New Member/repetitive surgeries

[Guest guest]

It is so nice to hear from other moms and dads that understand what

you are going through. We are from Iowa and my daughter has had her

surgeries done at the Univ. of Iowa Hospital. My daughter is actually

my third child and the only one with BPES. We can not trace it to

anyone else in the family. We know that God has blessed us with a

very special little girl and can't wait to see what He is going to do

with her life. You are right it is very hard to see a little person

so small go through so much. I definitely think it is much harder on

the parent than the child. They have not really talked with us about

the tissue that they retrieve from the leg. I know when Emma had her

last surgery they had to use tissue from the donor bank because she

was not big enough. Sometimes I wonder if we should have gotten a

second opinion but where my daughter was born none of the doctors had

ever seen anything like this. Thanks for all the info so far.