Kayli has several bone/muscle issues, that are compounded as a result of 3 situations, if you will. Kayli has Trisomy 18, which can have a characteristic of hypotonia and hypertonia (low and/or intense muscle tones). She has also inherited spinal issues (Maternal family side). In addition to those, she lost all muscle control when she had the 32 minutes of anoxia (her brain was no longer able to "tell" her muscles what to do).
The compounded issues result in significant Scoliosis (the tighter muscles pull one way, while the low toned muscles allow the shift), Kyphosis (hereditary), and bilateral hip dysplasia (Trisomy 18 growth issues, hypertonia and hypotonia). Bracing gave minimal help, while the surgical interventions are major, and have been appropriately delayed as a last result. We have struggled not only with finding a qualified surgeon who is "Trisomy friendly" (meaning willing to treat kiddos who have a Trisomy diagnosis) for her spine, but also with the high risks we would be giving Kayli if we chose surgerical interventions.
With the difficult challenges before us, we have also been seeking alternative solutions in helping Kayli with her progressive bone and muscle deformities.
As recent as yesterday, I was enlightened of an intense therapy program practiced overseas. It is the ABR therapy. While I am very interested in learning more about this therapy, I am also seeking help inside the USA. If you know of anyone in the USA who is practicing this therapy, please contact our family! This is the video explaining the affects of ABR therapy vs. hip surgery.... ABR therapy video
Here is more information of ABR therapy... Romania ABR therapy resource
Even a damaged brain (which 32 minutes without oxygen did to Kayli's brain) can benefit from this therapy!! Once on this site, you can change the translation to English. Damaged brains develop with ABR therapy