Sunday, November 1, 2009

Updates (Day 14)

Amanda got one test that said no bacteria in her system. The more advanced test says there may be bacteria in her system. Hopefully now they can culture her and find out if there is bacteria... and if there is what it is. She seems to be doing well in all other aspects, but still it is disturbing. The Dr. in the walk in area changed her story several times while I talked to her... (she fell apart on cross x.) So hopefully tomorrow Maternal Fetal Medicine will be able to answer our questions.

Bayta is beautiful! I swear she was smiling at me when I held her, but by the time I got the camera out she stopped. She has a lot of hiccups which I will try to find out if that has anything to do with her diaphram surgery or not. Tomorrow is my day to be jerk dad and get some answers for us that we need to have before leaving. The short list includes a letter from her surgeons saying what she can and can't do going forward. I alos want a copy of her medical records before I leave. The have told me several times that it is no big deal to have them electronically delivered, but I want a set just in case. After we check out we won't have a chance to get things done like we have now. There are still some genetic tests I want the results for. I have asked several times for them and I have been told they are likely negative in light of her Pentalogy diagnosis... but I want to make sure we know that before we leave.

On a personal note last night we took off and went to a Blues game with little James and his mother. He is really a neat kid... Before the night was over I confirmed that Amanda and I are NOT hockey fans, but it was a lot of fun. James danced everytime they played music so we were on the jumbotron several times. His mother has been so brave. The other day she told us that James told her not to worry.

Before we left for the game we went back to RMH to do some laundry and eat. THere was a family that provided dinner. I asked her why she volunteered and I was so glad I did. She was there with her two boys. She told me she had a girl who was 9 years old was riding her bike and had an accident. The accident resulted in her daughter being a quadraplegic with no ability to speak. She said she was like me and had no idea what Ronald McDonald House was all about. Once she got her daughter back home she wanted to give back to RMH so once a month she provides dinner for the families staying here. She also has a web site called that actually gives away free helmets to children. She is the third family we have met while here that have had their lives changed in an instant by a head injury. One was from an ATV (well we all know that can be dangerous) the other was from a little girl who fell of a swingset in the back yard. We spend a lot of energy keeping our boys safe... but a swingset? Wow. How many times have my boys been playing on the stairs, jumping on a bed, or swinging in the backyard. It is exhausting to think about how lucky we have been.

Today was the first day without rain since we have been here. It was chilly but nice to get a dose of vitamin D. We plan on staying until 9:00 tonight so we can be here at the weigh in. I will get the lbs and ounces for those of you who have been asking.

Amanda wants to thank everyone for the support, encouragement, advice and especially the prayers.

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