Faith's Mom's Blog

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...

This is my first post of the new year, and it is already March - I guess I have some catching up to do! It has been a very cold winter here in North Dakota with several days below zero since December. I know that much of the country has had a tough winter too, so we are certainly not alone in being anxious for spring and the warmer weather that comes along with it. Faith especially seems to be struggling with the colder temps - it most likely affects her already high tone. It hasn't helped that it is more difficult to transport her since we can't use our van's ramp due to our door needing replacement. Rob has had to get her into the other side of our van which entails him sort of lifting her chair up into the van. We are looking forward to finally getting it fixed this week.  Now that I've gotten our weather-related issues out of the way, here is an update on what the rest of this New Year has been like for us:  We kicked off the year getting together with frien...

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,...

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 ...

I knew this would happen. Ever since Rob's parents told us about their plans to fly from Toronto to Winnipeg, we looked so forward to driving there to meet them. And now, after spending five days in Canada, the fun is over much too soon. Faith gets ready for our drive to Canada Rob, Faith and I made the 420-mile drive on Monday and Jean and David arrived by plane on Tuesday morning. When we told people we were driving to Winnipeg, they said, "That's kind of a long drive." But after driving over 1,300 miles all the way to Toronto in October 2011, this drive was going to be a breeze! And it was. Faith once again proved to be a great little traveler and was content to listen to her music CDs the whole way. Of course, we didn't make it in 6 hours and 20 minutes like MapQuest said we would. With stops to eat, gas up, get Faith changed and get her feedings started, it took us more like 8 1/2 hours. Practically the whole way there, Faith asked, "Are we in Win...

Not too long ago, someone at church commented to me, "Your daughter is so full of life." I have heard lots of positive comments about Faith throughout the years, but this one brought tears to my eyes. To think that my daughter - a nine-year-old girl bound to a wheelchair was full of life - meant the world to me. Faith's disability causes her to be different from her peers and others around her. She understands this, and although she gets frustrated at times, she doesn't let her disability get her down. She has a very positive attitude about life. I give a lot of the credit to those who pray without ceasing for her and to Jesus who helps her on her journey each and every day. I truly praise God that someone who sees my daughter sees that she has a joyful life despite her special needs. Full of joy I know too well this isn't always the case. Usually, when someone pictures in their mind a nine-year-old who needs to use a wheelchair for mobility, gets her nutri...

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. 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 than 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 getting the added calories. While the mornings have been going great, we have a...