Faith's Mom's Blog

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 can get frustrated, she doesn't let it 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 nutrition from a feedin

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

This past week, Faith did something for the first time ever at school - she ate lunch. She tried everything on her tray, which included a turkey sandwich, glazed carrots (which she ate the most of), strawberries and a few bites of a breadstick. Because Faith still needs help eating solids, her occupational therapist had Faith and a few other girls eat lunch together in a separate room. Faith has made the comment when we feed her that "that's for babies" meaning she knows that this is how babies eat - being spoon-fed by someone else. Since we know she is sensitive to this, we decided not to have her join her classroom at lunch for the time-being. But the fact that she actually got to have her lunch replace one of her tube feedings at school was very exciting. The next day she got to eat one of her favorite foods - mashed potatoes and gravy. Each day the kids at school get a choice between a chef salad, ham or turkey sandwich and a hot meal. Each of them comes with diff

Ever since Faith stopped going to therapy at Medcenter last fall, I felt like we haven't been running around so much. It's actually been kind of nice. But now today I was reminded of how our days of running used to be and how we managed with only one vehicle. This morning we had to get Rob to work then Faith had an appointment at Medcenter. We had about an hour before her appointment so Faith and I hung out at the library for a little bit. She picked out a Curious George book and I found a Roxanne Henke book I haven't read yet. Then we checked out The Red Rooster cafe which is located right in the library. I enjoyed a  delicious iced mocha and Faith had what else? Ice cream! Then it was time for Faith's appointment. She had a mild meltdown in the waiting room and continued to cry when the nurse came in to get her temp.  She was nervous because she knew someone was going to be looking at her Mic-key button, which was the reason for the appointment. By the time the

Faith loves chocolate cake! What a crazy week this has been. We have had many appointments and meetings this week but I'm only going to mention a few of the more important ones. We had Faith's IEP Meeting (Individual Education Plan) which is a huge meeting involving all who work with Faith at school to ensure we are setting up proper goals for her and working with her to attain those goals. If I count correctly, there were a dozen people seated around the conference table - all who thankfully have Faith's best interests in mind. Rob could only be there on his lunch break so I was a little nervous at first when he wasn't there because I was worried I was going to say the wrong thing or answer a question wrong or something. But thankfully when Rob showed up, my nerves settled. They all talked about standardized testing and how that really wouldn't be fair to Faith considering her physical limitations. In the end we as a team decided to for-go any type of testi

Faith in her favorite pajamas  I can definitely tell that Faith is back in school. Last night we were putting a puzzle together and she began telling me a story. I glanced away for just a second and she said, "Mommy, are you being an active listener?" She seems to be taking in a lot at school and everyday she comes homes with lots of stories including learning to play "Simon Says" and the new friends she is making. She really seems to like her teacher. She has had trouble with some of her feedings at school for which we are making adjustments. The only really tough part about her and school is getting her there. Every morning we have a major battle getting her out of her pajamas and getting her dressed. She loves to wear her jammies! And she must like me to wear mine as well because as soon as she notices I've changed from my pajamas to my clothes, the battle begins. She knows it's soon time for her to get out of her pajamas and into her clothes. She

Faith and I started the school week on Monday by attending a meeting with her special education teacher, both of her instructional aides, her teacher and a nurse. The objective of the meeting was to set up a feeding plan for Faith. Since she will be in school full days, she will need to receive two feedings at school plus I want her to take part in snack time and be with the other kids in the lunch room. Considering Faith's hefty schedule, it took a lot of thinking to include all of this in her day. We came up with a plan and if needed, we'll make adjustments as time goes on. I love that everyone who works with Faith puts her needs first above all else. Wednesday, Faith and I went down to the school for their open house. Faith brought all of her supplies to school and got to see her teacher and her classroom for the second time. She was excited to see her custom-made desk again. We even went to visit her Kindergarten teacher, Mrs. Steckler and her summer school teacher, Mrs.

We do not travel with Faith very often. Once had to take her to Minneapolis because Rob had an interview with the INS and his wife and child were required to be there. She was only about 10 months old at the time. We also flew to Toronto for Christmas when she was fourteen months old. Both of these trips took place pre -wheelchair and pre -feeding tube so it wasn't so bad. As she got older, however, she attained more equipment and it became more and more difficult to travel with her.   There was one trip where I had to go to Rochester for possible gallbladder surgery and we actually rented a jeep in which to fit all of our stuff. The only vehicle we had was a 2001 Hyundai Elantra . It was January and very cold. We took Faith to the Mall of America (where she is shown to the right getting a feeding) so we could try to warm our spirits on such a freezing cold trip. Two years ago, we flew once again to Toronto. It was a nightmare and we vowed never to do this again. Faith had her K

Faith was around two years old when she got her Mic-Key button and began eating via feeding tube. And honestly, it was a nightmare. She hadn't been eating enough to gain weight or to meet her nutritional needs so this was really our only hope. She had the surgery and was discharged that night. When we brought her home we did just as the nurses told us to do. We hooked up a large syringe to her feeding tube that was connected to her button and slowly allowed the liquid to go into her tummy. When we first started out, she was receiving three ounces of Pediasure every three hours, four times a day. Sometimes the liquid went into her tummy too quickly and she ended up with an upset stomach, vomiting it back up. We learned to go as slow as we could and it took a lot of patience. It took us about 30 minutes to get all three ounces into her tummy. Another issue with her enteral feedings is that if she moved too quickly after receiving her feeding she would throw up. We had to learn to a

I've been wanting to get this post up since Friday night when Faith reached an exciting milestone. Unfortunately, however, Faith ended up getting sick. Besides being busy taking care of her, I have also been sleep deprived as neither of us has slept well all weekend. This morning I kept Faith home from school and we are both exhausted. I decided to try and post this anyway. So if it doesn't make sense, you'll know why! Friday was a busy day for us. I went with Faith to school so that we could meet her new instructional aide who will be working with her during summer school. We showed her Faith's feeding pump and how she would be connecting and disconnecting Faith's feeding tube to her Mic-Key button. We also showed her how to lift Faith and get her in and out of her chair properly. After being at the school for a couple of hours, I went home for lunch then went back to get her so that she could go bowling with all of the other kindergartners. Faith's teammat

I don't usually use the old cliche, Thank God Its Friday or TGIF but today I really am thanking the Lord it is Friday. This week has been a bit of a rough one for the whole Bousfield family. Monday - Faith had the day off from school for an unused snow day or something and thank goodness she did because she woke up at 6:30 a.m. throwing up. After getting her changed, me changed and her bed cleaned up, she did a repeat about 30 minutes later. She continued to do so until mid-afternoon until there was absolutely nothing left in her poor little tummy. Later that afternoon, she seemed to be feeling better so a gave her a mixture of pediasure/water and she kept it down. Tuesday - Faith and I woke up to find Rob at home on the couch. Now he was throwing up and had called in sick. I kept Faith home from school to make sure her feedings were going to continue going okay. Although tired, she did make it to occupational and speech therapy in the afternoon but ended up having a diarrhea

After agonizing and praying over the decision to send Faith to school for half days or full days, we finally agreed that half days would be more than enough. I am finding that even only with half days at school, her schedule is full. She is quite the busy little bee. While she's at school from 8:30 to 12:30 five days a week, Faith has two occupational therapies, two physical therapies, two speech therapies, four sessions with her special education teacher, library time, music, recess and physical education. Not to mention a full one-hour feeding and time in her stander. I can understand why the school's recommendation was to have Faith in school for five full days a week. With all that she has to do at school, she is also there to learn academically. But it was ultimately her parents' decision and I believe we made the best one. When Faith comes home from her busy day at school she has her second feeding of the day and then after that she can finally get stretched and r