upcoming surgery concern for Avery Lynn

[Guest guest]

Hello to all of you brave families out there...

I just wanted to share my story....

During my pregnancy I went through several ultrasounds due to having

twins.... at about week 20 they detected a left club foot in one of

the babies and at about 24 weeks, they confirmed it. They also

detected an enlarged lateral ventricle and because of the 2 findings

they had sent us to a genetic counsler and we continued to do many

ultrasounds tracking the ventricle (which didn't change as time went

on and they thought they were isolated findings... big relief for

us). Due to all of the stress I was under with not knowing if

baby " B " would be healthy or not and all of the appointments that I

was balancing and also having a 3 year old (at the time) to take

care of.... I went into labor at 31 weeks. I was able to get the

shots to help their lungs develop and I delivered at 32 weeks.

Delaney was born at 4lbs 16 " (with no complications !!! and Avery

was born 3lbs 10oz and 16 " and had to be on a ventilator for 12

hours and also on a low dose of oxygen for a couple of weeks. Avery

was born with the left club foot. The Doctor came to check her foot

out right away and decided to start treatment when she was released

form the NICU (special care nursery). Getting her stabilized was

more important. She got her first cast 4 days after she got home and

had a different cast on every week for 6 weeks and then had the

tendonomy~SP. She then had a cast for 2 weeks and her foot looked

great and she started with the " shoes " . She did great wearing them

full time for 3 months. Then the Dr said she could do just night

time for 12 hours from then on. Avery decided she liked her freedom

and after 3 night of wearing them she wouldn't cooperate at ALL!!!

She would scream an " ear piercing " scream that would wake up the

rest of the family. (If she was the only child MAYBE I could of kept

her in them). The minute we took them off she stopped so we tried a

few different things to help her but nothing seemed to help. The Dr

changed the degree of the shoes but said she couldn't do anymore.

The foot has started turning in and has pretty much gone back to

where it started... she hasn't had the shoes on in months now. She

is 9 months old and we don't feel like we have many options at this

time. The Dr told us the options were to go through castings again

and start over with the shoes or more than likely surgery (which she

really talked down on... she doesn't want to see that happen but the

shoes aren't an option...)Avery is very difficult to get to

cooperate even now. She is a very light sleeper. She has been

through sooo much that I DO NOT want to do surgery but I really am

out of ideas. The only way I could get her to sleep with the shoes

on was on her belly.

Does anyone have any helpful information for us....??? We are going

to see the Dr on the 28th and talking about surgery. I also notice

that the leg with the club foot seems to be a tiny bit shorter...

has anyone had any concerns with that before? Is it because of the

bend and once it is corrected it catches up?? The Dr told us also

that the heel bone doesn't " drop " until they are about 2 years

old... is that true? Could that be why it seems shorter?

Thanks for listening....

God Bless all of us....

The Ciccione's (Chicago, Il)

Rod and

Chesney 8.7.00

Delaney 6.24.04

Avery 6.24.04 left club foot