disappointed disheartened annoyed

put off and many ohter adjectives.today we went to the lowers guy. to say it was a disappointment would be an understatement. Now the guy was very nice BUT neither of us is feeling very good about his diagnosis and plan. first of all he isnt planning to do ANYTHING for either of them other than brace them. so now sophie has new afos and they are not flat! I dontknow how they would have gotten a good mold from her though because she was flailing about and pissed off over the whole cast on thing so I am sure her foot was pointed. and bens gnarly toes are no big deal either. he says any surgery at this point would be no good because of the old surgeries. so unless they cant brace it anymore they arent goign to do anything. yes he can walk in afos. yes I understand his feet might not be perfect. but doing nothing but AFOS for the next 6 months is what he could have gotten in Ukraine! no he didnt think castings would help either. so ben has this one foot that turns in very badly and one foot that sort of bends in the middle. might be the same foot I cant recall. so that was disapoointing to think that they would have him spend the rest of his life with feet that arent even plantigrade?

SOPHIE! now that was another story altogehter. it was more than disappointing it was cruel and disheartening and quite frankly I think his bedside manner was a little off. but when he figured out my husband had a clue about medicine(is a doctor) he offered us a referral to gilette. which we will gladly take. Basically he said this is as good as it gets, for both of them. bens feet wont get better. sophies legs wont get better. ummmm yeah I figured as much if we werent DOING anything. but now you tell me there is really nothing we can DO? or rather nothing you are WILLING to do? he also said you cant gain ROM. now I know from reading Tracey and the others that you can. not instantly and not without work but definitely not impossible. he wiggled her lower leg up and down a few times and said well she has about 30 degrees rom. so you have to decide where you want it. leave it where it is and she is in a wheelchair or put it further down so she can have straight legs but still only have 30 degrees ROM so she wouldnt be able to use a chair comfortably or walk comfortably or well either. IF she needs a chair one day I am fine with that but it isnt going to be because I didnt try everything and see everyone I could to give her working legs. We always figured that she would need a chair when out and about. but would be able to ambulate at home to do things around the house. He tossed out the Illizarov as an option but tempered it with a lot of disdain and told us that often you end up right back where you started anyways. so why bother I guess? Eric and I have done some research online and also read the arthrogryposis atlas and after our appt felt as if WE knew more than he does.

so yeah its as good as it gets and dont bring them back for 6 months. do nothing and dont bring them back for 6 months? Scratch that I dont think we will be bringing them back at all.