Faith's Mom's Blog

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

Some people start their Christmas season the day after Thanksgiving. Not us! We actually wait until about the second week of December, when we go to the Nutcracker, put on by Northern Plains Dance . (Plus, this year, both of us were still recovering from covid in November!) Every year, Faith loves to see her friends perform onstage and visit with them afterward. We have been going to this performance since 2017, and it never ceases to amaze us! It's been so fun to watch the growth of her ballet friends as they take on more challenging parts each year.  Enjoying the Nutcracker for the 6th year in a row!  One new thing that I was able to do this year was go to the Lorie Line Christmas Concert. She has been coming to Bismarck for 30 years and I have always wanted to go, but it has never worked out. This year I was going to try to go with my parents, but then decided not to, as by the time I was going to get tickets, it looked nearly sold out. But then a friend of mine asked if I could

Last week on the 25th, Faith celebrated her 20th birthday, which means she is no longer a teenager! That morning as we drove to her day program, she asked, "Mom how did I get to be 20 so fast?" In some ways, the time has crawled by, but in other ways, it has gone so incredibly fast.  Faith turns 20!  When it came to planning something for her birthday, she told me she didn't want a party. I knew though, that as soon as I didn't plan one, she would change her mind. And that's exactly what happened! A few days before her birthday she was asking me who is coming to her party. I was like, "What party?"  I had decided to just have a small gathering at our apartment. I'm glad I didn't opt for a bigger one at a larger venue, mainly because of the weather. Up until last Wednesday, we had been having the most beautiful fall ever. The colorful leaves were still on the trees and the grass was still green. We had gone to the pumpkin patch on October 19th and