Wednesday, May 22, 2013

Kayli's spine

Kayli has had an amazingly well week! We have been stretching out her back, and added a little extra water to her diet, which has been keeping her heart rate in a more typical range and her oxygen saturations have been in the high 90's as well! We hope to get more information today, about her inpatient date for traction (a halo) and spine surgeries. 
I am hesitant to post pictures publicly of her spine, because it is very distorted due to the prolonged anoxia/lack of oxygen (when she passed away for 32 minutes). Just know that her spine is severely affected, and is compromising her basic organ functions. Her 3 life threatening spine deformities (Kyphoscoliosis, Scoliosis, and Lordosis) have nothing to do with Trisomy 18, however, her recently diagnosed spina bifida and small congenital fusion likely are from Trisomy 18. The reason you see her head tilted to the right in many of her pictures, is not because she can't hold up her head, it is because she is trying to adversely correct the abnormal direction her spine is curving. The extensively intensive spine surgery will be to guide the life threatening spinal curvatures that are a result of her lack of oxygen (neuromuscular complications). I will most likely post pictures of her spine and corrections in a diary like form as we continue this journey. Please continue to pray for guidance and comfort, as we continue down this terrifying journey. God's Blessings unto you!