Rose S. update

[Guest guest]

A little background:

Rose was born with a left clubfoot over 5 years ago. At 10 days old she

received her first, crappy below-the-knee cast from the hospital's on call

ortho who hadn't seen a case of clubfoot in 8 years. After a hellish cast

removal the night before, he was excited to hear she hadn't kicked the cast

off, so the next cast stayed on for two weeks. Woo hoo. At around 2.5 months

she was referred to a pediatric ortho who was 3 hours away. He said the ortho

had been casting incorrectly, and the casts should have been above the knee.

The ped ortho went on to apply a large fiberglass cast. We were then to

alternate visits with the ortho and ped ortho, and to tell the ortho to apply

an above-knee cast.

Rose also had x-rays to determine that, yes, she would absolutely need surgery.

I remember the ped ortho holding up the x-rays in the window and explaining

and showing exactly why it would have to be done. He traced her foot showing

what would be done to correct it. ...We will cut this here, pull this down,

cut this here, align this. Then she was to wear a large post-surgical casts

for 6-8 weeks and go onto wear an AFO for a year.

Didn't happen. At six months of age and only three weeks before her scheduled

surgery I called Dr. Ponseti. Thanks to 's encouragement that it was NOT

too late. Rose received a cast from Dr. P, and it responded marvelously.

After the first cast, Dr. P said her foot looked fantastic, and she could have

her tenotomy now. We started wearing the brace a week after she would have

gone through surgery.

So, anyway, a little longer winded than I planned, but Rose wore the FAB till

she was 2.5. At that age, Dr. Ponseti was concerned that she had loose

ligaments and at that time we discontinued using the FAB.

Rose is 5 1/2 now and in kindergarten! Having fun. Anyway, she has started

physical therapy this year. We saw Dr. Ponseti in June, and he wasn't very

happy with how her foot looked. He did not recommend PT, but he did suggest

roller-skating to stretch that inside tendon. Rose's toes were really turning

in because the large inside tendon is tightening. Fortunately, her heel was

still down, and she had a fairly good range of motion, so we didn't have any

talks of surgery. Dr. P felt she was too old to start bracing again.

As for the physical therapy it isn't to help her foot so much as it is to

strengthen her entire leg. Rose's doctor was concerned that her leg was

significantly weaker than her right leg. She couldn't hop very much on the

clubfoot leg. So we decided to go ahead with the PT, and I have noticed the

leg has gained strength. Hopscotch is one of the exersizes she does. She

is doing some tiptoes and using a rubberband to push against. Anyone have any

thoughts on the physical therapy? Parents of older children with unilateral cf

have you dealt with a weaker leg due to the cf? Also, does anyone with older

cf have leg length difference? Rose has a very small leg length difference,

and we are thinking of using an insert in her shoe.

I think when we saw Dr. Ponseti, Rose must have been going through a major

growth spurt. I have some pictures to share of her foot. The first two

pictures are from June prior to seeing Dr. P. The next five are pictures

before starting any PT, and they look straighter (we've been praying hard).

Here is the link:

http://pg.photos.yahoo.com/ph/joybelle15/album?.dir=mail&.src=ph&store=&prodid=&\

..done=http%3a//pg.photos.yahoo.com/ph//my_photos

I believe we'll be going to the symposium in November. For awhile, I was

feeling really depressed about the appearance of Rose's foot. I have now

gained a more positive perspective, but at the time it was tough! This got lot

longer than I expected, and I have things to get done. Better get to them.

So sorry I don't keep up here as much as I should.

Joy

Rose 1-30-99

Iris 2-28-01

Spencer 3-12-03

=====

http://www.geocities.com/joybelle15/rosesclubfootpage.html

__________________________________________________