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Showing posts from October, 2012

Cerebral Palsy Awareness Month: Reflecting On Our Journey So Far

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Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...
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A Fun-Filled 9th Birthday

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For Faith's birthday this year, we decided to keep it pretty low-key. And even though we really didn't do a whole lot, Faith had a very fun-filled birthday.  On Thursday, she took her favorite snack - goldfish crackers - to school to share with her classmates. Then after school she got to play her new Wheel of Fortune game on the PS3 with daddy. This is what I found when I came home from work that evening: Of course, Faith wanted to play her new game with me, which I very happily did. During all of this we took a little break to talk to Faith's Grandparents from Canada who called to wish her a Happy Birthday. We opened her presents from them while both Grandmother and Grandfather were on speaker phone. Friday evening was another night of playing Wheel of Fortune and then on Saturday, we finally had a chance to have birthday cake, for which Grandma came over. We also opened some cards from her aunties and their families. We've definitely had a great three days of ...
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Parent Teacher Conference

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It is so hard to believe that it is already that time of the year - time for parent-teacher conferences.  I don't know why but I always get a little emotional at these meetings. I think it might be due to the fact that as Faith gets older it becomes more apparent that Faith does not have the same skills as her classmates - and I become very aware of her disability.  In fact, due to a new grading system, Faith is probably going to be graded as a first grader instead of a third grader. But at the same time, I am so proud of Faith for how well she is doing. Faith with one of her instructional aides.  Those around her at school seem to be noticing a difference in her wanting to be at school rather than asking when she can go home. It seems to correspond to the time that I began staying home in the mornings to help her get ready for school.  I'm not exactly why this is because she still fights some mornings about not wanting to go to school but I'm glad to know that o...
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October 4, 2003: A Day I'll Never Forget

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It's hard to believe that it was nine years ago today I was taken by air-ambulance from the hospital in Williston to the Mayo Clinic in Rochester Minnesota. Faith was very unexpectedly trying to make her way into the world 14 weeks early.  The doctors and staff in Williston knew they did not have the expertise in dealing with a mom with a complex heart condition having a baby born so prematurely. I had been planning on having Faith in Rochester but not this soon! After all, my due date wasn't until January 6th. After getting to Rochester, I was in the hospital for five days hooked up to a baby monitor. Faith seemed to be doing well and I was no longer going into preterm labor. Although I wanted to just go back home, the doctors thought it would be wise for me to stick around Rochester, just in case. The Travel Lodge became my temporary home.   Faith in the NICU in Rochester, Minnesota where she was born Rob had been going back and forth between Rochester and Watfo...
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