Faith's Mom's Blog

Did you know there are 1 million people in the United States who have cerebral palsy? I guess that means Faith truly is one in a million!  Faith was diagnosed with cerebral palsy when she was six months old. Prior to that, she had been given the diagnosis of Periventricular Leukomalacia  (PVL). During her premature birth, there was a lack of oxygen to her brain, which resulted in damage to the white matter, or inner part of her brain.  I will never forget receiving that news. Faith's Dad and I were told that nobody knew what the long-term effects of PVL would look like for her. All I could do was stare at my tiny daughter lying in her isolette, hooked up to all kinds of tubes and lines, and choose to believe she would be okay.  Faith in the NICU a few days after she was born. After over 70 days in the NICU, we finally took her home to Watford City. There, she would receive regular visits from an Early Intervention team who would assess her and ensure that she met al...

February started out as it typically does: very cold! This year, my parents and sister braved the weather to have a small get together for my birthday. Faith thought I needed another party like I had last year, but I told her 51 just wasn't as exciting! She also asked if her Auntie Tesa was going to fly up again.  Faith really does love a good party!  Accurate!  Dawn, Faith, and Me Dad practicing holding his arm for after shoulder surgery The next day, my parents took me to IHOP , which had recently opened here in Bismarck, but I hadn't had a chance to go yet. It did not disappoint. My pancakes, eggs, hashbrowns and coffee were all perfect!  I was glad to have gotten this meal in with my parents as two days later, my dad would be going through shoulder replacement surgery. We were all expecting him to be in and out on the same day, which is exactly what happened a couple of years ago when he had knee replacement surgery.  I, along with my siblings, was shocked t...

Remember David Letterman's Top 10 lists? That was back in the day when late night TV was actually funny! This was also when music was really great, and I faithfully listened to the Top 40 countdown every Saturday. And around New Years, the DJ would play the top songs of the year!  I guess thinking about these things inspired me to come up with my own list. As a final nod to 2024, I looked back at all the posts I have ever written and have listed the ones that had the most views this past year. I found it interesting that posts I have written long ago were still being read in 2024!   10. Goodbye to Our Special Tomato Adaptive Car Seat  Faith at the age of 9 in her adaptive car seat. This post from 2012 describes how Faith had finally outgrown the adaptive car seat she needed when we did not have an accessible van. The car seat fit in the backseat of my Hyundai Elantra. The adaptive car seat was great, but I don't miss the days of picking her up out of her chair and pu...

We are currently on day four with no working elevator in our apartment building, one that it is supposed to be handicapped-accessible. It has been a little frustrating to say the least. It was supposed to be fixed on Wednesday afternoon, but we are still waiting. No working elevator in this apartment building It has been going out off and on recently, but just once, it was a major inconvenience. We were getting Faith ready to go to school and realized the elevator was not working. Needless to say, she was late for school that day. This time we discovered the elevator was out on Monday after we called the Healing Rooms and realized they were open. We gleefully got bundled up in our winter attire - even the below-zero temperature was not going to stop us. We ran into a major disappointment though when we got to the elevator and realized it wasn't working. We went back to our apartment and figured out what to do next. We thought about having the Healing Rooms come to us becau...

I thought it would be interesting to see what blog posts in 2012 had the most views. I was a little surprised by the post that was visited the most. I was also very proud that the guest post written by my father-in-law made the top 12, in fact it almost made number one! I had a big surge of views during the month of December. In fact, four of the posts I put up that month ended up getting more page views than the posts I had written at the beginning and middle of 2012. I wrote 42 posts during 2012 and here are Faith's Mom's Blog top 12 of 2012: Number 12 - Good News About Faith's Hips publish date: 2-25-12 It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket! Read More Number 11 - Conscious Sedation - A New Exper...

As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. For just a $150 donation, a pediatric wheelchair can be given to a child in a third-world country It is truly heartbreaking that these children who have no means of mobility are left home to lie in bed all day while their parents go to work. These children cannot attend school because they have no way of being transported or even the ability to sit up while at school. Some children who may have use of their upper bodies crawl on the ground to get from one place to another. The worst part for these families is that they are looked down upon for having a child with special needs. Sometimes the father leave...

Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions, and many other activities. It also helped us through our time of not being able to afford an accessible van. Like all adaptive equipment , the special car seat was expensive and although it is the law that a child is secured in a car seat while traveling in a vehicle, neither health insurance nor Medicaid would pay for it.  Thankfully, we were able to receive funds from the fundraiser, the Great American Bike Race ( GABR ) which helps families pay for services and equipment that insurance doesn't cover for kids with cerebral palsy and related disabilities.  After doing research on the Internet and talking to Faith's physical and occupational therapists, we decided to go for the Special Tomato adaptive car seat. You would think something with that name would b...

All week long, the clinic that Faith goes to has been holding pediatric therapy sessions in a handicapped-accessible park called Magical Moments. Of course, when this was being planned, the weather was going to be a key factor. It turned out to be a beautiful week - perfect for playing in the park.  Yesterday, Faith got in her gait trainer like any normal physical therapy session but this time instead of walking down a hallway, she got to walk up some ramps that eventually led to some slides. It was harder than normal because these ramps were at a slight incline, and she has never walked uphill before. She worked so hard, and as a reward, she got to go down the green slide with her physical therapist. She was all smiles! Faith giving it all she's got Keep going Faith! Faith made it to the slide! Going down the slide! When we lived on 7th street, we used to take Faith to this park quite a bit because of the special wheelchair swing it had. The swing is now new an...

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, we knew that one day our family would need an accessible van.  Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR . Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting. Here is the seating system in the passenger seat of our small car. The base fit in the trunk. Faith in her adaptive car seat - her legs and feet are kind of squished After her chair was upg...