Faith's Mom's Blog

Daddy got to take Faith to her first day of summer school Faith was full of questions this morning getting ready for summer school, or Camp Edventure. Many of them she already knew the answer to since we had been talking about it for a while. I think she wanted to be reassured of who her teachers were going to be, who was going to be her aide, when I was coming to get her etc. One of the questions she asked was, "How many days of summer school do I have left?" She hadn't even begun and she already wanted to know when it would end! Seriously though, towards the end of the regular school year, she fought in the mornings about going to school. I think she was just getting tired and wanted a much-needed break. She expends so much energy at school that she is exhausted at the end of the day. A nurse told me recently that kids with CP put out three times more energy than the average child because it takes so much work for some of them just to keep their heads up and try

Earlier this week, Faith, along with the rest of the first graders at Centennial went on a field trip for what is normally called "Summer Fun and Safety Day" but to me and probably many others it was a "Not So Summery Crazy Day." The whole event was supposed to take place outdoors at Sertoma Park, where the students could visit about 25 different booths and learn about having fun while staying safe. Due to the rainy weather, however, all of the kids (about 1,500 first and third graders from different schools), teachers, chaperons, booths, games, prizes, informational handouts and even a live DJ all got crammed into one church building -with mostly everything in their gymnasium. It was a little crazy, especially since I was trying to be super safe and maneuver Faith's wheelchair through the crowd without running over any feet. Thank goodness Faith's afternoon aide was there to help! Though a little crazy, there were still some good moments - like me getti

Finally last week, Faith got her hair cut! Her thick hair was getting too long and unmanageable so I had Julie cut it pretty short - perfect timing for the warmer summer months. It is really cute and she has gotten lots of compliments. We are also finally looking at purchasing an accessible van. Our disability case manager e-mailed us some specs of a van that is here in Bismarck. On Sunday we went to look at it and we think it would work well for us. It does have some door issues but we think we'll be able to work around them. It also has an in-floor ramp that can come out and go back in either automatically or manually. We rolled Faith into the van and she was pretty excited about it! Yesterday Faith had her class field trip to the zoo. Even though it rained for about 20 minutes, we still had lots of fun and were thankful the weather was good for the most part. Since I drove Faith out there, we were able to stay a little longer while her classmates headed back to school. I

In school, the students are learning about three important R words - Reduce, Reuse and Recycle. But not only did the first graders at Centennial Elementary learn about these words, they put them to action. All three first grade classrooms were asked to take empty cartons, cans, containers and other materials; save them and remake them into something else. This afternoon they were able to share their recycled projects. I must say, some of them got quite creative! The parents were able to go around their child's classroom and look at the projects one by one. When someone came up to their table, the student said their name, described their project and then asked if there were any questions. The kids seemed to have a good time telling their audience about their reused and recycled products. There were trains made from pop bottles and empty soup cans, robots made from several different boxes, plant containers made out of egg cartons, a few birdhouses and even a black unicorn made

Today at school there was a very special reception held for Faith. All of the first graders came along with their teachers and even the kindergarten teachers were there to join the festivities. There were also other staff at the school who came to eat ice cream and Oreo cookies - a few of Faith's favorites. It was a celebration of sorts held to honor Faith the GABR Star. We all got to watch the newscasts in which Faith was interviewed. The highlight of the afternoon was when they announced how much money the school had raised that day for GABR. To raise funds, Centennial Elementary had "Hat Day." If you donated money, you got to wear a hat to school. Some kids dug out their "tooth money" while others grabbed some coins from their piggy banks. And in the end, the students, staff and parents raised a grand total of $1,300 - the most ever raised by Centennial Elementary for GABR. The money was evenly distributed to the four students at Centennial who have teams

I will never forget one of Faith's first programs ever. It was during her preschool days and she was tense and nervous the whole time, startling every time someone clapped. She really didn't look like she was having much fun. Then she began to gag and I knew if I didn't do something, she would throw up all over the place. I bolted towards her, grabbed her out of the chair and hurried into the bathroom with her. I didn't have her venting tube with me but her aide brought me her feeding tube so I could at least try to get air out of her tummy so that she wouldn't throw up. Thankfully, it worked. In kindergarten though Faith didn't have any near throw-ups during a program, she still continued to be stiff and nervous and startled when everyone clapped. It was a little hard to watch and both Rob and I wondered if sticking her in front of a large audience just to be in a school program was the right thing to do. There were times we both wanted to run up and rescue h

I think today is Faith's first official snow day. There have been days we have kept her out of school because of the weather but never because the schools were closed. I remember a couple of storms while she was in preschool and I was like, "I'm not taking my daughter out in this." This year there were a couple of days before she started riding the bus that it was just way too cold to walk her to school. Even though this storm was pretty bad, I was still a little surprised Bismarck had actually called off school! Faith was very excited! Rob - not so much as he still had to try to get to work. Our parking lot this morning. I watched him from a window in our hallway as he got our Hyundai out of the parking lot and thought he was actually going to make it. About half an hour later he came inside and said he got stuck after disappearing from my sight as he turned onto Ithica. Thankfully, a good'ol North Dakota boy with a four-wheel drive pickup bailed him out.

For kids at school in Bismarck, today marked the official end of Christmas vacation. But for Faith, it wasn't just any ordinary back-to-school day - she started the New Year off by taking the bus to school! It was her first bus ride EVER! I could tell she was a little nervous this morning about her big adventure. We waited downstairs in our lobby for about five minutes then it was there - the big orange school bus. I rolled her outside and turned her backwards so they could get her situated onto the lift. When the lift began going up, Faith began to relax and even smiled. Faith getting loaded onto the bus Once she was in the bus, they locked her chair in place and I hurried down to the school to meet her. As I hoofed it down over the snow-covered sidewalks, I was thankful that today was the day Faith started taking the bus - it would have been difficult to get Faith over the sidewalks with all that unshoveled snow. I barely made it to the school before they began to unl

We recently received Faith's report card of sorts called, "Annual Goals, Short-Term Objectives, and Periodic Review of Services." Which basically lets us know how Faith is doing with her therapies and special education/academics at school. These are the goals that we set up for her at the beginning of the year when we did her Individual Education Plan ( IEP ).   Getting ready for school  I was so happy to see that in each area, she is making " some progress ." In Occupational Therapy, they have been working on self-feeding. This has been a challenge for her as it involves fine motor skills. She does have some high tone in her arms so she has to work through that in order to bring the spoon directly to her mouth. Her therapist in this ares says that Faith does fatigue during this exercise but that she is really motivated to work hard. One of our goals is for Faith to begin to read. I am so proud of her that she knows all of her letter sounds and a

Today Faith got to take a field trip to the Belle Mehus Auditorium to enjoy "Singing in the Season" put on by the Central Dakota Children's Choir. It worked perfectly to drive Rob to work then go to the auditorium to wait for her class. I was a little unprepared for the number of kids there were in attendance - every first grader in the Bismarck/Mandan area got to go on this field trip! After we met up with Faith's class, we sat in the beautiful auditorium and enjoyed the concert. Faith was a little nervous when the lights were turned down and during all of the applause but all in all I think it was a very good experience for her.

We've been waking up to some beautiful scenery with the frosted trees Because of the snow storms last week, we had a few rough days of getting Faith to school and back. Thankfully, my friend Tina was able to help out with her van and also one of our neighbors, who also has kids at Centennial, was able to push Faith up the hill one day. Rob and I both think that maybe it's time to get Faith on the bus. I thought it would be easy enough, since the bus goes right by here every day and that all I would have to do is make a phone call and it would happen just like that. Not so fast, I learned! On Friday, I had a meeting with Faith's special education teacher and she explained that to get Faith on the bus, her IEP team would have to meet and decide that because Faith doesn't have the necessary transportation to get to school, she will have to be picked up by the bus. Even after all parties agree that Faith needs to take the bus, it is not guaranteed that the bus will co

Faith has the sweetest, kindest, most generous instructional aides EVER! Recently, the school's 6th graders held their annual rummage sale. I of course forgot to send money along for Faith to buy something so her aides took it upon themselves to buy something for her. During the winter, I normally put these little pink booties on over Faith's orthotics to keep her feet warm, but this year they were pretty tight and hard to get on. The booties are soft and have Velcro on the sides so they were easy to get on her feet even over her orthotics. I can't find any boots like that anywhere and it's impossible to get regular boots on over her orthotics. Well, thankfully her aides found the perfect solution to keep her little feet warm this winter! Her new slippers are just ducky! Everyone gets a real kick out of Faith's duck slippers!

Faith is doing so well in school and I am just so proud of her! When I take her to school in the mornings, she arrives with excitement, practically bursting at the seams to say good morning to both of her aides. Then she'll briefly turn toward me, blow me a kiss and we part our separate ways. I have no worries, no fears, no concerns...I know she'll do great. Then, after the morning and early afternoon has quickly passed, I return to school to get her and she greets me with a big smile, yelling out, "Mommy!" She's had a good day but she is ready to go home and relax. As I begin to push her home in her chair, she usually exclaims, "I had such a fun day at school today!" She then proceeds to tell me some of the things she has done which includes: calendar, reading, math, snack, driving her chair and any other special activities of the day. She also tells me about some of her friends who have helped her throughout the day. When she's done she'll sa

Faith was so excited to go to school today because she got to wear her pajamas!

This month has been crazy with appointments, meetings and unfortunately for me a bit of sickness as well. Here are some tidbits from the last week or so. Last week I went to the doctor and was diagnosed as having walking pneumonia. She prescribed some heavy-duty antibiotics so along with taking those, I took any opportunity I could to sleep and rest. Now that I have my energy back, I need to make up for lost time especially when it comes to cleaning and organizing! We had our first parent/teacher conference with Faith's teacher. Hard to believe she has been in school for nine weeks already! We met with her teacher along with her special education teacher, her speech therapist and occupational therapist. They all said she is such a joy! She is doing really well with knowing her letter sounds and learning some sight words. She's also doing great in her power chair at school. The only issue they have had is that she doesn't seem fully supported in her chair and they find h

It was a little cool this morning, with the temp barely above the 50 degree mark and the sky was threatening rain, but that did not deter these Centennial first-graders from having fun at the Pumpkin Patch! Mrs. Reim's first grade class  Sittin' on some big square bales  The horses were so beautiful and gentle  Who is that peekin' through the window? Going on a bear hunt... Hay Girls!

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

Soon Faith will be going along with her first-grade class on a field trip to Papa's Pumpkin Patch. I'm sure there will be a few more trips to the Patch as a family. Isn't Fall a great time of the year?  

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.