Ramona Mae

I’ve had a rough day today, so has Ramona. I guess I had it in my head that bringing Ramona home was going to be some kind of a Utopia. On the plus side, not driving back and forth is nice. On the minus side, everything else.
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Many of you are starting to get “ants in your pants” wondering and waiting for news. Ramona is home with Andy, Jane and Simon. While this is joyous news it is also a very difficult transition so keep up those prayers! More updates to come…

I got a lot of calls today from folks saying, “Hey, I read your last blog entry, I hope I haven’t said anything to offend you”. Don’t worry, it wasn’t you! Even if it was you, don’t worry.
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We’re all excited, we’ve got all the gear, we’ve got our makeshift hospital room all set. Now all we need is the baby.
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Excuse the levity, but I’m in a mood.
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Well, we’re hoping that tomorrow will finally be discharge day! We’re coordinating the delivery of an oxygen machine, portable oxygen, pulse-ox monitor and NG tube supplies. I’m getting her room ready, trying to make sure that everything is in the right place. It’s kind of exciting and reminds me of bringing her home from the hospital for the first time.
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Simon was up a lot last night. He’s usually a solid 12 hour night sleeper. As I tossed and turned, listening to him fuss and deciding whether or not to go to him, I had myself convinced that he was suffering terribly from our recent absences. Wrong again.
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I have always felt proud of our son Simon. Proud of the way he charms people. Proud of the way he wakes up each day ready to go, go, go!
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We were further devastated to learn this morning that Ramona has a chromosomal syndrome. Although what this will mean from her is unclear, it does carry with it some risks for immune system problems, mental retardation and palate abnormalities among other things. It is also possible that she would show no further symptoms beyond her heart defect.
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Well the doctors told us at rounds this morning that Ramona will come home tomorrrow! We’re thrilled, proud and terrified.
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