So many of you have journeyed with us from the time that we committed to adopting our sweet Hasya four years ago. Where does time go?! In so many ways it feels like she has been with us forever. In other ways it feels like just yesterday that we made the very difficult journey home. Haz got admitted into the hospital as a fifteen-year-old weighing 20 pounds when her body started shutting down and slowly began the rehabilitation process to get her desperately malnourished body to a place of being as healthy as she could be.
And now, three years later, we truly do have so much to celebrate and be thankful for. How exceedingly well this young lady has done! She joined our family with a very long list of special needs (most of which I was completely clueless about). We have seen the Lord do miracle after miracle as she has become stronger and healthier. Haysa has astounded us with her courageous spirit and gutsy determination.
One of the things that we have struggled with the most has been Hasya’s extremely fragile bones. In three years she has had two bone fractures (and who knows how many while living in the orphanage). Thankfully, we haven’t had a fracture in nearly two years and that is something to rejoice about. However, years and years of neglect and malnutrition mean that she will always struggle with osteoporosis (unless, of course, God heals her). In addition to weak bones caused by being non-ambulatory, she has profound scoliosis from many years of lying flat on her back, with very little movement and zero therapy. When we were first admitted into the hospital, we were cautioned that her scoliosis may become worse, but there was no telling how things would unfold as she gained weight and grew.
For the past three years we have done everything possible to prevent Hasya’s scoliosis from curving more. She has sat in a custom-molded seat on her wheelchair to keep her back as upright as possible. We tried a body brace for extra support. Unfortunately though, a recent x-ray confirmed what I knew in my heart was happening. Her scoliosis has progressed to the point of being extremely dangerous for her heart and lungs, and nothing is preventing it from curving more.
This week my sweet girl and I consulted with one of the top children’s spine specialists in the nation. He confirmed what the first orthopedic surgeon had said–a spine fusion (a rod inserted down the spine to straighten it) is the only option we have to extend her years and give her the best quality of life. Without it, her lungs and heart are in grave danger and the risks of pneumonia and illnesses too high. But it’s complicated. Hasya’s fragile bones (and spine) and other medical issues mean that the surgery is way more complex and carries far more risks. Because her spine is so fragile, it will have to be braced and built up with pins, plates, and brackets in order to be strong enough to hold the rod. However, the surgeons are unwilling to move forward with the procedure until we have consulted with many other specialists to ensure that she is, indeed, a candidate for such a complex procedure. We are so grateful for their cautious approach.
Starting in a few weeks, we will travel to Denver for many appointments for a sleep study, a pulmonary physician, a cardiologist, an endocrinologist, an anaesthesiologist, etc. After meeting with everyone and after the medical team had been consulted, Hasya and I will meet with them all to discuss their findings. Ultimately, they will either decide that Hasya is a candidate for the surgery and will give us the green light, or they may feel that the risks are just too high. We don’t know what the outcome of all this will be. The thought of them saying no to what would be life-extending surgery, well, that’s just too hard to think about. And if they say yes, then there are still risks and many unknowns, but it could add many years to her life and give her a level of comfort that she has most probably never had.
We don’t know where this journey will take us as a family. We don’t know what the Father has in store for this young lady who has been one of the greatest gifts He could ever have given us. No words can ever express how blessed we are and how thankful we are for this little angel in our lives, and for all of the prayers that have been uttered on her behalf. But we do know this one thing. He holds it all! He has written such a beautifully redemptive story for her life and He alone knows her future.
In His sovereignty we will rest.
Thank you for praying over the next few weeks. We have much to do as we consult with everyone on her medical team. I will be sure to keep you all updated. Thank you for trusting God with us in all these things. We are so, so grateful!
To Him alone be the glory!