

Session Thirty-Two: Making the Crooked Places Straight, Part Thirteen: The Final Episode for Scoliosis Awareness Month
Wrapping up a story is an art which Mommy hasn’t quite mastered. Our daughter’s scoliosis journey isn’t over, so I truly can’t wrap it up into a tidy bow, but I will attempt to share a written highlight reel.
Our daughter’s road to recovery from the growing rods surgery was paved with blessings. She received many cards and gifts to go along with the bountiful prayers. Once the Steri-strips began to fall off, we were able to get a good look at her healing-beautifully incision, and of her newly shaped back. The before and after views of her spine were astonishing! We were also surprised to see the changes in her belly. Our daughter also has Lordosis, which pushed her stomach out considerably. The rods also helped to correct that curvature.
However, the greatest benefit of the surgery was the space created for her other organs, most notably her lungs. She was able to take deeper breaths, and her work of breathing was tremendously improved. We had discussed a plan with her pulmonologist prior to the surgery that once she was healed, we would begin weaning our daughter from daytime dependence on the ventilator. We had already weaned the pressure settings considerably in the year leading up to the surgery, so the next step was to spend some time “sprinting” off the vent.
It was at her ninth birthday party when we set the timer for twenty minutes, hooked her up to the pulse-oximeter to watch her oxygen saturation, and let our girl unwrap presents without the ventilator. It was a tremendous moment that we were elated to share with our family gathered to celebrate our daughter’s life. Her O2 sats never budged. Our daughter was reluctant for us to hook her back up to the ventilator, assuring us that she was fine. But we didn’t want to push it too far on day one.
For several years, our girl would pull herself free from the vent circuit and run around, but we never let her go more than five or so minutes. With the successful trial run, we continued to allow our trachie to sprint off the vent several times a day, gradually increasing the time. It wasn’t any time at all before she went for an hour at a time, then two, then three hours.
Our daughter has been ventilator dependent from the moment she was born. We can’t express the joy it brings to us as we watch her run around playing with her sisters and doing typical little girl things without someone walking directly behind her with the ventilator. And what’s even more beautiful is to see everyone else’s reaction to seeing our daughter off the ventilator. At Mass, she is eager to walk up to the altar with the other little kids to put her offering in the basket. She comes back to the pew with the biggest smile on her face, melting every heart she passes. I can’t tell you how many people have commented on how happy they are to see her free from the vent. Now she is free to play uninhibited with her friends at recess and during this season of Challenger League Baseball, she was adamant that she didn’t need a “buddy” to help her. At that first game when she went up to the plate all by herself, hit the ball, and took off for first base….oh, my, it felt like the whole crowd had tears in their eyes!
She also tried to participate in the Special Olympics Equestrian program, however, sitting with the growing rods is still an area where we are working out the kinks. She has to sit on a special (and expensive) cushion (z-flo) to be able to sit more than ten minutes without complaining that her “butt hurts.”
Our daughter’s growing rods are anchored to the vertebrae directly above her pelvis, so the pressure she experiences while sitting is significant. Unfortunately, riding a pony just wasn’t in the cards for her at this time, but she did participate for several weeks and was always full of smiles as she rode “Hunter.”
So what’s the plan moving forward? August marks the one-year anniversary of the growing rods surgery. Every three months, she is seen in the orthopedic clinic to have the rods lengthened. The MAGEC rods make that process very smooth. There are magnets within the rods, and a machine is placed on her back which turns the mechanism to lengthen the rods without having to actually handle the rods…no cutting her open to lengthen them. Pretty nifty!
We will return to Nemours of Delaware in November to assess how the process is going and get a better idea as to the timing of when they will max out and if a second set of rods will be required before her spine is permanently fused. So, while we are still in the midst of our scoliosis journey, things are rolling around smoothly. A recent x-ray showed that the hardware is still in place and that she has been lengthened almost ¾ of an inch.
We hope that you enjoyed reading about our daughter’s scoliosis journey and that you will continue to follow her inspiring story as we share our Travels with Our Trachie.
Coming Soon… the Schwieterman Summer Adventure Series 2025 will find our trachie tackling the trails of some amazing National Parks out West. Stay tuned!














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Mayah's journey has been a magnificent testiment of fortitude and faith. I have been inspired and awed by all of you and have missed not one of your blogs and your book so eloquently written. I got to hold Mayah in my lap at a family get together at Debbie's home when Mayah was just a baby. So precious was that moment to me. I am looking forward with much antisipation to reading more about your experience with the rods and spinal fusion. Your family is all so supportive. If only all children could be so blessed with parents and siblings as Mayah's. You are always in my thoughts and prayers. GO MAYAH!