Faith's Mom's Blog

I was very proud of Faith yesterday. She was so patient as she was fitted for her new SMO's. SMO stands for Supra-Malleolar Orthosis and are actually a type of AFO (Ankle-Foot Orthosis). These types of orthotics are designed to help the child maintain a vertical heel and support the arches of the foot. They are necessary for her foot because with her hypertonia her feet get pulled at a different angle than what is normal for the foot. It's sort of like trying to re-train the muscles to go in the right direction. It took about an hour and a half for her to get fitted. The hardest part was keeping Faith relaxed so that her physical therapist (PT) could get the best fit for her foot. When Faith gets excited, her legs shoot up and out and her tone is so strong that it's hard to keep everything in place. This is exactly what happened every time someone came into the room to say hi to her. Her PT started off by finding a plastic piece as close to the shape of Faith's foot...

Faith makes friends with a cute little goat.  Saturday was an absolutely amazing day. Our friend (and respite care provider) Michelle had told us about a miniature horse ranch that was having a fundraiser for the abused and neglected minis they take in. After having a wonderful time at China Star restaurant where we are friends with a lot of the staff, Michelle, Faith and I headed out into the country.  The weather was perfect - around 85 degrees with just enough of a breeze to make being outside a little more tolerable. As we drove down the gravel road into the driveway of the ranch we came upon a covered wagon and a team of horses pulling it along. We had to pull over to make way. There were people in the wagon waving to us passersby. It was quite a sight - not one that you see every day! Faith attempts to rope a pretend steer! As we made our way into where all of the festivities were taking place, I noticed a corral over in the northwest corner offering pony rides. There w...

Faith and Kimberly at Kimberly's college graduation reception Last night when I came home Faith was so excited to show me the Mr. Pumpkin Head she and Michelle had made. There it was on our bookshelf, right next to two Mr. Potato Heads. By the looks of it, Michelle and Faith had a blast. Once again, I found myself being very thankful for such wonderful respite care providers. I think respite care providers are a must for anyone with special needs children. I have to admit, I felt a little guilty handing off my daughter to someone else while I went and did, well, nothing. But that was the point. When we found Michelle, we were at the top of our stress level. We both needed a break. The difference between us and couples with non-special needs kids is they could just hire a babysitter or have friends and family look after their children. We on the other hand, need someone who has had special training to look after our special needs daughter. Rob and I applied to have a certai...

You know how kids come up with all sorts of excuses to not go to bed. They need a drink of water, they need to go to the bathroom, they need to make sure there's nothing under their bed or in their closet. My daughter is no different. I share a room with Faith. We are finally getting her to sleep in her own bed at night. It is an ongoing process. I am proud of her that she can fall asleep all on her own. She used to need to be cuddled, rocked and sang to. Now I put her in her bed, and she falls asleep, after about 30 minutes, that is. No matter how tired she seems, it always seems to take a while before she finally drifts off to sleep.  Faith cuddles in bed with her doll, baby Allie.  Last night, it seemed especially hard for her to fall asleep. Here is how are night went: 10:00 p.m. - I put Faith in her bed while she yells, "I want to stay awake. I don't want to go to bed." 10:05 p.m. - "Mommy, could you help me out." "What's the matter?...

When I pick Faith up at kindergarten, she is full of excitement wanting to share all that she did at school. And then when Dad comes home from work, she relates to him everything she shared with me. Both Rob and I love to hear about Faith's time at school, but we noticed something. She talks a lot about the adults - her teacher, her teacher's aide, her therapists, her special ed teacher - not much about her classmates though. Recently at Faith's IEP (Individual Education Plan) meeting at school Rob voiced this concern. We know that Faith is more comfortable with adults. She has seen therapists since she was six months old. It took her a long time to warm up to her preschool classmates. Even after she warmed up to them, their sudden noises and movements would cause her to startle. Adults are more predictable to her than other kids and predictable for her is comfortable. At kindergarten Faith is around 18 other kids which causes her to proceed with caution. Her teacher as...

Yesterday Faith had her follow up appointment with her eye doctor after a two-month trial without glasses or eye patching. He seemed quite amazed that Faith's farsightedness had improved and that the muscles in her eyes were working so that her eyes were "lining up." Faith started wearing glasses when she was two years old for extreme farsightedness and esotropia - which means her eyes tended to wander inward. At that time the eye doctor told us that if glasses and eye patching did not correct this then she would need surgery. It took a while for Faith to get used to wearing her glasses but even when she did get used to them, she didn't particularly like wearing them. She didn't mind the eye patch so much since it was for just 30 minutes a day, which is when we read her books. Faith looked so cute in her glasses, but I'm glad she no longer needs them! Fast forward to July 2009. Faith lost her glasses. My husband and I think it must have happened while we wer...

Well, she caught it. It was probably inevitable but still I hoped. Faith caught my cold. Kids get colds every day though, so why am I making such a big deal out of it? When Faith is sick, she doesn't sleep, which means mom doesn't sleep. Another thing about Faith - she doesn't nap either. She has never been a napper. Oh, how I envy my sister with her four-month-old who sleeps through family reunions and Cornhusker football games. (Live football games, that is.) So last night, there we were. After sleeping for about an hour, Faith woke up crying. Was it her tummy? Her throat? Her ears? No answer, just more wailing and lots of tears. Finally, she calmed down and we slept for another hour before she was up crying again. This time she fell back asleep relatively quickly.  A couple of hours later though, she was up again. I asked her if I needed to vent her tummy. Sometimes, when she cries a lot or when she's swallowing extra saliva it gets into her tummy. I vented and it h...

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. Faith getting some stander time in after school.  When Faith comes home from her busy day at school, she has her second feeding of the day and th...

There's a song we used to sing in elementary school called "Up, Up with People." Amazingly, I still remember all the lyrics. Up, up with people, you meet them wherever you go. Up, up with people, they're the best kind of folks you know. If more people were for people all people everywhere, there'd be a lot less people to worry about and a lot more people who care. I know that since the beginning of our journey of having a daughter with special needs, there have been many people who have been 'for us'. They have wanted what we wanted, the best for Faith. If I were to begin naming names, I know I would forget someone because there are just so many people that God has put in our path to help Faith grow and develop to the best of her ability. This list includes doctors, therapists, interventionists, teachers, teacher's aides, case managers, caretakers, counselors and even receptionists.  Faith working hard with her physical therapist.  Besides, profess...

Every time I take Faith to school and then bring her back home, I am reminded of how God arranged for all of our needs to be met. Last spring, we were getting concerned about where we lived and how it was going to work for getting Faith to Kindergarten in the fall. The apartment we lived in, which was not handicapped accessible, was close to downtown and was close to Faith's preschool. During most of the time at this address, my husband stayed home to take care of our daughter. I worked in Mandan and had to take our only vehicle to work every day. This wasn't a major problem for my husband because he simply walked Faith to her therapy sessions, walked her to preschool and was able to carry her and her chair up and down the stairs of our apartment. Things changed last November when Rob got a job, and I was able to stay home with Faith. It was more difficult for me to carry Faith up and down the stairs and because of the winter we had, it was much harder getting her to school...