Faith's Mom's Blog

Yes, it's true that Faith has been celebrating her birthday ever since last week! I mean, a girl only turns 19 once, right? And this is the last official year of her being a teenager! Last Tuesday when she woke up she said, "I can't believe I'm 19 already!" She was super excited because not only was it her birthday but it was Tie-Dye Tuesday at her day program and she was bringing cupcakes to all her friends there!  During the drive to Mandan, she asked if she was going to get any flowers for her birthday. I kept telling her I really didn't know. (She is still upset with me for throwing out the flowers that her cousins had gotten her in May for her graduation.)  I wasn't planning on getting her flowers, but I was pretty sure she would get at least one bouquet. She had a blast at her day program and on the way home she said she couldn't wait to see the apartment (she knew I was going to put up decorations for her.)  She was so excited to come through th...

Here it is the first day of August and one thing is certain: last month was a busy one! Both Faith and I had some important appointments, plus she had her 6-month evaluation for her day program. It's so hard to believe she's been there for half a year already. Faith at the Sock Hop at her day program   The Day Program is one of her favorite things in the world. She loves going and I'm so glad they love having her there. She is a bright light and full of joy wherever she goes. She is also full of encouragement, which I believe is one of her God-given gifts! But besides going to her day program and therapy, Faith had some other major events - all of which take place the last week in July! Big Event #1: Our First Baseball Game The first was attending our first-ever Bismarck Larks baseball game. We didn't just attend, though. We both got to go on the field where she placed the ball on the mound and then announced into a microphone, "Play Ball!" This opportunity ...

This past year has been one of the more challenging ones we've had in light of caring for our daughter. As she has gotten heavier, I found lifting her has presented opportunities for straining my back. Thankfully, I’ve been able to receive healing through both prayer and the hands of a wonderful friend who is also a massage therapist. At the same time, I know I can no longer lift Faith as I once used to. Faith hanging out at the eye doctor. She received a good report and still does not need glasses!  Another huge change is that this past spring, Faith officially became a woman. While this is usually something for girls to celebrate, for us it provided a new set of challenges, including major PMS symptoms. Her sensitivity to loud noises heightens during this time and her already high tone kicks into overdrive, causing her to be very uncomfortable in her chair. Because of her discomfort, we have spent a lot of time sitting on the couch together. A benefit of this for me is I...

It seems that the month of February always goes by so quickly. Maybe it is because January is usually the coldest month of the year and the month just crawls; then when February finally comes, spring doesn't seem so far away.  This year, with the milder weather, January wasn't so bad, and February is going by even faster than usual. Another factor to a fast-flying February, at least for our family, is that both mine and Rob's birthdays are in February. It is also the month Faith gets to celebrate one of her favorite holidays - Valentines Day. Another fun time for Faith this month was having her 2nd grade program at school. She had so much fun singing along to all the songs and jingling her bell (all the kids got to take turns playing an instrument and hers was the bell) that she wanted to have another program!  It was so good to see her truly relaxed and not having a tough time with startling when people clapped. And although she herself didn't have any lines, she wa...

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!"  I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school? Both her morning and afternoon aides say that when she is in the classroom, she is a little tense, and her arms are bent up and she can't totally relax. I'm hoping this gets better as she acclimates to her new classroom.  It can be a challenge to get out the door in the morning!  Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up. We decided to take her to a nu...

All week long, the clinic that Faith goes to has been holding pediatric therapy sessions in a handicapped-accessible park called Magical Moments. Of course, when this was being planned, the weather was going to be a key factor. It turned out to be a beautiful week - perfect for playing in the park.  Yesterday, Faith got in her gait trainer like any normal physical therapy session but this time instead of walking down a hallway, she got to walk up some ramps that eventually led to some slides. It was harder than normal because these ramps were at a slight incline, and she has never walked uphill before. She worked so hard, and as a reward, she got to go down the green slide with her physical therapist. She was all smiles! Faith giving it all she's got Keep going Faith! Faith made it to the slide! Going down the slide! When we lived on 7th street, we used to take Faith to this park quite a bit because of the special wheelchair swing it had. The swing is now new an...

A typical Wednesday afternoon for Faith... Faith getting her stretches in the pool Faith uses a wet noodle to help kick her legs behind her while working to keep her head up After all that work, it's time to relax a little Faith has come a long way since her first day in the pool when she screamed during the whole half-hour session. Rob had to get in there with her the next time but after that she was fine and started to have fun in the pool. After we get out of the pool, I hurry and get her dressed so she's ready for her physical therapy session. One of the reasons she has hydro first is so that her muscles are more relaxed enabling her to use them more effectively in physical therapy. Look how tall Faith is standing in her gait trainer! And notice her new tennis shoes! Faith in her gait trainer taking some steps Even though it is hard work, Faith really does enjoy her physical therapy sessions - as you can tell in this picture! I know one reason she enj...

Ever since Faith stopped going to therapy at the clinic 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 around 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. 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 appointme...

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...

Yesterday was a big day for Faith - there were a little bit of lights, a few cameras, and a lot of ACTION! At the beginning of the day about four people met with Faith so that she could FINALLY get the right part installed on her chair. These parts enable her to use the same buttons that she uses to drive her chair to work with her computer. Technology is wonderful but it can require lots of patience! Faith working on her computer with help from Ms. Hall That afternoon, the KFYR TV crew came in to record Faith doing some of her daily activities at school. They recorded her doing some work on her computer with her buttons and also driving her power chair. I haven't seen her drive her chair for a long time and I was very impressed by how well she's driving! She is even able to drive herself into the elevator and turn around because she doesn't like her back to the door. The cameraman got in there with her, and I think he was a little nervous she was going to run him ...