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Showing posts from April, 2022

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...

Historic Blizzard Keeps Us Stuck Inside All Week

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A snowy Century Avenue Last Tuesday at this time, most of North Dakota was getting blasted with a historic blizzard that lasted 3 days. We have experienced blizzards before, but this was probably the worst most people in the state had ever gone through. For me, it brought back memories of the catastrophic blizzard that occurred at the beginning of April in 1997. At that time, I lived in Fargo.  What made that storm so bad is that many parts of the state had already received 100 inches of snow throughout the winter. That wasn't the case this year, as the central and western parts of the state have had severe drought conditions. While most people were thankful for the moisture this blizzard brought, it didn't come without its challenges (especially for the ranchers who were in the midst of calving). The good news is the storm was not unexpected. As a result, people could make preparations in advance. The most I needed to do to prepare was make sure we had plenty of groceries and...

Our First-Ever Sister Weekend Getaway!

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Just recently I was able to go away for the weekend - for fun! For the first time in 18 years, I was able to travel to another city, stay overnight, and not have any doctor's appointments or procedures. And what made it even better was going with my sisters!  Faith was well-looked after by respite care. She even had a friend come over to visit and her grandparents, too! Of course, getting away did not come without a challenge or two.  The day before leaving, as I was cleaning the entire apartment and getting ready to pack, a staff member at Faith's day program told me her feeding pump was not working. I only had an hour before I had to pick her up so I cruised down to our DME provider and asked if I could get a loaner pump since hers was not working.  Unfortunately, they no longer carried the type of feeding pump she uses, so I needed to get a whole new system. This required me to learn how to use it and then make sure Faith's respite staff and her day program staff was g...