Monday, May 19, 2008

MONDAY, MAY 19, 2008 10:25 AM, CDT

Sam hit a milestone today and weighs 7 pounds 2 ounces!

We really don't have much to tell everyone. The doctors continue to monitor Sam's output so that they can come up with an average fluid intake he will need when he goes home. The are hoping to make thing as simple as possible for us by being able to administer the same amount each day and not have to weigh each diaper to track his fluid loss.

It is a little scary to think about going home soon and having to do all of his care without a nurse or doctor looking over our shoulder to make sure we are doing everything correctly. We have already been told that within a few months we will know more about his care than any doctor we see and will usually have to tell them what to do for him.

If nothing else, Sam has sparked a lot of interest here at the hospital. Everyone we talk to has never heard of this disease until Sam, and as far as anyone here knows this is the first time they have ever seen a case of this at this hospital. Unfortunately that means a lot of unanswered questions for us. I think the doctors cringe a little when we have new questions because we have moved past the ones that they can answer and there is a lot of unknown due to the rarity of this disease. I am sure that it is not a good feeling for them when they have to tell us they don't know the answers to our questions and there will need to be a lot of "try this and see what happens" with Sam.

Monday's are always the most difficult day of the week for us. The weekend at least allow us to all spend time together here in Milwaukee, but tonight Jason will head back to Appleton to go to work, and Ryan will head to Grandma and Gramp's house so he can help keep them sane (or at least keep them from becoming any more insane). It is rough having to go our seperate ways each week and, even with all of the new things we will need to learn and incorporate into our lives, we will be very happy to be home together as a family 7 days a week again soon.

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