Faith's Mom's Blog

It's hard to believe that the Great American Bike Race (GABR) is only a month away! We have been involved in this event since 2008 when I formed a team called "Faith's Rockin' Riders" with some ladies at Laducer where I worked. In 2009 we sort of took a break since we were in the process of moving from our old apartment to our current, accessible one but Rob did still ride on MedEquip One's Team. Last year we formed Faith's Fantastic 10 which consisted mostly of our friends. And this year we are gearing up again but with a slightly different name - Faith's Fantastic 12 since we had to expand our team to 12 riders instead of 10! So now there are 1,200 riders taking part in the event instead of just 1,000! GABR 2008 GABR 2009 GABR 2010 We are especially excited this year because Faith, along with her friend, Tanner are GABR Stars this year! GABR stars help to promote this huge fundraising event which means their  pictures are seen ev

There are two ' B ' words that are constantly on my mind and are causing me some serious emotional strain. B riefs and B aclofen. You may wonder what's the big deal about briefs. Well, it is a big deal when your child is 7 years old and has to wear these large plastic diaper like products that resemble a small garbage bag and seem very uncomfortable. Since Faith has been growing (I know that's a good thing) she has finally outgrown her size six diapers which is the largest size they make. She really doesn't seem to mind them but it pains me each time I put her in one. Briefs seem so much more final than diapers - like she will be wearing them forever and I don't know if I'll ever be able to accept that. We haven't ever really worked on potty training. We don't even know if it is a reality because she may not be able to control her bladder. But now because of these briefs and my dislike for them, that is something I really want to start working on

This week Faith had two appointments at Medcenter, one of which consisted of getting her fitted for new orthotics, which by the way are also called AFOs or SMOs. The whole process took over an hour and Faith did great the whole time! She loved seeing her physical therapist again, whom she doesn't see on a regular basis anymore because she gets all of her PT at school. As the therapists worked hard to get the molding on her feet just right, they asked Faith what color of  padding she wanted, what color she wanted for her straps and if she wanted a picture on the back. Faith responded, "You can never have too many accessories!" Jackie and another physical therapist work to get the molding just right for Faith's long, skinny feet. The therapists have to repeatedly fit Faith's foot in the mold, make some adjustments and fit it again. They did this several times before finally getting it perfect. Next, it's time for Tate from MedEquip to come and do his

Adaptive Equipment for Children with Cerebral Palsy Faith in her stander, a common piece of adaptive equipment for kids with cp

Despite mine and Faith's major lack of sleep this past couple of days due to her bad cold, which became progressively worse on Wednesday night, we are relieved and happy because of the good news we recently received. In my last blog, I asked for prayers for Faith as she was going to be getting her hip x-rays taken. Just a day later we received a phone call saying that there has been "no significant change" in her left hip. Her last x-ray had been taken in May so in six months the hip has not come any further out of its socket. Thank You Lord, for answering our prayers! Faith has stayed home these past couple of days due to her cold which I think is turning into a sinus infection so we picked up some antibiotics today. Hopefully she'll recover 100% by Monday so she can make it to school all three days next week. I haven't minded staying indoors as the temperature has gotten steadily colder. I don't think it even hit 20 degrees today. With the onset of winte

Admittedly, it has been tough to find the right church that works for our family. We have tried several in the Bismarck-Mandan area with each of them having their own pros and cons. And a pro for one person in our family can be a con for another. Take the praise and worship time, for instance. The louder and more exciting the better, for me anyways but not for Faith. With her CP, Faith has something called a "startle reflex." It's something newborns have but they grow out of it. When a newborn baby is startled their whole body reacts with arms flailing and legs going because they can't control those movements yet. For Faith, she has never been able to control those movements. It used to be that when she startled many times in a short period she would get very upset and would start to cry. Another issue she has is if she is somewhere loud and dark with the noise varying at different levels, she is very tense the whole time and her muscles just can't relax. Plac

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

Today was the dreaded day. Faith's botox appointment was at 12:30 and now, thank goodness it is over. She is happily at home watching one of her favorite Elmo DVDs. While we were getting ready to go, she asked who we were going to go see. Usually I volunteer this information but I wasn't sure what to say to her. I told her we were going to see Danielle (who helps Dr. Eggert, the one who injects the botox). Faith loves Danielle and I think the feeling is mutual. She asked what we were going to do with Danielle and I told her we were going to talk to her. Then Faith asked, "Mommy are you going to be there with me the whole time?" She knew something was up. Danielle met us out in the waiting room and we went back to her office. She applied some topical ointment to Faith's skin that would help lessen the pain of the needles. Faith was totally fine with that. We had to wait about fifteen minutes and during that time I tried to explain to her that Dr. Eggert was goi

 Due to logistics and other reasons, Rob was not able to witness Faith coming into the world. She was born in Rochester, over 600 miles from home. Rob found out he was a daddy when he stopped in Fergus Falls, Minnesota to make a call to his mother. She told him he was a daddy! He got to Rochester just before midnight on the day of her birth - October 25, 2003. When Rob first saw Faith's tiny little body - just over 2 lbs., she was covered with tubes and lines all hooked up to different apparatuses. What was supposed to be one of the most joyful events of his life was one of the most frightening. After spending time with a daughter he couldn't even hold, he came down to the hospital to see me. I was still pretty out of it but I do remember coming up with Faith's middle name - Faith Jean Armour. (Faith has both mine and Rob's middle names). We visited her in the NICU as much as we could. She looked so tiny and fragile but we knew she was a fighter. Finally, one week a

It can be hard for us to find toys that Faith likes to play with, especially for longer periods of time. There are very few toys we have found that she can play with entirely on her own. When she was three her early interventionist introduced us to the world of adaptive toys - or toys that are adapted so that kids with disabilities can play with them. We bought her three adaptive animal toys, plugged her button switches into them and when she pushed the button it would cause the animal to move and make a noise. She had a drumming bunny, a kitty cat and a duck. Oh yeah, and an adaptive toy coffee maker that I think Rob liked more than she did! These toys were great for teaching her cause and effect but she got bored of them pretty quickly. We haven't invested much money into adaptive toys because they are so expensive plus we don't know for sure if when we buy them for her she's even going to like them. One adaptive toy we did buy her recently for her birthday was an ad

There are so many words I can think of that describes the Great American Bike Race event which took place this past Saturday: Loud, Fun, Exciting, Crazy, Inspiring, Encouraging, Exhausting but most of all it was just plain Awesome! As team captain, I was required to be there all day, which I didn't mind but my feet certainly did as I did not sit down once! I arrived before 9:00 a.m. to greet my first rider of the day, my cousin Beth. She really knew how to set the pace by biking 17 miles in 25 minutes! After Beth, my former co-workers from Laducer showed up. I am so thankful to keep in touch with many of my friends from Laducer. Jane and Brooke did awesome as well - Jane did especially great with fundraising as she raised over $600! Lindsey and her boyfriend Matt arrived sporting their very cool 'Faith's Fantastic Ten' t-shirts which were paid for by my brother Todd and his oil well consulting business. They were designed by another rider, Liza Kessel. While Ma

The Largest Fundraiser of Its Kind

Last week and now again this week we are experiencing some near-sleepless nights. Last week, Faith was only sleeping for about an hour at a time before waking up, tossing and turning on the verge of crying. Each time this happened I would get up with her and hold her until she went back to sleep. Then an hour later we would repeat the process. This was nothing new for her. It had gone on before and each time it happened I wondered what could be going on. Rob and I figured she was going through a growth spurt and having pains in her legs like I used to have. I decided this time though, that I would take her in to see her pediatrician. I'm so glad I did. He attributed her restlessness to muscle spasms which is common for those with high muscle tone (tight muscles). It made sense too because of the way she was acting. It's as if she just couldn't get comfortable. When you or I sleep we can actually relax our muscles, but Faith can't because her brain is not capable of se

I remember very well the day in April, 2004 when we got the news that Faith had health issues that could lead to cerebral palsy. It was one of the most heartbreaking days of my life. I wondered how this smiley, happy little girl who would lie on her back and move her arms and legs around could possibly end up with CP ? When we returned home to Watford City after seeing Faith's pediatrician in Bismarck, there was one day where I opened up my Bible to Hebrews 11. For some reason, though, I skipped over to Chapter 12 and started reading it aloud to Faith. I couldn't believe my eyes when I came across verses 12 and 13. Therefore, strengthen your feeble arms and weak knees. Make level paths for your feet, so that the lame may not be disabled, but rather healed. Hebrews 12:12-13 I was so excited, I said, "Faith did you hear that?" and I read it again. I really truly believed that the Lord had given me that verse at that particular time for a reason. As time went