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Help support Madelyn in her healing journey!

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Hi all - this is Mark and Jackie, Madelyn's parents.
We were encouraged to set up a Go Fund Me due to there being a lot of extra costs related to Madelyn's scoliosis surgery that aren't covered by insurance. (Flights (including return having to be 1st class to recline/minimize pain), lodging, meals, transportation, a special recliner and zero gravity chair, bed wedge pillow, etc.) We have a few possibilities on helping lodging/ flight prices so will lower the estimate if those come through.

The backstory: (super detailed nitty-gritty if it interests you)
* May 19, 2021: At her well child check her pediatrician noticed that Madelyn had "some scoliosis" and she would refer her to orthopedics. We didn't think much of it.
* June 8th: We met with an NP at Orthopedics who showed us Madelyn's X-ray. We were entirely shocked by this. The NP was surprised to hear that Madelyn had not had any pain, breathing problems, nerve or tingling issues in her extremities etc. She told us (which we knew) that Madelyn’s curves were clearly in surgical range with a 56-degree right thoracic and 62-degree left lumbar.
* June 28th: We met with the Orthopedic surgeon who talked through fusion surgery with us. With her significant S curve, she would need to have a lot of her back fused (fusion is permanent, no more growth in height (she’s 4 ft. 7 in.), loss of flexibility, etc.) Madelyn’s only question was, “Will I still be able to do a backbend?” He kind of froze and said, “Of course you would ask that…” and said no without saying no. ☹
* He said fusion would be scheduled asap and she would be 1st in line for any cancellations due to the severity of her curves.
* July 2nd: Madelyn had 3 spine MRIs in a row, for 1 hour and 10 minutes straight and was a TOTAL champ. She certainly handled it better than I (Jackie) could have. Thankfully, there were no new concerns identified.
* July???: (not sure): We 1st heard of VBT (Vertebral Body Tethering) which is a newer procedure for adolescent idiopathic scoliosis. She would not lose flexibility and would continue to grow. This link explains it fairly well: https://www.childrenshospital.org/conditions-and-treatments/treatments/vertebral-body-tethering?fbclid=IwAR1Zj_AUhjydmO0LMzNmIx8YDdOtzfn_MaWGl0hzSkaP2U6bDXZWYGBhA5o
* July 24th: We sent X-rays to Shriners Hospitals for Children Philadelphia where they pioneered this treatment, have been doing it about 10 years and helped it receive FDA approval in 2019, to see if they thought she could be a VBT candidate.
* July 28th: we received approval for an in-person consultation from the surgeons on the Spine Team. However, they said she would need to be seen asap as she was at the higher end of the spectrum for VBT approval/qualification.
* August 16th: We had our in-person consultations in Philadelphia. Lots of x-rays (spine bending, spine complete multiple views, left wrist for bone age). Met with Dr. Pahys (one of the experts in VBT who helped gain the FDA approval) who said she could do VBT. We were so thankful!!! We got to do the Pre-anesthesia Clinic Evaluation, Pulmonary Function Testing and an EKG that day.
* Forever…. Probably late September/early October??? we got confirmation on our November 3rd surgery date!
* Oct. 22nd: We completed all of her pre-surgical bloodwork etc. – 6 vials of blood – and thankfully all of that came out normally, no concerns.

Upcoming:
Nov. 1st: Madelyn and Jackie fly out to Philadelphia, landing around 11:55pm.
Nov. 2nd: 9 am Covid test and then a tour of everywhere she will be - surgical suites, PICU etc.
Nov. 3rd: Surgery day!
? TBD: A few nights in the PICU at Shriners (Lots of work and pain for M). PT to get her moving quickly, breathing exercises to help regain pulmonary functioning (each of her lungs will be deflated for part of the surgery), pain control etc.
? TBD: discharge to outpatient status with visits to check progress
Nov. 14th-ish/when approved: Return flight back to Denver
Nov. 29th: Probable return to school, (504 accommodations already in place)

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    Organizer

    Mark Reitsma
    Organizer
    Thornton, CO

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