Sunday, January 10, 2010
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.
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I am surprised that they fit either of the kids for AFO's BEFORE seeing the lowers doctor (because HE should be the one who specifies exactly what they need and how they should fit). If he decides to do anything with Ben's feet, they could have to toss the brand new braces right out the window in the end!
ReplyDeleteHave you considered making a trip to Philadelphia to see Dr. Van Bosse, even if it is just for an opinion (and not for long-term treatment)? He is much more aggressive in his treatment and, at 4 and 6, it could be very beneficial to Ben and Sophie.
Looking forward to hearing how the appointment goes!!
thanks for the tip. since we havent seen the lowers doc we will see what he says on thurs. then we can consider what to do. is aggressive the way to go though? I thought it was more a slow and steady wins the race kind of thing for AMC?
ReplyDeleteHaha! Oh, it WILL be slow and steady, even when it is "aggressive!" That is just arthrogryposis! It has been about 15 months since Evan first started receiving treatment in Philadelphia. Since that time his feet have been corrected via two rounds of serial casting (this was after surgery here in Ohio; about 9 casts in total), his externally rotated hips have been rotated (bilateral femoral osteotomies) and we have managed to get his knees from about 80 degrees on both sides to 15 on the left and 10 on the right. And now, for the first time in his life, he is finally able to start working on standing and walking (at 5.5 years old, 2 years after coming home). It has been a VERY slow process and we still have a LONG way to go, but if we had stayed with our local orthopedist I have no doubt he would still have partially corrected feet, externally rotated hips and severely contracted knees. With arthrogryposis, especially when a child is still growing, it is more a matter of being constant in your treatment (effective bracing, therapy, stretching, etc.) and that is where "slow and steady wins the race" comes in to play.
ReplyDeleteI think it is very wise that you have waited until they have been home for awhile before jumping into a lot of treatment (we waited 4 months before Evan's first surgery and, if I could do it all over, I probably would've waited even longer. . .or just waited to see Dr. Van Bosse). They will both have a VERY long road of treatment ahead of them so ensuring that attachment and bonding have taken place is a must.
I have never met a doctor as knowledgeable about AMC as Dr. Van Bosse. He has made ALL the difference in Evan's treatment and progress (and with the severity of Evan's amc and his late start in life, aggressive treatment has been necessary for him). His hand is in every aspect of his treatment (surgeries, bracing, therapy, seating, etc.) and because he is more or less coordinating everything, the treatment has been very effective.
Tracey tells me that the doctor you will be seeing is great as well, so he may do just as good of a job, BUT, if you ever feel like he is not being as proactive as he needs to be. . .we would love for you to join our Philly family :-)
I may sound like a dummy but what are AFO's and what do they do? I have an idea but not exactly sure.
ReplyDeletemelanie afo stands for ankle foot orthotics. its a brace. = )
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