April 13 ~ Pediatric Orthopedic Surgeon Appointment

Lily had her appointment with the pediatric orthopedic doctor/surgeon. She is also a specialist in pediatric Spine/scoliosis issues. 

I did find out that the nurses at the Pediatric Neurologist office didn’t know her MRI was only of the brain and CEREBRAL spine. It did not go all the way to the base of her spine. I talked to two separate people at that office before her scan was done and they assured me it was the full spine, as we had recalled an injury she had on her lower spine in 2007. I was told if there were issues from that injury it would show up on the MRI. The orthopedic doctor read through the results of the MRI and said they looked over every little area of her brain and cerebral spine. Lily had the best person to read it: a neurologic radiologist. He found nothing that would suspect cancer, a tumor, or a mass.

She did a lot of testing on her muscles again.  When Lily was asked to do a wall push-up with her left arm, she was able to do it with no problems.  When she was asked to use her right arm, she couldn't push with any weight on it.  So she definitely has a lot of muscle loss on her whole right side.  She also checked her spine for curvature. She did not see any curvature, but ordered a standing x-ray of her spine. The radiology specialist and her orthopedic surgeon looked at the x-ray and showed us her pictures. There is no evidence of curvature, the injury to her back, or any tethering of her spinal cord. She did note her growth plates were finished, so she said to  Lily "I hope you're happy with your height, because you're about as tall as you're going to get!"  Lily looked at her and said she didn't like how short she was and laughed.  She's about 5'5", so she's not too short.

The ortho doc said if we can’t get things figured out, we may need to be referred to the Mayo Clinic. She doesn’t think it will come to that, as we’ve ruled out anything serious that would be causing Lily’s hemiparesis. We may be scheduling an EEG and/or EMG soon. She noted Lily had hyper reflexes, but she doesn’t have other symptoms of hyperreflexia or hyperreflexivity. The ortho doc said her symptoms are somewhat like Ataxia, which is lack of muscle coordination in movement, speech, eye movement, and swallowing. The only symptom of Ataxia she has is the lack of muscle coordination in movement. The other 3 (speech, eye movement, and swallowing) don’t pertain to her.

So this is where we are. Lily has to be fitted for an AFO (ankle foot orthosis) and a DAFO (dynamic ankle foot orthosis). One is for her to wear during the day, the other is for her to wear at night. They will cast her leg and take a mold from that to make the AFO/DAFO’s. After they take that mold, we have to go back to the Orthopedic doctor and have her foot/leg put in to a cast for about 2 weeks until her AFO/DAFO’s are done. 4 weeks later we get to go back to see the pediatric orthopedic surgeon to see if the AFO/DAFO’s are helping. 

Our heads are still spinning from all of this information.  I'm hoping we are getting somewhere now.