Faith's Mom's Blog

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 to school 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 fa

This season is known as the most wonderful time of the year and probably the busiest time of the year as well. Along with starting Christmas shopping, putting up our tree and thinking about getting our Christmas cards ready, we have taken part in some great Christmas events. Faith checking out some of the ornaments on our Christmas tree! Last Monday we kicked off the week with Faith's program at school called "Old Man Winter's Icicle Follies." Faith's music teacher had given us a CD with all of the music on it so Faith could learn the words better. And I must say, when Rob and I both heard the fast-moving music with all of the tongue-twisting words, we both thought the songs were a little ambitious for third graders. Wow were we surprised when they pulled it off! All of the third-graders did great!  The best part was seeing Faith in the front of the gymnasium alongside the kids in her grade looking relaxed and singing right along with the rest of them. Alth

It seems we have won the battle over Faith getting up and getting ready for school in the mornings. She is no longer protesting and wakes up in the morning excited to bring a "special guest" to school. Last week she pretended to get Clifford the Big Red dog ready for school but he couldn't fit in our van so he had to ride on top. She also talks about how when she gets to school she is going to help take care of one of her friends who is also in a wheelchair. Faith has been doing great getting up and ready for school in the mornings! A few things are helping Faith with her morning routine. One she is getting more rest and not feeling so fatigued throughout the week as she is only going half-days on Tuesdays and Thursdays. Another is that we have been feeding her Pediasure with 1.5 times more calories that what she has gotten before. This is helping with both her energy and her weight. Rob took her in to get weighed last week and she has gained almost a pound since get

It is so hard to believe that it is already that time of the year - time for parent-teacher conferences.  I don't know why but I always get a little emotional at these meetings. I think it might be due to the fact that as Faith gets older it becomes more apparent that Faith does not have the same skills as her classmates - and I become very aware of her disability. In fact, due to a new grading system, Faith is probably going to be graded as a first grader instead of a third grader. But at the same time I am so proud of Faith for how well she is doing. Faith at school with her dad. Those around her at school seem to be noticing a difference in her wanting to be at school rather than asking when she can go home. It seems to correspond to the time that I began staying home in the mornings to help her get ready for school.  I'm not exactly why this is because she still fights some mornings about not wanting to go to school but I'm glad to know that once she gets there

It's hard to believe that it was nine years ago today I was taken by air-ambulance from the hospital in Williston to the Mayo Clinic in Rochester Minnesota. Faith was very unexpectedly trying to make her way into the world 14 weeks early. The doctors and staff in Williston knew they did not have the expertise in dealing with a mom with a complex heart condition having a baby born so prematurely. I had been planning on having Faith in Rochester but not this soon! After all, my due date wasn't until January 6th. After getting to Rochester, I was in the hospital for five days hooked up to a baby monitor. Faith seemed to be doing well and I was no longer going into preterm labor. Although I wanted to just go back home, the doctors thought it would be wise for me to stick around Rochester, just in case. The TravelLodge became my temporary home. Faith in the NICU in Rochester, Minnesota where she was born Rob had been going back and forth between Rochester and Watford City. An

Last year at this time, I was a stay-at-home mom. And part of my stay-at-home mom duties were getting Faith ready for school in the mornings and getting her there on time. I was also the one who was in constant contact with her teacher, her instructional aides and her therapists. Part of the fun of taking Faith to school was getting a chance to visit with those who looked after her throughout the day.   After coming home from dropping Faith off, I would have breakfast and enjoy some quiet time. At least once or twice a week, I would call my friend Tina or she would call me and we would talk for at least an hour. Being home gave me a chance to work on my writing, to join a morning women's bible study, to take a nap if we had a rough night or cook and clean at my leisure. It was nice being a stay-at-home mom. But I did find that if I didn't get out of the house, I would go a little stir-crazy. Another great stay-at-home-mom duty was to join Faith on her fun field trips! Eve

Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump . We felt this was the right decision and that Faith would benefit if the pump helped to decrease her tone. After making the decision, Rob sat down with Faith and explained to her that she was going to be getting something called a baclofen pump and that she was going to have to be in the hospital. She of course, was not too happy about this news and every now and then she would let us know it by yelling, "I'm not going to get a baclofen pump and I'm not going to the hospital." Rob called the clinic to get the ball rolling and ended up leaving a message. We were surprised when no one returned our phone call right away. Then when we finally did hear from them, they gave us the surprising news. They had made a managerial decision at the clinic to stop putting baclofen

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 be r

First of all, I'd like to thank the 2012  Faith's Fantastic 12 GABR Team: Becky Eske, Beth Kaylor, Cassie Brazell, Gwen Barone, Julie Jensen, Katie Huizinga, Kent Kaylor, Krysta Wrath, Rob Bousfield, Sarah Hoffman, Tanya Steckler and Brooke Schaff.   Thanks for riding and for fundraising! CLICK HERE TO SEE FAITH'S FANTASTIC 12 Also, a huge Thank You to all of you who donated to me for Faith's Fantastic 12:  Mike and Deone Lawlar (Grandpa and Grandma), Cousin Vicki Hammond, Friends Fran Dwelle, The Bitz Family, Tom & Diane Hahn, Michelle Stahl, The Sago Family, Peg Walth, Sandy Bauer, My dear college friends Janee Anez, Resa Hartl, Kristi Holzer and family, Faith's cousins, Sydnee and Kenzie Lawlar, Faith's auntie of sorts, Nicole Samuelson and family, Coworker Blaine Kincaid, Barrett Pharmacy & Variety of Watford City, Centennial Elementary School's staff and students and oh yeah, that mystery man from Marathon Oil! ALSO thanks to my brother Todd

I guess after Saturday's wheelchair soccer game in which Faith took part, I could easily see myself as a wheelchair soccer mom. She had such a blast and with the help of a soccer player from the University of Mary, she made some great plays and even scored some goals! And the faster her helper pushed her chair around up and down the gym, the bigger she smiled. Her dad watched from the sidelines praying her driver wasn't going to crash her into the wall. Faith goes flying across the gym to help her teammates on the other side check out the gigantic "soccer ball" are soccer balls supposed to go up in the air like that? While it was called wheelchair soccer, it was sort of a toss up between soccer and beach volleyball. The kids couldn't use their feet but instead used their hands and upper body to get the ball up and down the "soccer field." And the ball wasn't a soccer ball, instead it was a huge blow-up beach ball. The kids were divided a

It seems that the month of February always goes by so quickly. Maybe it is because January is usually the coldest month of the year and the month just crawls; then when February finally comes, spring doesn't seem so far away. This year, with the milder weather, January wasn't so bad and February is going by even faster than usual. Another factor to a fast-flying February, at least for our family, is that both mine and Rob's birthdays are in February and it is also the month Faith gets to celebrate one of her favorite holidays - Valentines Day. Another fun time for Faith this month was having her 2nd grade program at school. She had so much fun singing along to all the songs and jingling her bell (all the kids got to take turns playing an instrument and hers was the bell) that she wanted to have another program! It was so good to see her truly relaxed and not even having a tough time with startling when people clapped. And although she herself didn't have any lines, sh

What is curling you might ask? The only thing I really knew about curling was that in the Olympics, it was the sport where they use a broom to furiously brush the ice in order to make that round thing go in a certain direction. Then one day Faith brought a flier home from school that her physical therapist sent along announcing wheelchair curling at the Capital Curling Club (I had no idea Bismarck had their own curling club). Faith on Ice! Honestly, I wasn't too sure about it but Faith seemed like she really wanted to try it. She was mostly excited that she would get to go on the ice (must be the Canadian in her!) I, however, was not excited to get on the ice and was glad there were going to be volunteers to help Faith. I'm not sure of all the terms (although my sister-in-law tried to explain it to me the night before we went) but basically one volunteer helped Faith hold a stick thing which they clamped on to a "rock" and then pushed her chair to help her mov