December 16, 2016 "Two appointments"

1-Pediatric Orthopaedic Surgeon

Patients at UNC are always seeing medical students, interns, and residents. We don't usually put a lot of thought into what these people say because they are NOT the actual doctor. But this particular intern, Katie, had some really good insight. After her examination she stated that Rayden's knees do not want to go all the way straight. His right foot turns inward more so than the left. It also has a bone that sticks out which she believes is the end of his fibula. She believes a posterior tendon release surgery is not needed at this time because his dorsal action is really good. She believes his tibialis anterior tendon on the top of his foot may be pulling too tight causing his feet to turn inward. She thinks we need to transfer THAT tendon to a more lateral position to redirect the pull not the posterior tendon.

Dr. Cuomo, pediatric orthopaedic surgeon, actually saw Rayden walking down the hall with his walker. (We have to keep this toddler occupied somehow!!) She seemed amazed at how much the twister cables have improved Rayden's ability to stand and walk. The fact that Rayden will actually stand up flat, on the bottom of his feet, when he doesn't have his cables on is really amazing. After examining his feet she said he was doing so much better than she thought he would. She actually stated, and I quote, "He is looking darn good!" Although he is more flexible now than he was after his last surgery, thanks to the twister cables, they are not going to fix his problems. Rayden has tibial torsion. This means his tibia bones are rotating inward causing his feet to turn inward as well. Dr. Cuomo said the twister cables are forcing his feet straight for now but as he gets older and stronger they will not work any more. He has already broken them 8 times in the past two months. His body will continue to fight them and we will eventually have to do the surgery. She stated that when kids are making such big motor gains, like Rayden is right now, she doesn't want to do a surgery that will only set them back. The surgery he is needing will require cutting and repositioning bones preventing him from walking for quite some time. Therefore she would rather allow his brain time to explore and understand motor control. When the equipment is holding him back or we have gotten tired of breaking the equipment, then she will do the surgery. The surgery will fix his bones to achieve the same result the twister cables are doing. Although we are upset that he will have to go through surgery again in the future, we are relieved that it is not right now. Dr. Cuomo wants to keep a closer eye on him than other patients. Therefore we will return in four months. In the mean time, she has prescribed him some new AFOs, shoes to go over them, and thicker twister cables.

2-Pediatric Opthamologist
They began by using picture cards to find out what Rayden could see. They said this is the earliest vision test. I'm not so sure it gave them ANY information because he was NOT cooperative at all. A two year old does not take kindly to patches over their eyes! Especially Rayden, who HATES stickers!!

Rayden has been turning his left eye outward sometimes for the past two months. I brought this to the attention of his neurosurgeon who recommended we go see the opthamologist. Dr. Grace, opthamologist, stated that his eyes are lined up and she didn't see anything abnormal. His nerve pressure is normal as well. When I showed her the picture, she began to understand what I was talking about. She called it Intermittent Exotropia, pretty much the opposite of what he had previously. This can be totally unrelated to anything so at least we are not looking at more pressure on his brain. Since it is not something we see all the time her recommendation was patching. She wants us to place a patch over his right eye (good eye) an hour a day to force the left eye (drifting eye) to work harder. She said the eye is not sending the correct signals to his brain if it is drifting. This will eventually make the brain only trust the right eye and the left eye will stop working. The brain is pretty powerful!
She also stated she does believe he has good vision but she's not sure the vision is equal in both eyes. She thinks his visual field may be blocked which is why he turns his head sometimes to see things. She wants to see him again in four months as well.