This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Thursday, January 14, 2010

disappointed disheartened annoyed

put off and many ohter 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.

Sunday, January 10, 2010

ideas anyone?

I am tired of showering with 17 kids! ok its only 2 or 3 but it feels like 17! We do not have a bathtub. We have only two showers. Sophie with her legs at 90 degrees and Ben who cant/wont walk barefoot and without splints to the shower and in the shower (and Maia who just doesnt like to shower alone!) As they get heavier its hard to lift them off the floor of the shower while they are soaking wet and slippery. and cleaning them while they sit on the floor of the shower isnt so fun either. So I need ideas here! Ben is 6 but pretty small and sophie is 4 and pretty small. Are there help things out there I can use in the shower? it isnt a huge shower because it has a seat built in which oddly enough is pretty useless as the kids just slide right off of it. IDEALLY I would move to a new house but that just isnt happening so I need to find a way to get them cleaned up quick and easy and be able to shower ALONE. One shower has double sliding doors, one has only a swing out glass door. we mostly use the one with the double sliding doors. (ps who the heck builds a house without a bathtub???!!) HHEEEELLLPPP!

Shriners Appt Thursday!

We see the lowers guy on Thursday and should get the new AFOS then too. But I dont get why they are putting new AFOS on ben when his feet are SO SCREWED UP. He learned to swim this weekend so he got LOTS of ROM. Sophie SO needs new AFOS. her feet baarely fit into the old ones. Hopefully with pretty fairies and pink straps she will be happier to put them on. Once they are on she doesnt fuss about it. but she hates PUTTING them on because they are so tight to get her feet into.