10-20-10 9pm

So following more discussions between the GI specialist, our pediatrician, the cardiologist, and a surgeon over at Egleston hospital - it looks as though our little flower will probably get her G Tube inserted and stomach valve tightened at the beginning of next week. They have the OR available for the surgery on Monday now, but they need room in the NICU that is over there and we don't know if they have a bed available for Monday or not.

While this made us very excited that Riley was going to start progressing in her fight against her issues, this simple statement by her doctor made me stop in my tracks - they don't have any beds available for recovery at this pediatric surgical unit. It saddens me to no end to realize that other families are going through things that could possibly be much worse then what our little one has - or even simple procedures. It seems such a difficult and sad way to come into this world - I want so much for us and the other families to be able to celebrate our newest additions, but some won't ever get to do that and that thought crosses my mind at least once a day. No matter the battles that Riley has to face, she will come home with us, she might have pieces of her that are slightly broken at the moment, but some babies never even get the chance to be broken. For those families my heart breaks.

Riley had a great day today - she seems to be responding well to the feeding tube in her nose instead of her mouth. She has a lot of mucus, but supposedly this is normal. She slept a lot today and she needs that to grow and get stronger. When she was awake, she has a new half smile that she likes to give me and I cherish every second that I see it - her and I enjoy staring at each other for as long as she can keep her eyes open. She also seems to be responding well to the diarrhetic as she continues to poop like a greyhound before a run.

Zoey seems to be having a tough time with it as she had a couple of decent crying fits about nothing the last couple of days. Michele and I continue to talk to her about Riley in an honest way and tell her everything that we know in a non-technical manner. I don't know how else to be with my oldest daughter, I have never stretched the truth or made something up for her (you know, except Santa or how well the Red Sox are doing - she doesn't like them losing any more then I do), I have always tried to give her facts and let her ask lots of questions. I hope we are doing the right thing as she is very smart. In some great news for Zoey - we kicked the ball around in the backyard last night and she can dribble the soccer ball with both feet while running. She is totally going to be better then Mia Hamm.

Michele heard back from the Southeaster Center of Excellence (a 22q deletion syndrome group in Atlanta) and she had a great talk with one of the 3 woman who run it. There is a family that they know of here in Alpharetta that we may get to talk with soon. Also, the woman that Michele talked to has a 9 year old little girl with the syndrome and she took a little longer to accomplish some things and had immunity issues growing up, but otherwise is just like her other 2 children without the syndrome. So hopefully once our little flower gets over her first couple of years of issues, she can start focusing on getting into Harvard so she can become the preeminent researcher on this awful thing that she has.

Thanks again for the well wishes.