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! As you can tell by my new blog header, I am ready for spring. It has been a very cold winter here in North Dakota with several days below zero since December. I know though that much of the country has had a tough winter too so I know we are 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 to be replaced. 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

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. Here is her list for things she is thankful for:  Faith doesn't miss Wheel even when we'ere on vacation! Mommy and Daddy Wheel of Fortune

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 to

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 Winn