Jaeya had twelve x-rays and has every part of her body on film and in the Shriner's computer. She was her typically worried self and at the repositioning of each shot had to be assured
THIS POSE would not be ouchy. Each time a new doctor or part of the team walked in she had to also be comforted that this person would not hurt her. So, to get a picture of her smiling like this with Dr. Pond is so telling of her relief and trust in him.
We found that Jaebird has gained 2 lbs since her adoption physical in Guangzhou on March 31. WHOOOOWEE! She now tips the scales at 29 lbs. Meisyn was truly delighted to find that she is 30 lbs and bigger than Jaeya. Older sister was not at all impressed with this.
Jaeya likely has Type III osteo-genesis imperfecta (OI) which is the most deforming and debilitating after Type II which is lethal before, during, or shortly after birth. We will know for certain when the test results come back. That did not come as a surprise. We suspected that before her adoption.
These are the markers for Type III
- Bones fracture easily. Fractures often present at birth, and x-rays may reveal healed fractures that occurred before birth.
- Short stature.
- Sclera have a blue, purple, or gray tint.
- Loose joints and poor muscle development in arms and legs.
- Barrel-shaped rib cage.
- Triangular face.
- Spinal curvature.
- Respiratory problems possible.
- Bone deformity, often severe.
- Brittle teeth possible.
- Hearing loss possible.
- Collagen improperly formed.
Jaeya's knee caps are on the sides of her knees. Uh, that is not so good for bending. Her knees cannot extend more than 45 degrees. Her right arm is much shorter than her left due to a previous fracture. Her elbows do not extend. They are permanently bent at 90 degrees. She has scoliosis.
Jaeya has significant bowing of all her limbs. Before or during birth she appears to have broken her pelvis and it has never been repaired. Her muscles have been contracted for so long that it has caused permanent damage. It was our hope that through rodding surgeries and extensive PT that Jaeya would be able to walk independently.
After manipulating Jaeya's limbs and reviewing her xrays the specialists feel that putting her through all the pain of the countless surgeries that would be required for a minimal chance to be able to walk "would be folly". The amount of pain for minimal gain is likely not worth it. The muscles have been contracted for so long that messing with them could cause nerve damage that can result in paralysis or constant and significant pain. My husband deals with neuropathy and we don't want to see her go through that.
So, the plan for Jaeya is to have pamidronate IV treatments. She will have titanium rods implanted only after a serious break not as a preventative measure. She will be fitted for a power chair so that she can remain safe, comfortable, and mobile.
It was disheartening to hear that Jaeya will likely need a wheelchair for the rest of her life. She has been tremendously worried about being in pain from surgery and the doctors "breaking" her. We don't want to put her through the trauma if the results will be minimal. I do have to smile to think of her zipping around in her power chair. Watch out world. Jaeya wants to experience you!
Perspective is a funny thing. As I entered Shriners I would have been so disappointed to know the prognosis that was given to us just hours later. But, by then we had Meisyn's tentative diagnosis. Jaeya may not walk, but, SHE WILL LIVE.