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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A Tough Week Filled with Birthday Blessings

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This has been a tough week with me and Faith both having colds and not feeling so well. Of course, it doesn't help that when Faith isn't feeling well, she just can't sleep. After three nights of not sleeping well, I am pretty much in zombie mode. 

Yesterday, we did take Faith to the walk-in clinic, and she was tested for strep, which she doesn't have. The doctor didn't think it was a sinus infection, so I guess we have to wait to see if she gets better.

Besides health issues, a good friend of mine lost her oldest brother (oldest of 10) in an accident. He was shoveling snow off of the roof of a barn and he ended up falling through the roof and died as a result. He is survived by his parents, his wife and seven kids, nine siblings and lots of nieces and nephews. My friend and her whole family have been heavy on my heart all week. 

In the midst of the tough events of the week, I feel extremely blessed to have my family and many dear friends. I also feel blessed to live to be 37 years old. This may sound strange but when I was diagnosed with such a serious heart condition, my parents were told by doctors that I probably wouldn't live to the age of 2. 

After I lived past 2 then it was 4. There was always this sort of death sentence hanging over my head. Thanks to the healing hand of God, along with advances in pediatric cardiology, I am still here today and plan to be for many more birthdays!

A spontaneous birthday celebration following supper at Texas Roadhouse.

My yummy birthday cake from Cold Stone. (Thanks Todd and Barbara!)
Faith looking a little sleepy as her bedtime nears

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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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