Faith's Mom's Blog

One of the reasons I look forward to summer is to finally feel the warmth of the sun. Oftentimes spring in North Dakota is a little on the chilly side, and we still have to don our jackets, and sometimes even our boots, depending on how much snow is on the ground. We were blessed this year with a beautiful summer that began in May. We ended up getting lots of rain, so it remained nice and green the entire season.  This summer kicked off with a visit to auntie Dawn's. She had just bought a new house, and Faith couldn't wait to go visit her. Dawn has a really nice back yard, and it ended up being a nice day to just hang out on her back porch!  Faith and Dawn hanging out!  As June rolled around, we made a trip to the zoo, which we hadn't been to in a couple of years. It was nice to walk around in the sunshine, but we noticed the animals weren't really that active. All Faith really wanted to do anyway is take a train ride.  Instead of looking at the animals, though, she kep

I'm tired today. And a bit stressed. I've been dealing with trying to get approved to go to Mayo to get my pacemaker replaced and it hasn't been fun. But today I'm also thinking about how it was 50 years ago today that I had my first open heart surgery. It was called a Waterston shunt and was supposed to improve blood flow and cyanosis. It didn't help my cyanosis much, though because I still had blue lips and fingernails afterward.  Me as a baby with my parents and brother.  Me at 5 1/2 months old, 2 weeks before my first open heart surgery.  It's amazing that my parents were even able to navigate the medical world at that time. They lived in rural Montana and then western North Dakota. Somehow, they managed to find a pediatric cardiologist in Bismarck who referred them to the University of Minnesota. Up until I had a heart catheterization, they had no idea what was going on with my heart.  The doctors just thought that I had a hole in my heart, which is why I w

Previously, I wrote about how we have had some challenges this year with Faith's health. Those challenges persisted as she came down with influenza B, which turned into RSV. As a result, she missed two wheelchair dance practices and the performance. She was very sad about it, but I was proud of her for how well she handled her disappointment. She had fun watching the video and said she was "imagining herself being a part of the performance!" Along with missing that, she missed two weeks of therapy and 6 days of her day program.  At the Belle Mehus for "Snow White" (photo by Millie Hyatt)  Last week, she finally got back to somewhat of a normal schedule, going to therapy and half-days at her day program. Thankfully, she had fully recovered so she didn't have to miss going to "Snow White," the spring performance put on by Northern Plains Dance .  She's always so happy to go to these shows, not just for the entertainment factor, but to see her bal

This year has certainly been a mix of blessings and challenges. Faith kicked off the New Year by getting another UTI. Along with that, she somehow managed to break a bone in her wrist and had increased anxiety due to some staff changes at her day program.  Also, she had gotten a new chair last August and we've already had to make numerous repairs and adjustments. All of these things have resulted in many extra appointments with doctors and specialists, including a urologist, orthopedist, psychiatric nurse practitioner, and DME technician.  Thankfully, the broken bone in her wrist healed on its own! We also got some good news that the slight curve in her spine has not gotten any worse and she doesn't seem to be having any pain in her back or hips.  We still don't have answers for the recurrent UTIs, and she is recovering from another one as I write this. I have tried a few different supplements to prevent them but haven't found the right one yet.  Hitting a huge mileston