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Showing posts from January, 2012

Faith's Adaptive Skiing Adventure

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I am usually all for Faith trying something new. Years ago, though, I drew the line at adaptive skiing. I knew that Dreams in Motion does an annual event at Huff Hills (North Dakota's largest ski area), but I was too afraid to let Faith try it. I just didn't know how she would do being strapped down so tightly, especially with her high tone and issues with her left hip.  At her day program, some of her friends had been going for years and Faith thought it sounded like so much fun. So, this year, I decided we should give it a try. Since there are only 20 spots available for this event, I got her registered the morning it opened up.  Lots of fresh powder at Huff Hills  As the event drew near, I knew I needed to get snow pants for her (since she had none) and make sure I had all the right winter apparel to keep her warm. That was also one of my biggest concerns is her getting too cold, which can cause her tone to increase even more.  As the day approached, she was...

Conscious Sedation - A New Experience for Our Brave Girl

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I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her Botox shots. I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So, there I was this morning at work wanting to be with Faith and praying that all would go well. Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm. Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got Botox was very good for her. In the past during her Botox ...

Saying Goodbye...Again

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Last month, we had a sad surprise - that Brittnee, a respite care worker who has been with us for a year and a half, was leaving. Once again, it was time to say goodbye to someone who had become like a part of the family.  It's hard when these respite care girls leave, although it is completely understandable. More often than not, they are college-aged and in serious relationships which lead to engagement and then marriage. There have been three wonderful girls we have gotten the privilege of knowing through respite care services. And I am continually impressed with their maturity, professionalism and most of all, their great care-taking skills with Faith. While it is hard for us to see them go, it is great that there is e-mail, Facebook and even Skype so we can keep in touch. With all of today's technology it makes the goodbye seem not so final. So, to our amazing young ladies who we are blessed to know through respite care - we wish you the best in al...