Faith's Mom's Blog

We are currently on day four with no working elevator in our apartment building, one that it is supposed to be handicapped-accessible. It has been a little frustrating to say the least. It was supposed to be fixed on Wednesday afternoon but we are still waiting. No working elevator in this apartment building It has been going out off and on recently but just once was it a major inconvenience when we were getting Faith ready to go to school and realized the elevator was not working. Needless to say, she was late for school that day. This time we discovered the elevator was out on Monday after we called the Healing Rooms and realized they were open. We gleefully got bundled up in our winter attire - even the below-zero temperature was not going to stop us. We ran into a major disappointment though when we got to the elevator and realized it wasn't working. We went back to our apartment and figured out what to do next. We thought about having the Healing Rooms come to us beca

I thought it would be interesting to see what blog posts in 2012 had the most views. I was a little surprised by the post that was visited the most. I was also very proud that the guest post written by my father-in-law made the top 12, in fact it almost made number one! I had a big surge of views during the month of December. In fact, four of the posts I put up that month ended up getting more page views than the posts I had written at the beginning and middle of 2012. I wrote 42 posts during 2012 and here are Faith's Mom's Blog top 12 of 2012: Number 12 - Good News About Faith's Hips publish date: 2-25-12 It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket! Read More Number 11 - Conscious Sedation - A New Exper

As with most kids in this country who have a physical impairment, our daughter has access to one of the most basic necessities of a handicapped child - a wheelchair. But for those disabled children in third-world or communist countries, many children with cerebral palsy or similar disabilities cannot so easily attain a a much-needed chair that offers the simple gift of mobility. For just a $150 donation, a pediatric wheelchair can be given to a child in a third-world country It is truly heartbreaking that these children who have no means of mobility are left home to lie in bed all day while their parents go to work. These children cannot attend school because they have no way of being transported to school or even the ability to sit up while at school. Some children who may have use of their upper bodies crawl on the ground to get from one place to another. The worst part for these families is that they are looked down upon for having a child with special needs. Sometimes the fa

Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions and many other activities. It also helped us through our time of not being able to afford an accessible van. Like all adaptive equipment , the special car seat was expensive and although it is the law that a child is secured in a car seat while traveling in a vehicle, neither health insurance nor Medicaid would pay for it. Thankfully, we were able to receive funds from the fundraiser, the Great American Bike Race ( GABR ) which helps families pay for services and equipment that insurance doesn't cover for kids with cerebral palsy and related disabilities.  After doing research on the Internet and talking to Faith's physical and occupational therapists, we decided to go for the Special Tomato adaptive car seat. You would think something with that name would be r

All week long, Medcenter One has been holding their pediatric therapy sessions 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 Rob and I 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 and improv

Ever since finding out Faith was going to be needing some sort of wheelchair for mobility, my husband and I knew that one day we would need an accessible van. Until that time, though, we knew we would have to make-do without one. After Faith outgrew her regular car seat and needed more support, we were able to acquire an adaptive car seat called the Special Tomato using funds from GABR . Faith's first wheelchair was a pediatric wheelchair called a Kid Cart - which came apart and easily fit into the trunk of our car. But after outgrowing that, her chair became much bigger and much heavier as well. Thankfully, we were able to take the seating system off of the base and then put the seating system in the passenger seat of our car with the base in the trunk. All of this required lots of lifting. Here's how that process went: I knew after her chair was upgraded with a new back and seat, not to mention the fact that Faith just wouldn't stop getting taller, we were gettin

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

Faith is growing. It's been two years this month that she has had her current wheelchair and now it's time for some major adjustments. Since first getting her chair, she has probably grown five inches in her trunk alone. She's ready for a new seat and a new backrest and also a new harness. Another thing she is growing out of is the orthotics she wears on her feet. Soon, she'll be fitted for a new pair but in the meantime, she had some extensions put on so that her toes wouldn't be sticking out of them! She's also ready for the next size up in diapers, but oops! They don't make anything bigger than a size six so we've been trying out some extra small children's briefs that seem to fit her well. I must say, I would love to see the day she no longer has to wear any type of diaper or brief and this summer might be a good time to see if she can be potty trained. I know of other kids with cp who were trained around 8 years old. Hopefully her muscles wi

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

Look at those long legs! Every where we go, people who know Faith comment, "I can't believe how much she's grown this summer." We can't believe it either! We just weighed her the other day and she weighs 48 pounds. 48 pounds!! That's so unbelievable to me as her weight has been an issue for so long but finally she is starting to fill out more and she even has a roll in her tummy! I also tried to measure her while she was lying down and as far as I could tell, she's about 47 inches tall - almost four feet! Rob and I have had to make adjustments in the way that we carry her and bring her from room to room. We have to remember her legs are longer so we have to sort of turn sideways when we carry her into the bathroom or into her room. Every once in a while we forget how long she is and bump her feet on the wall or the doorway. This summer we have had to adjust her chair and need to adjust her stander as well. Just out of curiosity I looked in my baby b

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

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

Late last week, Faith and I had a little accident in the Hyundai. We were going north on Washington, which is a very busy street especially around 5:00 p.m. I was trying to get to Avenue C and then make a left in order to get home but we only made it as far as Avenue B. We had just gotten done with Faith's physical therapy appointment and getting her hair cut. It was after five and I knew Michelle (respite care) was due to be at our home at 5:30. I was in a bit of a hurry and then I got distracted by a pedestrian who was trying to decide where to cross the street. I watched him for a bit then when I looked back in front of me all I saw were bright red brake lights. I hit the brakes but it was too late. CRASH! Right away I looked back at Faith and she had a look of surprise on her face. I asked her if she was OK and she said she was. I was so thankful that instead of being buckled in a regular carseat, she was buckled into her adaptable carseat that offered her extra support. (We

I'm sure by now Faith's teacher's aid thinks I'm somewhat of a space cadet. On occasion I forget to bring things to school, like for instance, Faith's feeding. Faith's aid has gotten to the point where she writes little reminders to me in our communications notebook. Sometimes, though, even with these helpful little reminders, I still forget. But yesterday was the real kicker! When I got Faith to school, her aid noticed one of Faith's arms from her chair was missing. Let me explain. Faith's chair comes in two parts - her seating system and a base with wheels. At home she has an extra base which enables Faith to power her own chair. In the process of switching bases, we take one of the chair's arms off and replace it with another arm for the power base. This arm has a little computer on it to tell Faith when the chair is on. In putting Faith's regular base back on, I have to take the computer arm out and replace it with the chair's normal ar

The weatherpeople have been threatening us for days and now as I write this post, there is white stuff swirling and twirling down from the sky. I guess maybe we North Dakotans should have known that we were going to have an early winter, beings our summer was actually more like fall. But still...it is truly sad to see the green leaves falling off of the trees without even having a chance to turn color first. It is also truly sad that parents have had to dig out their kids's winter attire, including mittens and boots. I know it can be difficult getting kids all bundled up to go out in the 20 degree weather, as we are having now. But for parents of kids in wheelchairs, it is not just difficult, it is a chore unto itself. Faith's new chair, while she sits in it so well, is truly a pain when it comes to her winter garb. She has these side lateral things that help her stay in an upright position. You can pop the laterals out which is great for getting her coat on but since she

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. Which 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 foo