Faith's Mom's Blog

This past year has held many challenges, many changes, and some breakthroughs as well. We have met some new people who have helped Faith make forward progress but have been discouraged as certain prayers continue to go unanswered. Through it all though, there is one truth that remains - God has been with us and He has been faithful. He has placed many people in our lives who have kept us encouraged and who continue to inspire us each and every day to "walk by faith not by sight." As I think about our past year, I can't help but feel hopeful that the New Year will be better than the last! JANUARY - Me and Faith spent the tail-end of last year and the beginning of 2013 recovering from the flu. In fact, she was at the walk-in clinic on New Year's Eve. We recovered just in time to celebrate the NDSU Bison winning their second straight national championship. This year they are once again headed to Frisco, Texas to defend their title as they take on Towson University...

It's easy to get caught up in the hustle and bustle of Christmas and it can easily become a stressful time of the year instead of a joyful one. In our family, we know that Faith does best when her normal routines are kept and the fewer surprises the better. We tried our best this year to keep everything as low-key as possible and do less for Christmas than we have in the past. This included less shopping, less baking, and less activities in general. Instead of baking Happy Birthday Jesus cupcakes this year for Faith's teachers and caretakers, I found these cupcake Christmas tree ornaments and I wrote on the bottom of each one "Happy Birthday Jesus 2013" All I really wanted for Christmas anyway was to go our Christmas Eve service at church. While Faith wasn't willing at first, eventually she relented. The next day since opening Christmas gifts is outside of her normal routine, we had to actually coax her to open the gifts. Hard to believe for a 10-year-old, I k...

The weather outside is truly frightful, as I write this post, it is a frigid -22 degrees F. Rob is lamenting this fact, for a few reasons - one because he actually had to go outdoors today and two because it is a balmy 23 degrees back home in Toronto - that's a 45-degree difference! He does always say, "We need to move to Canada where it's warm!" Doing puzzles is a great indoor activity Thankfully, inside it was much more delightful, and Faith could not have picked a more perfect day to get out all of her puzzles, board games, and Christmas books. We had so much fun playing Candyland (she won, of course), reading some of her favorite Christmas stories and listening to Christmas music .  Our mailman also dropped off a Christmas package from Faith's grandparents. I told Faith we were going to hide it from Daddy to see how long it would take him to find it. But as soon as Rob walked through the door, Faith spilled the beans. "Daddy," she said, "We...

As a child who has a feeding tube, Faith doesn't really have reason to look forward to a big Thanksgiving dinner. Throw in the fact that she has not been feeling well this past week and woke up yesterday morning crying and gagging on mucous, she didn't have much of a Thanksgiving. So, for her Thanksgiving celebration, I told her that we could make a list of things she is thankful for, and she was happy doing just that. She also had me help her write little letters to her friends and family saying things like, "Thank you for coming to church" or "Thank you for letting me come visit you." It was really sweet, and she came up with about 20 people she wanted to write letters for. I think this says a lot - that she is simply thankful for the people in her life. Thankfully, she feels much better today. Faith is thankful for: Mommy and Daddy Wheel of Fortune Big hugs and kisses Having a sleepover with her grandma (we haven't actually done this yet,...

November 17 marks World Prematurity Day . One might wonder why awareness needs to be raised about premature births. Well, I can tell you firsthand that it is a really good thing when more people are aware of the risks and complications, not to mention the emotional toll, of having a baby born too early. Having a baby born prematurely is not something most expectant parents think about until it happens to them. Most moms-to-be who first learn they are pregnant automatically think they have seven or eight months to prepare for one of the biggest days of their life. Expectant parents usually have one response when asked if they are hoping for a boy or a girl - "As long as the baby's healthy." But sadly, sometimes that's not always the case - especially if the baby is born too early. I will never forget the book I was reading shortly after finding out I was pregnant with Faith - "What to Expect When You're Expecting." It was a great resource that o...

Faith's birthday didn't start out so well as the day before she had come down with a cold and did not sleep very good two nights in row. She missed Thursday and Friday at school. Friday was her birthday, and she had been looking so forward to going. Not only was she going to be doing a special birthday activity at school, but it was also her school's fall festival party. I had serious hesitations about going forward with her birthday party on Saturday but thankfully, she had a good night sleep and felt much better. Faith celebrates with her mommy, grandma, cousin and aunties We had her party at our apartment building lobby, which worked perfectly for the number of guests that showed up. It was so funny because she said when she came downstairs to the lobby, she wanted everyone to say, "Surprise!"  Rob left shortly after bringing her down when he discovered it had turned into an all-girl party. (I really didn't plan it that way but none of the guys ende...

We have been in our new apartment for about two weeks now and I have also made the transition from working at Coventry to Aetna. In the midst of moving upstairs in our building, I also moved up north to the Aetna building. In both moves, I am happy to find that the advantages far outweigh the disadvantages. Faith watches her pink tv in our new apartment On the home front, the main reason we wanted to move to the top floor was because we were hoping it would be quieter. And it is! No more constant noise above our heads at all hours of the day! Although Faith still asks, "How long are we going to be living in this apartment," she is making the adjustment rather well. If there has been one thing to get used to - it has definitely been that it is a lot warmer on the top floor facing south! I mean, like really warm! The temps have gotten down to about 40 degrees at night and we still haven't turned on our heat. In fact, we had to hook up Faith's portable air conditi...

Am I ever glad it was last weekend that we traveled for the NDSU football game and not this one as we are having our first winter storm. Parts of South Dakota are actually under a blizzard watch! This weekend the Bison are getting ready to take on Northern Iowa at the Fargodome. It should be a good game considering our opposing team is ranked number four in the NCAA FCS division. But honestly, I am still thinking about last weekend's 20-0 victory over SDSU and how much fun I had with my dad and sister as we NDSU grads cheered the Bison on in person!   The Thundering Herd prepares to take the field! My sister Tesa was the master planner behind the whole event. She had wanted to take my dad to a Bison football game and asked if I would want to come along. She was hoping for homecoming tickets but the only tickets she was able to acquire were to the Bison vs Jackrabbits game. Brookings, South Dakota was a great meeting place as she drove there from Lincoln, Nebraska and me an...

One of the main reasons we sought chiropractic care for Faith was to help her with her startle reflex. Most people startle when they hear a loud, sudden noise but for Faith her startle can be debilitating. When she was younger, if she startled often in a short amount of time, she would break down in tears. Her startle made it difficult to do things like being in a school program or going to the movies. It was hard to watch her startling constantly during a church service when someone spoke into a microphone. Her whole body would tense up making it impossible for her muscles to relax. Besides her startle, we were also having a tough time dealing with her emotions and behavior. She would have screaming fits that left me and Rob feeling helpless, not knowing what to do to help her. We thought as she got older, things would get better. But last year during school, her tantrums escalated, and we chalked it up to pure exhaustion. Her pediatrician even agreed she was just too fatigued a...

We did something new as a family this weekend - we went to the United Tribes International Powwow . This year marks 44 years that the United Tribes Technical College here in Bismarck has hosted the huge event.  Seventy tribes are represented at the event with over 1,500 dancers and drummers coming from all over the world to participate. The event draws over 20,000 spectators from Thursday through Sunday and our family was part of the crowd this year. Over 1,500 dancers participate in the Powwow It all started when Faith's class went to the event on a field trip. Unfortunately, it is hard to get a wheelchair to the arena where all the action takes place. That's because there are no sidewalks and someone has to push a chair through the grass which can be hard, especially when it is hot and humid outside with bees swarming everywhere.  Her aide ended up not being able to get Faith to join her classmates at the arena. Faith was pretty upset about this and about her dad takin...

Today marks Faith's 8th day of school and we are all adjusting to a new schedule. Faith has made huge strides this past summer in sleeping better and having more energy, so we decided to have her go to school from 9:00 a.m. to 3:00 p.m. 5 days a week. This is a change as last year she did not go Tuesday and Thursday afternoons due to how tired and worn out she would get. Faith's first day of 4th grade School starts at 8:30 a.m. but we asked if it would be okay for us to get her there at 9:00 instead. This allows us to more time to get her first feeding into her before she even gets to school. Her aides noticed last year that when we brought her to school without any food in her tummy, she was pretty sluggish and tired upon arrival.  Sometimes, after getting her to school she wouldn't start getting her feeding until after 9:00 a.m. which meant, that because she gets a feeding every 3 hours, her last feeding of the day didn't end until 10:00 p.m. Another advantage ...

All of us North Dakotans know that summer goes by way too fast. While winter can last six long months, summer comes and goes before we know it. Normally, I don't mind when summer is over because I look forward to Fall and all the busyness that the new season brings. Not to mention the cooler weather, the changing leaves, and celebrating Faith's birthday. But this year is different - I'm not quite ready to say goodbye to summer. Maybe I'm not quite ready because it has been unseasonably cool with temps in the 70s and low 80s - to me those are perfect temperatures! Or maybe I'm just not quite mentally prepared for Faith to go back to school where she'll be a 4th grader. Or it just might simply be this summer has a great one for our family and I'm sad to see it end.    Faith and I enjoyed hanging out on the patio at our apartment complex this summer Faith, on the other hand is all gung-ho to start school again. In fact, ever since it ended last year ...

Upon reflecting about the month of July, I have come to the conclusion that Faith has never had more appointments in one month than she did last month. She had over a dozen chiropractic appointments, eight ABM lessons, two visits from the Easter Seals coordinator, one occupational therapy consult, one optometrist appointment (and a partridge in a pear tree!). The Easter Seals visits were merely a formality as Faith has a new case worker and we needed to update some paperwork. Her disability case manager came along on one of the visits. Her optometrist appointment was her annual routine eye exam, and we are glad to report that Faith's eyes continue to remain the same and she still isn't needing glasses. We are thrilled about this as Faith had glasses at one time and we also had to do patching on her eyes, but her vision and her eye muscles continue to function normally! (Praise the Lord!) Faith getting a chance to relax! In June, Rob took Faith to see a chiropractor for ...