Kylie with.....Kylie!

So today was the day we got to go to U of M for answers. I like answers, answers mean information and information means a plan. I can handle almost any situation as long as I have information and something to think on, so I can make a decision. I was hoping to get some of that information today at the hospital. I knew it wasn't going to be all the information, I didn't even know if they were going to keep us or not. I just thought I would have something. Well we got something all right...
Let me back up and start from the beginning of today. We arrived at the hospital, each with a change of clothes and toiletries, just in case. We had a habit of carrying, what we affectionately called "OH CRAP" bags in our cars, when Kylie was first born. They were bags that had a change of clothes and a few things that we would need if we needed to go to the hospital at a moments notice. As things have calmed down, we got out of the habit of carrying them. Well, with all the fun that we have had, sarcastic tone, and with all the uncertainty of what was going on, we started caring them again. So we were ready, just in case. Also, with us, it seems like life has a sense of humor and we knew that if we had them...we wouldn't need them, but if we didn't, we would :-). Well, we get there and are escorted to an ultrasound to see where the best place to get a sample of fluid and then we get to speak to a doctor about what is going to happen, right then and there and afterwards. The plan is, if it is Kylis drainage, the fatty fluid from the lymph vessels, they would keep her and see about getting the most out of her and then we would take it from there. If it weren't, they would take what they could and send it off for testing and we would know in 3-5 days. Kylis was the forerunner, we have had it before and, granted I know this isn't a diagnostic test, it would be one of the easiest to fix. Also it would be one of the most recognizable. Kylis has the look and consistancy of skim milk, so if they pulled white fluid off of her, we had it nailed. So the docs took her and Aubrey and I had to wait. I am not a big fan of waiting, I HATE waiting. I am the guy you see in front of microvawe tapping my fingers impatiently. Sorry, I am working on it...I have been thinking about watching paint dry, to help train myself...but I am not patient enough to stand in lines to buy it :-). Anyways, the doctor come back after about an hour and a half and I see that he was a plastic bag with a speciman jar in it, it's Kylie fluid. Well, I am like SHOW ME WHITE AND MILKY and was it? Was it the Kylis drainage, the seemingly most obvious choice that it could be? Come on, have you met my daughter ( you should, she's adorable!)? She never does anything the way she is supposed to. The liquid is the color of apple juice not a white speck in there. So now we know two things...1) it's not Kylis drainage and 2) we have to wait to get the answers (refer back to preivous comment on waiting). So I am getting info, just not the kind I want and none of it was helpful right now. You see we really have no idea what this could be. Until that fluid comes back we are flying blind. It could be anything from malnutrition (which I doubt, if you have seen my daughter eat you would know why) to liver failure and cancer. Her blood work up looks good, so that is a blessing. Oh and another cherry on this fun little sundae like I call my daughter's medical condition, there is no guarantee that the fluid will come back with ANYTHING at all. If that is the case our next steps would be liver biopsy and exploratory surgery. So we were sent home having to wait for the culture to grow and the tests to be performed. We can have perliminaries as early as tommrow, but nothing real concrete till, at least, the middle of next week.
The trip had some real fun moments as well. Kylie got to see the poster of herself. It was really kind of neat to watch her look at herself. The only issue we ran into was when Kylie noticed the crown that Kylie was wearing (is that confusing to anyone else :-)) and then was asking to wear it herself. That took a little explaining :-). The Stamm's...Kristen, Mike, and Cayman

We also got to see some friends that we hadn't seen in a while, the Stamm's. We met them, when Kylie was first born and we were new to U of M and the special needs child family. They were kind enough to come up and visit with us and get us acquainted to everything. They were a blessing to us. Well, Cayman had been having some issues and they had a really intense couple of days and they are up in the hospital making sure Cayman is alright. Please pray for them, they were a God send to us.
I have been dwelling on something these last few days. I have been dwelling on the ownership of Kylie. Ever since she was born I have seen her as my daughter, which she is, but I have been coming to the realization that I really don't own her. The idea of her being first and foremost God's daughter and that He has entrusted her to me has been permeating my thoughts. It seems to change the way I look at her, changes our relationship. Like I am preparing her to live a Godly life. I am her earthly father but God being her heavenly father is so better equipped to handle her and when I focus on that it gives me a bit more peace than what I usually have. Like, I know she is in good hands. Not sure where all this is going, but something I felt that I should share. Love to you all.

Also...someone give me a reality check, sometimes I get the feeling that I may be complaing in these. I don't want to come across as whinning or complaining. I want these to be fun and informative. We do need your prayers and I want to be honest but I want the tone of the blog to be one of goodness. Feel free to be honest with me :-).