Janet

I joined CK over 4 years ago scared as hell, I thought that Fiona was the only child in the world that had cranio. I was lost and alone. CK quickly became my second family. I found out Dec 2010 that Fiona needed a second surgery. I don't have the date yet and I have no clue when it's going to happen. I feel really bitter about it. We were told at the original appt that needing a second surgery is so rare, 2% of cases....and Dr Phillips has NEVER had to re-do a CVR. I'm happy that she doesn't need another CVR...but I think why her, why is she the 2%. She is such an outgoing, loving little girl who has learned that Dr's are not evil people who jab her with needles She finally has trust when it comes to dr's. She actually asks me to take her to the dr's even when she gets a little scratch. I'm afraid that all this is going to go down the drain. She is going to be almost 5 or even 5 when she has this next surgery, she is going to remember it....I remember getting my tonsils out when I was 4, I'm now 37. I know that this surgery is less invasive....but she is going to have IV's and drain tubes....how is she going to react to this? I know if I saw a tube hanging out of my head I would be a little freaked out. I want to make it perfectly clear that what's going on with Fiona is not a result of anything that her surgeon did or did not do, it has nothing to do with plates and screws. Fiona has many soft spots and bone resorption....but I know many kids on here that used Dr Phillips and other that also have plates/screws healed without any issues at all. I wish that I could take her place, I know one day she will thank me....right now she is held back in certain activities because of her skull. Hopefully she won't have to wear the helmet too long for this upcoming school year. Just so you guys know, I'm not going to be as active on here until after Fi's surgery. I'm not leaving....I just may not post as much, some stuff on here is really draining for me and right now my number one priority is my family.....I'm sorry if it sounds harsh but sometimes you need to take a step back and keep your mouth shut, especially when you are stressed out and not thinking straightLove to all.