We had our first Scottish Rite appointment. It was more of a consultation, and we did a few things to get the "ball rolling" on his treatment.
There are somethings that we knew that were confirmed, such as: his hips are dislocated, his left leg is hyper-extended with little mobility, his right knee is doing pretty well and he has control over movement on that leg, and his feet are clubbed and stiff. We also had some clarification on some other things, such as: his arthrogryposis is not typical in that it does not affect his upper body, and he may have a neurological disorder that is affecting his joints that is not necessarily arthrogryposis. They may or may not be able to identify exactly what he has, and the recommendation was to see a neurologist for some further testing. He had lots of x-rays done today, but we will not see them until our next appointment.
After our neurologist appointment, we will meet with our orthopedic surgeon once again and schedule his club feet surgery. This will not be a one time fix. The orthopedic surgeon explained that the process needs to be slow in order to avoid causing nerve damage. He will probably have at least two surgeries and there will be casting and physical therapy in between and after. There is a 50% chance that his feet will go back to club position after surgery, and we will look at other options if that happens. After the feet surgery, we will look at his mobility again. The doctor feels that often more damage is done to the hips and knee by having surgery, and with physical therapy, he may be able to compensate with how he is "built" once his feet are flat. We'll have to wait and see.
The physical therapist also looked at him, and she recommended the use of a walker with a soft brace over the knee he can not control. He walked all over the hospital and home with the walker. He is much slower with the walker than his "normal" walk, but I think he really likes being upright. Part of the reason he is not walking is not simply about the club feet. His hips and the muscles associated with that area which help us balance are not well developed.
We also have an appointment in May to look at options for a wheelchair. Although the doctor felt confident that he would walk, he was not as confident that it would be without some type of "device". He felt that it will be labor intensive for him to walk, and he would probably need a wheelchair for longer distances. This may be the case, but Andrei is one determined little boy, and if there is a way for him to walk, he will do it all by himself (words we hear often from him).
Scottish Rite is an amazing place. Not only will the treatment be free, they have some of the most gifted surgeons and specialist in the state. We are so blessed to have been accepted into their "program". Thank you for your continued prayer as we move into a new stage.