Faith's Mom's Blog

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...

Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already. Faith at the Sock Hop at her day program   The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She is a bright light and full of joy wherever she goes. She is also full of encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July! Big Event #1: Our First Baseball Game The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity ...

Today I thought it was quite fitting that on my one year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month.  Thankfully, my cardiologist from Mayo comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there! I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after F...