but we have zero inclination as to which procedure will best suit Natalie. Once we get to that point we'll be sure to share the plan. We're used to waiting with Natalie and this won't be any different. Until then we'll keep on doing "Phase 2".
So what is "Phase 2"? It's simply waiting and trying to give both of our kiddos as much normalcy as possible.
We've figured out that Natalie's wheelchair can be transported in the back of our Subaru. It's not pretty but it gets the job done. We'll be able to take her to school, to Isaiah's football games, and pretty much anywhere else in town. For now, it works and that helps a lot.
Natalie will be starting half days at school on Monday. She'll do half days until she builds up some endurance and shows that she can physically handle a full day. Principal Colbert and her teachers (Mrs. White, Mrs. Garris, Mrs. Simmons, and others) have been unbelievably gracious to Natalie through this whole process. Mrs. Garris is out on maternity leave but Natalie is so excited for her and her new sweet baby girl. Joanna and I went by Elkin Elementary yesterday to show all of her teachers how to use all of her equipment and they just jumped right in learning. We are completely confident that they will carefully transition her as needed and will make sure she is safe at school. It's refreshing to know that Elkin Elementary has amazing educators that are also loving Moms and Dads that care so much for their students. Natalie is very excited to get back to school and so are we.
Also in the next week or so we'll start visiting church again. FBC Elkin, Elkin Presbyterian, and the Methodist Church here in town have shown us so much love over the last few weeks. They have showered Natalie with encouragement, cards, notes, and treats that have made the hospital so much easier for all of us. People can learn so many lessons from these folks on how to care for their neighbors. We were practically strangers to them yet they chose to love on us and treat us as their own. We can't wait to see everyone again from all of these congregations and figure out how we can plug in and serve along side you.
We'll also (hopefully) start building the treehouse that we've been promising Isaiah. I think the weekends will be nice for getting out in the yard and working on it as a family. He already has his design ready.
Joanna will continue to work from home and i'll be starting back as a substitute teacher in Wilkes County. Thankfully this gives us flexibility during "Phase 2".
We will head back to Chapel Hill every week to two to get x-rays for Natalie and to meet with other departments within her team. We don't expect many significant changes for quite a while so I probably won't be updating the blog unless something important comes up. But we will be posting progress pictures and sending updates via Facebook/Instagram.
I've attached a picture of Natalie's most updated x-ray. On the right is her pre-op x-ray and the one on the left is Monday 9/23. Initially she had a 148 degree curve and now it is at 101. You can see some major changes in her back, chest, and neck. That's certainly progress!
Hope to see everyone soon!
We love you,
Lyle, Joanna, Isaiah, and Natalie
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