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 ...

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...

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 ...

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.   Faith is all smiles about her new van! Faith is ready to roll! After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around.  She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever!  Faith inside the van. Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith...

Back in August of 2011, we got our first accessible van. Before that, we had a purple adaptive car seat called the "Special Tomato." Eventually she got too big for her that, and we needed to upgrade to an accessible van. We were thankful to have found one in Bismarck for a decent price. While it suited our needs, there were still some concerns. For one, the electrical system was really wonky, which affected the ramp.  Even with the weird electrical system, it got us to where we needed to go. We even had some fun family adventures like driving all the way to Toronto and back, and also to Winnipeg. The van also got us to some of Faith's medical appointments in Minneapolis and Fargo. Despite its quirks, the 2006 Dodge Caravan was a good van. Except for when it rained. It seemed the electrical system went super berserk during rainy weather. One day we were on our way home from a physical therapy appointment in the pouring rain.  We were driving down Century Avenue (one of t...