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...
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Making Adjustments as Faith Grows

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Faith is growing. It's been two years this month that she has had her current wheelchair and now it's time for some major adjustments. Since first getting her chair, she has probably grown five inches in her trunk alone. She's ready for a new seat and a new backrest and also a new harness.

Another thing she is growing out of is the orthotics she wears on her feet. Soon, she'll be fitted for a new pair. In the meantime, she had some extensions put on so that her toes wouldn't be sticking out of them!

She's also ready for the next size up in diapers, but oops! They don't make anything bigger than a size six, so we've been trying out some extra small children's briefs that seem to fit her well. 

I must say, I would love to see the day she no longer has to wear any type of diaper or brief and this summer might be a good time to see if she can be potty trained. I know of other kids with cp who were trained around 8 years old. Hopefully her muscles will be able to cooperate and will have control in that area. That would be so nice, and I know Faith would feel like such a big girl!

Although there are some adjustments that need to be made, I'm so thankful for my growing girl!

Faith at the age of three in her very first chair - her Kid Kart
Faith in her new chair when she was five. Doesn't it look big for her!
Look how big she is in her chair now!

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Faith's Adaptive Skiing Adventure

-
Image
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...
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An Unforgettable February!

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February started out as it typically does: very cold! This year, my parents and sister braved the weather to have a small get together for my birthday. Faith thought I needed another party like I had last year, but I told her 51 just wasn't as exciting! She also asked if her Auntie Tesa was going to fly up again.  Faith really does love a good party!  Accurate!  Dawn, Faith, and Me Dad practicing holding his arm for after shoulder surgery The next day, my parents took me to IHOP , which had recently opened here in Bismarck, but I hadn't had a chance to go yet. It did not disappoint. My pancakes, eggs, hashbrowns and coffee were all perfect!  I was glad to have gotten this meal in with my parents as two days later, my dad would be going through shoulder replacement surgery. We were all expecting him to be in and out on the same day, which is exactly what happened a couple of years ago when he had knee replacement surgery.  I, along with my siblings, was shocked t...
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Adults Living with Congenital Heart Defects (CHD)

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We are right in the middle of Congenital Hearts Defect (CHD) Awareness Week, which runs from February 7th through 14th. I am glad to see so many posts on social media to help draw awareness! Many of those posts center around children with CHD, which is good as heart defects are the most common birth defect in the United States. But many people are unaware of how CHD affects adults. Hence, this blog post!  In 2010, there were 1.4 million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult. Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago. February 7-14th is CHD Awar...
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Faith's 4 Year Day Program Anniversary

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This past week marked a huge milestone in Faith's life - she has been at her day program for 4 years! I well remember how excited I felt when I found out that in order to qualify for the program, all she needed was to be 18 and have a high school diploma.  I know that is not the case in some states. And in many cases, parents choose to have their special needs child in school until they are 21 and then after that they can attend a day program. For Faith though, since I homeschooled her, we were both ready for her to move on to her adult life when she turned 18!  Faith at the Science Center with one of her day program staff  After a few meetings with her case manager and day program staff, she was ready for her first day. But was I? She was excited when I dropped her off, but as I drove away from the building, I began to cry. Would she really be okay here? Would staff know what to do if she looked uncomfortable or seemed like she was in pain? Faith is verbal, but she canno...
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