Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 Yes you are right about one thing afos do suck.. Deante has been in them since March of 2004.. And I dont like them one bit. It seems like im changing his socks every 20 mins now that it is summer out.. His feet sweat horrible.. Even with the baby powder.. But the one thing that I notice about the braces are they arent helping his feet much.. He goes to see Dr Craig in Ann Arbor Michigan on July 23rd. But another thing that I notice is the bruises on the front and back of his legs from the afos. He is supposed to wear them for 10 hrs a day.. And in the summer time its hard to keep them on him that long.. He likes having them on But I have to wash all of his socks like every hour on the hour. I dont like afos and Im going to see what Dr. Craig recommends when we see him in July.. For those of you who dont know Deantes story. He was casted from 2 weeks old to 5 1/2 months old. Then he had the reverse last shoes and those didnt work. So his old ortho decided that surgery was best for him. So he had surgeries at 11 1/2 months old 12 1/2 months old and again at 15 months old. He is now two years old and has the braces.... But Dr Craig did say that if the bravces didnt help any that he would have to have a tendon transfer surgery. So I will be keeping all posted on that.. and Deante bilateral clubbed feet 3-25-02 nosurgery4clubfoot wrote: There are 25 messages in this issue. Topics in this digest: 1. Re: Funny Story From: " michele_and_collin " 2. baby bag From: " " 3. Symposium From: Joanne Fuller 4. Kaitlin From: MJZ28SS@... 5. Re: Re: AFO's suck From: MJZ28SS@... 6. DBB and clothes From: " " 7. New file uploaded to nosurgery4clubfoot From: nosurgery4clubfoot 8. Kaitlin's AFO Pics From: " kmom3904 " 9. Re: DBB and clothes From: MJZ28SS@... 10. Re: Re: Kai's site From: " kitaki " 11. Re: Re: AFO's suck From: " kitaki " 12. Re: DBB and clothes From: " kitaki " 13. Re: Re: Kai's site From: " Sterling-Peek " 14. New to group with a question From: " tonya " 15. Re: DBB and clothes From: " " 16. virus From: " Bonnie Bowman " 17. Re: New to group with a question From: " tkbmangum " 18. Difficulty sleeping From: " tkbmangum " 19. Re: Kaitlin's AFO Pics From: " & Rich " 20. Re: Kaitlin From: " loulee3412 " 21. Re: AFO's suck From: " " 22. Re: Difficulty sleeping From: " & Rich " 23. Jake's cast removal adventure From: Kassia and Seth Fultz 24. Re: DBB and clothes From: " " 25. Re: Re: DBB and clothes From: " " ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Wed, 16 Jun 2004 19:25:57 -0000 From: " michele_and_collin " Subject: Re: Funny Story That is so cute, it must be the age...Collin will be 3 in August and he is always pretending to be Dr. Herzenberg. It is sooo cute too! Michele Collin's story at http://www.geocities.com/chele323232 ________________________________________________________________________ ________________________________________________________________________ Message: 2 Date: Wed, 16 Jun 2004 21:16:25 -0000 From: " " Subject: baby bag I think someone a while ago was wondering about bigger baby bags. I found this web site with some bigger sized bags. http://www.babyinabag.com/index.htm ________________________________________________________________________ ________________________________________________________________________ Message: 3 Date: Wed, 16 Jun 2004 19:07:59 -0700 (PDT) From: Joanne Fuller Subject: Symposium Just wanted to let you all know that the symposium in Iowa is November 12 and 13. If you would like to be part of the symposium let Joyce (Dr. P. secretary) know. They have not scheduled specific times or appointments yet. Hope to see you all there. We are about 98% sure we are going as long as Tony's parents don't come back from Kenya that week. Joanne and Alaya 8-22-01 ________________________________________________________________________ ________________________________________________________________________ Message: 4 Date: Wed, 16 Jun 2004 23:07:09 EDT From: MJZ28SS@... Subject: Kaitlin Hi Everyone, Kaitlin slept in her DBB last night...I gave her Tylenol and she slept with me since my bed is softer and it doesn't seem to put as much pressure on her heel. (We have tried using a pillow under her feet in the past, without success.) I was at work this morning when my husband took the shoes off- I had to leave at 4am, no way I was going to wake her up! He said her right heel was red were the old sore was, but not too bad. He left the DBB off for the day to try to prevent another sore. I can still see where it rubbed a new red spot though. We figure that even if her heel does wiggle, it can't wiggle too much if she is still like she is when she is asleep... He tried to put the AFO on her clubfoot during the day so it wouldn't be left unbraced. (We are still in the 23/7 period of wear.) Once again her leg was BRIGHT red in less than an hour. I am going to call the brace shop on Friday when I am off of work and see what I can work out with them because it does not do what they said and it is way too tight. I am starting to notice her foot slightly turning back in again...big bummer. Her doctor probably won't cast it again, even if I took her back. He is not very aggressive- he actually told me that we could just leave her foot unbraced and " watch to see what happens. " He is not a Ponseti certified doc, although he does refer to and " follow " the method. The only Ponseti doc in our area is through a clinic that you have to be refered to and they won't give appts. They just say come on Monday between 1-4 b/c that is when they see CF babies. We would have to have a referral from our current ortho and I hate to switch to a doc that we couldn't see if we needed something on a day other than a Monday. The whole thing seems bizarre to me- is anyone else's doctor like that? I believe that the brace shop we go to kind of sucks, since they are the ones that screwed up her first bar (the bar was a lot shorter than her shoulders). I don't know what to do, one would think that in the big city of Charlotte, NC there would be more options or atleast educated practitioners. I most likely will contact about the Brace, but if I can't get the brace shop to take this AFO back then I can't afford them anyway. So I guess there isn't much point. I am praying that the DBB will work better this time. Her CF shoe has the plastizote in it still, but not the right one b/c we cut the heel out. I use the Old Navy socks with the grippers and blister pads on her feet, not sure what else to try. I hope this email makes sense to everyone- I have been up for a very long time today and am kind of in a hurry to go to bed. I still haven't had time to take pics of the AFO and Kaitlin's foot. It will probably be late tomorrow night since I have to work tomorrow. I just wanted to check messages and respond right quick. Once again, I am SO grateful for all of your help! Freeman Kaitlin Freeman 3/9/04 LCF Quote Link to comment Share on other sites More sharing options...
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