Kaitlin

[Guest guest]

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