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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Tuesday Tidbits - Faith's Teeth, My Heart

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It's been a while since I've done "Tuesday Tidbits" so today with our wonderful winter weather, I thought it would be the perfect time to put together a brief update. 

I mentioned in a previous post that Faith had gone to the dentist. Well in his words "she has a lot going on in there."  Her two top teeth are trying to come in along with her upper molars. She also has four other teeth that are slightly loose. No wonder she's been a bit cranky lately.

According to Dr. Bryce, she will experience fevers along with a stuffed-up nose, extra mucous, and drooling. He said to give her ibuprofen to help keep the swelling down and ease the discomfort.

I find this especially interesting because when I ask the same questions about the effects of Faith's teeth to her pediatrician, he always says her teeth have nothing to do with these symptoms. I have yet to hear of a pediatrician who says teeth coming in can cause a fever. Why is that?

Faith hanging out at home.

I had an appointment recently, too - my annual echo cardiogram. I was glad to hear that things look great. I think I received some sort of compliment from my cardiologist when he said, "Look at that nice interior vena cava."

I'll be going back in July to do another test on the treadmill to see exactly what my heart can tolerate when it comes to exercise, etc. I don't think I'm alone when it comes to someone with a congenital heart defect in that we're sort of afraid to exercise because we wonder if we are straining our hearts or helping them. 

The cardiologist always says, "Just quit when you think it's too much." That for me is hard to determine since I've always been one to overextend myself.

I do praise God though for the good cardiology report! And speaking of praising God, tomorrow I will be giving my testimony to our local MOPS (Mothers of Preschoolers). I'll be talking about the experience I had after my fourth open heart surgery when I was 26 years old and how God used that event in my life to give me a "Change of Heart" both physically and spiritually.

We are finally looking for an accessible van! So, if anyone knows of a used accessible van that is in good condition - please let us know! We have located one in Williston, but the weather makes it difficult to get up there to look at it.  

Some more exciting news - the local magazine, Inspired Woman, recently held an essay contest where we were to write about Who Inspires You? I didn't win, but they are still going to publish my article, which I wrote about Jacey Enget. Be sure to watch for the May/June edition!

I know I have been talking about our terrible weather, but I must remember that at least we're not experiencing deadly tornadoes as the south is. Please keep all of those who have been affected by these deadly, destructive storms in your thoughts and prayers.

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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...
Read more

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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