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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Growing Girl

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Everywhere we go, people who know Faith comment, "I can't believe how much she's grown this summer." We can't believe it either! We just weighed her the other day, and she weighs 48 pounds. 48 pounds!! 

That's so unbelievable to me as her weight has been an issue for so long but finally, she is starting to fill out more and she even has a roll in her tummy! I also tried to measure her while she was lying down and as far as I could tell, she's about 47 inches tall - almost four feet!

It won't be long before she doesn't fit in this swing anymore!

Rob and I have had to make adjustments in the way that we carry her and bring her from room to room. We have to remember her legs are longer, so we have to sort of turn sideways when we carry her into the bathroom or into her room. Every once in a while, we forget how long she is and bump her feet on the wall or the doorway. This summer we have had to adjust her chair and need to adjust her stander as well.

Just out of curiosity I looked in my baby book to see what my measurements were when I was her age. When I was seven, I only weighed 45 pounds. I was scrawny due to my heart condition. But I was taller than Faith - I was 49 inches tall which made me look really skinny.

While I am thankful Faith is growing, it forces me to think about our future when I may not be able to lift her at all. My cardiologist told me at one time I should probably not lift her when she gets to be 60 pounds or so. At one time 60 pounds seemed a long way off, but not anymore! 

I need to remember to take it one day at a time and to replace anxiety with prayer. God has given me so much strength to enable me to look after my daughter. I know he will continue to give me the strength I need as my daughter continues to be a growing girl.

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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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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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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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