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IVIG and realizing normal doesn't mean normal

Posted Apr 14 2010 5:59am
Miss Haven had IVIG today. She was at the hospital and hooked up by 9am. Some reason this dose really wore her out. She slept most of the visit at the hospital. But she did a great job with her port.

We did talk to the doctor about some of our concerns and although everything is going well with Haven and her treatments have worked amazingly Dad and I are still stuck with this number in our head that one of Haven's doctors threw out there. Age 7 - the number given due to elimination of symptoms that Haven will stop breathing on her own. With only 8 months to go we are more and more nervous. But then we were reminded yesterday - this age was given due to her symptoms at the time and average age of onset of respiratory failure and it was BEFORE she did any treatments. They have hope that this has helped her and she won't go in to respiratory failure. So this helped to remind us to let it go to the back of our heads and let her live life.

We had her set up to skype with her grandpa in Utah but with chemo and homework she passed out. We barely made it through homework with her eyes open.

Something that made me a bit sad and made me realize that our version of "normal" really isn't normal. Haven had her first day of school on Tuesday and although she had fun she wasn't very comfortable with the kids. It will take time. But that evening Haven came to me all excited and saying how she couldn't wait to go to chemo and see all her nurses and doctors and friends. That she missed being at chemo. This is Haven's comfort zone and this is what she knows as normal.

I also made a scrapbook for her school that from our "normal" point of view it's cute and sweet and highlights what she has gone through. But I guess when you are a teacher that is going to present it to a class of kids it's a bit much and not normal. But I think this is dad and my warped sense of normal too.

It is hard for a person that hasn't dealt with any of this to understand a family that has or is going through this and what they consider normal. But I don't think we comprehend what life is supposed to be like when you're normal either. And that's just fine with us.
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