Holy smokes. Emy (dd) had surgery in NY (Sloan Kettering, Dr. Laquglia) in Nov (nephrostomy bags on both sides, right side stayed in for FIVE months, until it got caught much like your seatbelt incident). Then she got a stent, then another bag (for another three monhts). I feel your pain.DH is on the list serv, but doesn't really post much. ONly when we were in need of a surgeon. The surgeon here in Dallas didn't have much experience with bilateral wilms, hence the reason we went to NY.
I'm halfway through your cb site, and I have teared up more times than I can count. A lot of her journey sounds like Emy's. Our poor kiddos! :grouphug
(dd's cb is emy)
Okay, so after reading so many trip reports, here's my question for those of you who have done your trip ....
How do you keep from crying every minute???
Seems like everyone at GKTW and WDW are sooo nice and just flinging magic all over the place. It is so touching. I'm afraid I'm just going to be (happily) weepy all the time ... and then the whole issue of seeing my kids happy there.
Hmm. Wonder how the shamwow or whatever that tv towel is called, works on tears?
(I read that Hollywood actresses will get botox in their armpits before walking the red carpet, because it keeps them from sweating. Hey, can I get botox in my tear ducts?)
Than it really hits me, and he does this at least once a day. Everyone including the kids and my husband know that I will be in tears from the start of the trip to the end of the trip. And it makes things harder when Jake cries too when he thinks of Disney, he has already told me that he is going to cry as soon as he see's the Wish's fireworks...
I was going to post about being part of the the Big Give( which by the way, I am still in shock and once again very greatful, I never expected it at all...so again THANK YOU..
) and an organaztion called, The Little Heros Project on Jake's Pre trip Again just shocked and greatful that someone is willing to make his trip even more magical. The best part is that when she was 15 she said she use to volunteer at GKTW..so she is pretty excitied to do this. I DO encourage everyone that is planning to trip to Disney to check this site out, if you want to have it on your wish trip, otherwise you can have it done in your home area if you like, but all of the photo sessions are free, and all these photographers are so honored to do this.
) You guys are just too much fun!! 
Oh you beat me too it....
http://www.littlestheroesproject.org/Littlest_Heroes_Project/Home.html
I was given this website by the Child life at the hospital and to be honest I totally forgot all about, kind of wrapped up in the whole MAW trip, and than I read on someone else CB site that they had their session done, and I went back to the website and looked thru. My first thought was I would love to get this done while we are on Jake's Disney trip, how awesome would that be. I contacted them to see if they would even do it, and they said YES. So I looked thru the list of photographers in the orlando area and I found one that I LOVED. And she contacted me and said she had never done a MAW trip before but is honored to do it....
We are still working out the days and such, but those times are perfect. Do you think if I called GKTW they would be helpful? I just want to make sure we do not waste her time.
