Faith's Mom's Blog

This past weekend, Faith and I both got to experience the  Medora Musical  together - for the first time ever! We went with my dad and sister. The singing and dancing definitely met our expectations. After the National Anthem, some of the first songs they sang included, "Let's Hear it for the Boy" and "Dancing on the Ceiling." Both songs were a great and energetic way to start the show.  Faith was super excited, nearly dancing out of her chair! One reason she could hardly contain her excitement was that a few of the performers (Adam and Taylor) go to our church! The storytelling in between the musical numbers described how the little "cow town" of Medora came to be, as well as the influence that Theodore Roosevelt had in North Dakota.  View from our seats! Close up of the performers.  Auntie Dawn and Grandpa During the song, "Paint Your Dreams Across the Sky" by Dolly Parton, the cast invited the children to join them onstage. I wasn't ex...

Faith and I had the best 4th of July ever! We started the day bright and early to go to the parade in Mandan. We haven't been there for many years, so I was surprised that she wanted to go. I think maybe it was because she heard everyone at her day program talking about it and making their own plans.  Faith's grandpa went along with us, as well as her auntie Dawn (my youngest sister). Thanks to Dawn's connections with people who live in Mandan, we were able to park the van at her friend's house and then he drove us down to Main Street. Then, thanks to another friend of hers, we were able to enjoy the parade underneath a canopy right in the front row. I could not be more grateful to her friends for making it such so convenient for us! One reason I was glad not to go to the parade in the past, was all the planning, parking, and walking it takes, not to mention sitting in the sun for almost 3 hours! Someone might wonder why it takes all that just to go to a parade. Mandan ...

Faith loves going to plays, musicals, ballet performances, and other events in which her friends perform. When she was younger, I thought attending these things would be too overwhelming for her as she has a strong startle reflex. Usually, it's loud sudden noises that trigger a strong startle response. I figured out though, that as long as the noise is constant, and she knows what to expect, she actually does very well. When I found out that Dreams in Motion was doing wheelchair dance again this year, I figured she would want to do it. When I asked, she enthusiastically said, "YES!"  She was so excited to go to her first practice. She told everyone she saw that she was going to be in a dance performance! During practice, we found out the theme was Encanto (which we have never seen). They were going to be dancing to a medley of songs from the movie. There were about a dozen participants, some with manual wheelchairs and others with powerchairs.  During practice, each of ...

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized.  Day 1: Thursday - the Procedure  Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine.  I stressed the importance of giving her anti-nausea medication before the procedure bec...

Yes, it's true that Faith has been celebrating her birthday ever since last week! I mean, a girl only turns 19 once, right? And this is the last official year of her being a teenager! Last Tuesday when she woke up she said, "I can't believe I'm 19 already!" She was super excited because not only was it her birthday but it was Tie-Dye Tuesday at her day program and she was bringing cupcakes to all her friends there!  During the drive to Mandan, she asked if she was going to get any flowers for her birthday. I kept telling her I really didn't know. (She is still upset with me for throwing out the flowers that her cousins had gotten her in May for her graduation.)  I wasn't planning on getting her flowers, but I was pretty sure she would get at least one bouquet. She had a blast at her day program and on the way home she said she couldn't wait to see the apartment (she knew I was going to put up decorations for her.)  She was so excited to come through th...