Tuesday, March 1, 2011


Well here we go.....I'll warn you, this blog entry is kinda like one of those times where you just need to get out all the crap in your brain. I apologize ahead of time for what my come out of my head, lol. Well Haley is leaking from her urethrea. totally spelled that wrong. That is NOT suppose to be happening. It's been happening a lot all of a sudden. This has shot fear straight thru me. She had a HUGE surgery 10 years ago... she doesn't remember it. She has a roadmap on her belly of scars, and doesn't remember why they are there. We knew at some point she'd need surgery. I thought I'd be fine, well, I'm not. I'm waiting to hear back from the nurse. The first step is ultrasound, X-ray, some other tests... I emailed another female w/ bladder exstrophy who is an adult and she needed a revision surgery at Haley's age because of the same issues. She pretty much chalked it up to puberty. As if acne, periods, attitudes, mood swings, akwardness..yada yada yada..isn't enough, through in surgery along with it. WTH?????? I will admit I am being a bit dramatic. but guess what, this is MY kid, my baby girl. I have watched her suffer, we have seen her go thru hell and back on more than one occasion, and she didn't even know what was going on. Now that she's older, there is no telling how she will handle this. I talked to her today, I wanted to prepare her. Because once we start talking to Dr's and nurse they will be talking about possible surgery and all that, I do NOT want her to hear about a possible surgery up there where she can't process it. I wanted to explain it to her when things are crazy. I asked her if knowing something, not everything of course, makes her feel better, and less scared. She said yes. So that is good. I know that we can give her info on an as needed basis. This is her body after all. She's getting to the age where we can tell her what's going on. And, to top it all off, we could go to Children's, do the tests and they could say, "well, let's just montior this..." bull shit She's been dry all these years. We did not watch her suffer for almost 2 years to be dry just for her to deal with leaking and feeling like she's wetting her pants at age 12. This age is crucial. So much goes on in their minds and self esteem develops at this age. I don't want this stuff to have a huge negative affect on her. The thing w/ BE(bladder exstrophy) is that surgery is inevitable. So we are of the opinion, if it needs to be fix, fix it. ASAP. I don't want to wait. Unless there is some really good medical reason that they shouldn't fix this soon. Get it over with so my daughter can go on with her happy life.
My emotions are all over the place. I'm nervous, anxious, scared, and a whole bunch of other stuff I can't put into words. I know God has a plan. I just can't see it right now. We could go up to children's hospital and come home the same day and go on like normal. The crappy thing is that at some point, she will need this surgery. so..obviously my mind is all over the place. I won't even let my mind go to how all this will affect our 3 other kids... that's another blog.