Showing posts with label adaptive equipment. Show all posts
Showing posts with label adaptive equipment. Show all posts

Thursday, January 24, 2013

Life Without an Elevator

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 because Faith really wanted prayer but that wasn't going to cut it for Faith. She said that would be "boring."

Rob got her chair downstairs then carried Faith down and put her in it. Getting her and her chair downstairs is the relatively easy part, it's more of a challenge getting everything back up. We had a fun time at the Healing Rooms and were very blessed by their prayers and scriptures they shared with us. We were glad we made the effort to go. Upon getting back home, we decided to leave Faith's chair in the van and just bring her up.
Faith's chair has made many trips up and down the stairs this week
That evening, Faith was not a happy camper that she did not have her chair to sit in during her last feeding of the day. We tried to put her in her sit-to-stand apparatus in a sitting position but she didn't like that. I ended up sitting with her on the couch during her feeding. She was still crying for her chair when she went to bed.

The next day, we got Faith downstairs then she and her dad took me to work and they went to the clinic to get her mic-key button changed. (It had come out at school last week, thankfully her school has a full-time nurse who put it right back in).

The elevator still wasn't working when they got back home. Rob managed to get Faith and her chair upstairs by himself. Thankfully, I was able to get a ride home from work that evening so he wouldn't have to take her and her chair up and down the stairs again. One good thing in all of this is that Faith has a manual base on her chair which makes it possible to get it up and down the stairs. If she just had a power base, there would be no way we could do it.

On Wednesday, we made it to school even though we were a little late. After school, the elevator still wasn't working (the building managers had assured us it would be fixed Wednesday sometime). This morning Faith woke up with a low-grade fever and because of that combined with the freezing cold weather and no working elevator, we decided to just keep Faith home. When I got home from work, I was very dismayed to find it had still not been fixed.

There are other people in our building with whom this has been a major inconvenience for - especially those elderly and wheel-chair bound tenants on the third floor.  Many of the caretakers and those who come here from community support organizations are all very frustrated.

This really, really makes me want to live on the first floor or a different building altogether! We are really hoping and praying that when they do finally get the elevator going again it will be fixed for good this time! And I'll remember to never take a working elevator for granted!

Saturday, January 19, 2013

Faith's Mom's Blog Top 12 of 2012

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 Experience for Our Brave Girl publish date: 1-6-12
I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots. Read More

Number 10 - A 40th Wedding Anniversary publish date 6-17-12
On June 3rd of this year, my parents celebrated their 40th wedding anniversary. It wasn't until this past weekend, however, that they were able to celebrate the momentous occasion with their five kids, eight grandchildren and a few of their siblings as well. Read More

Number 9 - My Ten Favorite Christmas Songs publish date 12-23-12 
Christmas music has been playing now for about a month or so but honestly, I think it could play all year long as far as I'm concerned. I love the beautiful lyrics about the baby born in a manger; some of them written hundreds of years ago. While the traditional ones about Jesus are my favorite, there are a few Christmas songs that I really have fun listening to - and singing along with! Read More

Number 8 - Faith's Fun Week at School publish date 11-30-12
At least once a year, Faith's school has a fun week where there is a theme each day on how to dress. When Rob was getting Faith ready in the mornings, he really didn't put too much effort into making sure Faith was dressed according to the theme of the day. I used to love having these fun weeks at school and I loved getting Faith ready each day this week. Read More

Number 7 - Merry Christmas from Faith's Mom's Blog publish date 12-25-12
This is a slideshow I put together using Smilebox. It includes several photos I took throughout the month of December, of our family and around Bismarck. View the Slideshow

Number 6 - Christmas Festivities Galore publish date 12-10-12
This season is known as the most wonderful time of the year and probably the busiest time of the year as well. Along with starting Christmas shopping, putting up our tree and thinking about getting our Christmas cards ready, we have taken part in some great Christmas events. Read More

Number 5 - Give the Gift of a Wheelchair publish date 12-16-12
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. Read More

Number 4 - The Baclofen Pump Decision publish date 7-13-12
Even though Faith's x-rays have shown that her hips are stable and have not come any further out of her sockets (especially her left hip), we decided to move forward with getting the baclofen pump. We felt this was the right ecision and that Faith would benefit if the pump helped to decrease her tone. Read More

Number 3 - Having A Blast Playing Wheelchair Soccer publish date 3-25-12
I guess after Saturday's wheelchair soccer game in which Faith took part, I could easily see myself as a wheelchair soccer mom. She had such a blast and with the help of a soccer player from the University of Mary, she made some great plays and even scored some goals! Read More

Number 2 - Grandparents From a Distance publish date 8-2-12
Cari, our daughter-in-law, has asked me to write up an article for her blog. Not being a blog-writer myself, this has been something of a new experience for me. I do trust that your reading of this will be worth your while. Read More

Number 1 - Goodbye to Our Special Tomato publish date 6-1-12
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. Read More

Sunday, December 16, 2012

Give the Gift of a Wheelchair

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 father leaves his special needs child and moves elsewhere because he is embarrassed or he feels too much shame. Having a disabled child in some countries is a stigma and there are no such words as "special" needs.

While there is a lot of debate about our government and its health care system, we can be thankful that they can help families get basic equipment that is needed for special needs children. For many countries, the government simply does not care about citizens in their country who have a disability.

This is where the ministry, Wheels for the World, comes in to help. This ministry is part of Joni and Friends, founded by Joni Eareckson Tada whose international ministry for the disabled is well-known throughout the world. In case you haven't heard of her, Joni is a quadriplegic who as a teenager became disabled as a result of a diving accident. It is through Wheels for the World that over 90,000 wheelchairs have been collected, restored and distributed since its start in 1994.

The best part about this ministry is, along with the wheelchairs, recipients also receive the message of the Gospel. While it is the goal of the ministry to meet the physical needs of the disabled, it is even more important to meet the spiritual needs.

In 2013, the Wheels for the World team will be distributing wheelchairs and sharing the Gospel in several countries including El Salvador, Haiti, Peru, Thailand, Uganda, Poland, Romania, and China. If you are interested in donating money for a wheelchair to a disabled child, it is just $150 for one wheelchair, $300 for two wheelchairs and $450 for three wheelchairs. Just imagine - a wheelchair that costs thousands of dollars in the United States can be given to a child in need for just hundreds!

You can even donate a wheelchair in honor of someone by going here. You will be able to fill out a card that says, "Given in the love of Jesus by _____." Rob and I have done this in honor of Faith and what a huge blessing to be able to give a gift that can transform a child's life! We hope you, too, consider giving the gift of a wheelchair - and more importantly the gift of hearing about Jesus!

Friday, June 1, 2012

Goodbye to Our Special Tomato

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 red, but it was in fact, purple.

Faith in her adaptive car seat, The Special Tomato
When we first got it, Faith was about four years old and pretty little. Before getting it, we had made her car seat as supportive as we could by using pillows and foam wedges. But we were having trouble keeping her head supported so we knew we had to do something different.The Special Tomato is a pretty serious car seat and it took up a lot of our backseat but it was more than worth it. It was such a relief that Faith had the support she needed while riding in the car. It was also nice, because we could adjust the seat as she grew taller.

As Faith grew, it became more of a chore to get her out of her wheelchair and into her special car seat, especially when she wasn't very happy about going somewhere and she wouldn't relax her muscles. It was also a chore because we had to take her wheelchair apart, put the seat of her chair in the passenger seat and the base in the trunk. Thankfully, just when it seemed she had outgrown the Special Tomato, altogether, our disability case manager found an accessible van that we purchased just last summer.

We have been wanting to donate the Special Tomato seat to a family who just like us at one time, really needs it. Just today our case manager may have found a new home for it. We really hope the seat works out for their child. It is such a good feeling being able to give it to someone else and we hope it serves them as well as it served us.


When Faith was in her Special Tomato, we had to put the seat to her wheelchair in the passenger seat
in our car and the base to her chair in our trunk.


Thanks to our van, we didn't have to worry anymore about Faith outgrowing her adaptive car seat




Our van makes transporting our growing girl so much easier!

Thursday, August 11, 2011

Some Magical Moments at the Park

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 improved and Faith loved it just as much if not more than she used to.

Having so much fun on the swing!
After she was finally done swinging we went home for a feeding and for me to get my bean salad out of the crock pot for our picnic back at the park. The potluck picnic was sponsored by the CP Support Group and it was a great chance to visit with other families and chat with the pediatric therapists - about something else besides therapy!

Time to socialize and eat lots of yummy food!
It was a great day at the park and I know Faith was totally tuckered out because she slept in past 9:00 this morning!

Friday, August 5, 2011

Our Van - A True Blessing from God

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 getting close to really needing something else.

Faith in her adaptive car seat - her legs and feet are kind of squished

Since Faith's Kid Cart days, we had prayed for an accessible van. But this winter, we prayed harder than ever for a van to transport Faith. It was all just getting to be too much lifting. I had looked online for accessible vans but became disheartened upon finding out the cost. A brand new van with a lift could easily cost $50,000. Used ones seemed to be around the $15,000-$30,000 range, depending on the age and number of miles and most of them were located out of state. We had found a few located in North Dakota but they were much older and bigger than we wanted.

Then one day at the beginning of the summer, Faith's disability case manager e-mailed us the specs for an accessible van for sale. It sounded perfect and it was located in north Bismarck, not far from where we live!

When we first went to see it, we were a little concerned because it seemed to have some door issues. Also, the automatic ramp wasn't completely reliable but there was a manual crank which was a good option. We thought about it for quite a while and prayed too - we wondered if this was the van God had for us.

The second time we went to see it, we got Faith inside of it and took it for a test drive. We were impressed and we learned there was a little trick to the door so that it worked better. We really felt this was it, this was our van! The owner even went down on the price for us. It had been his dad's van who was in a power chair. His dad passed away so they no longer needed it.

After going through NDAD to acquire a low-interest loan and getting all of the paper work taken care of, we finally purchased our van! And thanks to GABR, we will be able to pay off part of that loan in the immediate future. We truly believe this is a blessing to us from God - and provided to us in His perfect timing.

Faith loves the van - she says it is soooo big!

Friday, January 7, 2011

Adjustments

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 will be able to cooperate and will have control in that area. That would be soooooo nice and I know Faith would feel like such a big girl!

Although there are some adjustments that need to be made, I'm so thankful for my growing girl!

Faith at the age of three in her very first chair - her Kid Kart
Faith in her new chair when she was five. Doesn't it look big for her!
Look how big she is in her chair now!

Friday, December 17, 2010

Some Progress

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 at school they are trying to get her to recognize her first set of sight words. Faith is more auditory than visual so one thing they are doing to help her learn to read is to mount a laptop computer to her chair. The computer has all of the reading materials that her class uses which enables her to not only see the text but to hear it as well. She is then able to push her buttons to turn the pages on her own.

Another area she is working on is physical therapy which involves walking in her gait trainer and also driving her power chair. Her goal is to drive from her classroom up to the gym in as fast as time as possible, with the least amount of stops. There are a few times she has gone the whole distance without any stops! Another improvement she has made is that she no longer just drives around in circles!

Besides all of these activities, she also has speech, time in her stander, computer lab, library, music, and time in her classroom. What a busy little girl she is! No wonder she doesn't want to do anything or go anywhere when she gets home!
I am so thankful for all of the help that Faith receives at school and that each person there is doing their best to help Faith reach her fullest potential. Both Rob and I are so proud of her!

Faith lying on the floor relaxing with her iPAD

Tuesday, August 17, 2010

Growing Girl

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 book to see what my measurements were when I was her age. When I was seven I only weighed 45 pounds. I was scrawny due to my heart condition. But I was taller than Faith - I was 49 inches tall which made me look really skinny.

While I am thankful Faith is growing, it forces me to think about our future when I may not be able to lift her at all. My cardiologist told me at one time I should probably not lift her when she gets to be 60 pounds or so. At one time 60 pounds seemed a long way off, but not anymore! I need to remember to take it one day at a time and to replace anxiety with prayer. God has given me so much strength to enable me to look after my daughter. I know he will continue to give me the strength I need as my daughter continues to be a growing girl.

Saturday, July 10, 2010

Traveling with Faith

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 Kid Kart at the time, which is the smallest version of a wheelchair. We had to carry her carseat with us wherever we went because she needed to sit in that during the flight. When we flew out of Bismarck we hoped her Kid Kart would arrive in Canada all intact.

Before landing in Canada, we had to fly to Denver where we missed our connecting flight. We ended up on a plane to Chicago and ended up spending half the night in their airport. Everything was weather related so they couldn't put us up in a motel. By the time we had arrived in Toronto, Rob and I were exhausted having not slept for over 24 hours. Thankfully, Faith had slept in the airport with Rob and I taking turns holding her.

Once we got to Toronto we stayed overnight at a hotel then drove to Rob's sister's house in Peterborough, about an hour away. We had a very nice Christmas with his family but we were dreading getting on the plane again. To make matters worse, due to some mix up, Rob and Faith were on a separate plane than me. This caused serious anxiety. In Denver we discovered the footrest on Faith's chair had gotten broken during the flight. It was a good thing Faith was getting a new chair soon.

Most recently, we traveled by car to Regina, Saskatchewan over the 4th of July weekend. Somehow we managed to fit all of our stuff in our little Hyundai. Faith's seating system comes off of the base of her wheelchair and sits in our passenger seat and then the base goes in the trunk. She sits in her special adaptive carseat so there is really only room for the three of us in the car. I think we are the only family with a child in a wheelchair who doesn't own a minivan!

Faith did very well on the way to Canada, despite the fact that we barely got out of Bismarck and she was asking, "Are we in Canada yet?" She kept herself busy by telling stories, pretending to draw pictures on the window, reciting the Bear Hunt story and me and her pretending to take 10-second naps. She went for 4 1/2 hours before we got her Portable PlayStation out so she could watch videos.

We did her feeding in the car, which wasn't a big deal. The bigger challenge was finding a place to change her. We couldn't change her in the back seat of our car because there's simply no room. We stopped in an undisclosed small town gas station hoping they would have a large enough rest room for me to lay Faith down and change her. Thankfully, they did! I was relieved but a bit annoyed by the people in the gas station - they acted like they had never seen a little girl in a wheelchair before. Who knows, maybe some of the hadn't. Or maybe I'm just used to Bismarck where everyone seems so disability sensitive, going out of their way to help with doors and at least offer a smile.

Finally, we reached the border, showed them our passports and we easily entered into Canada! At our hotel, there was limited floor space so it was hard to get Faith's chair around in our room. But, they did have a swimming pool which Faith was very excited about and we went swimming as soon as we could.


This was a rare vacation for the three of us and we had fun swimming, going to the park and eating out. We also reconnected with one of Rob's friends, Scott with whom he had transferred from Toronto to Regina with during one of his computer gigs.

On the way back home, Faith didn't do as well since she hadn't really slept that great in a strange place. She tried her hardest to be a trooper but all she could talk about was wanting to be at home. Finally, after driving through a storm, making a final stop at Tim Horton's in Weyburn, Rob getting pulled into the office at the border (I guess the border patrol was doing a good job because they were pulling all the cars in which is something neither of us had ever seen before), we finally made it back to North Dakota. We ended up driving through some more rainy weather but once we got to Bismarck, everything was sunny, calm and peaceful. Home sweet home.

Wednesday, June 16, 2010

Toys Faith Enjoys

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 adaptive PlayStation controller. Of course, it's daddy's dream to play PlayStation with his daughter. And of course leave it up to Rob (or as we sometimes call him, Techno Bob) to figure out a way to hook up the controller with our PlayStation 3 instead of the PlayStation 2, which it is designed for.

We find it works best when we hook up Faith's button switches to the controller then it's kind of like driving her chair. Say she's playing her Cars game, she can hit one button to make it drive to the left, one button to make it go right and another button to drive it forward. We've also played Wheel of Fortune with her which is lots of fun. She hits a certain button to spin the wheel, another to buy a vowel and so on. She guesses the letters but we help her solve!



Some non adaptive toys we have found that she likes includes:

Candyland - I love playing this with her! If I hold the deck of cards up for her, she can draw one, look at it and tell me the number and the color of the squares. She has a little trouble identifying the little pictures with the pink squares so she just calls them all ice cream cones. Faith is a little competitive though and likes to win!

Hi-Ho Cherry-O - Another board game that she can somewhat play if I help her. She can spin the spinner on her own and tell me what it lands on. But the cherries are so tiny so I usually put them on and take them off of the tree for her. She does like counting the cherries when we take them in and out of the bucket. She's good at this one too and usually beats me.

A Keyboard - Rob had an extra keyboard laying around so he let Faith have it as a toy. She loves it! She sits at the table and pretends she's typing in stories and rhymes. She also pretends she's going to different websites. She does great with opening her hands on the keyboard which is great to see.

Potato Head Playskool Toy Story Mr. Potato HeadMr. Potato Head - She received this for a Christmas gift two years ago and still loves it. We sit at the table together and she likes to pick out the eyes, nose, arms, etc. and I help her put them on. Then she loves to take it apart and can do pretty good if I hold onto it for her.

Puzzles - She really likes putting together puzzles. Of course, another toy I need to help her with and sometimes we spend an hour doing the same puzzle over and over again! She especially likes her Sesame Street puzzle that has a winter scene on one side and a summer scene on the other. I help position her hands so that she can be the one to press the pieces into place. She's not a traditional puzzle-put-togetherer though as she doesn't necessarily put all the edge pieces together first. She likes to do things in groups like the sky first, then the grass, then each character or color.

Lego - We bought Faith some really pretty Lego with pink and purple pieces included. It came with pieces to build a little house. Her Lego collection grew when Rob bought her an  Indiana Jones Lego set (maybe more for himself than for her). Then she got the ultimate Lego set - Rob's sister had all of their Lego from when she and Rob were kids. She washed all of the pieces and mailed it to us. We have lots of Lego! Me and Rob help Faith push the pieces together - her favorite things to build are high towers and houses. Then she helps take everything apart. Rob especially has built some real Lego masterpieces and is always a little disappointed when Faith wants to take them apart right away.



Blocks - She has a traditional set of wooden blocks that have letters and numbers on them. She really likes to stack them up and make high towers. She loves to knock them down and crash blocks everywhere! I try to get her to knock them down on her own. She gets so excited that her arms tighten up and she can't quite reach. I kept telling her I know she can do it and after a few tries she usually does without me having to move it closer. Since she's been learning her numbers and letters, we've also been using the blocks for that too.

V Tech - V.Smile Rock & Sing Musical CarRock and Sing Musical Car - (made by VTech) This is probably her favorite toy ever. She received it for Christmas from her Auntie Joh when she was just 14 months old. This is one toy she could play with all on her own, and she still plays with it! When she was a baby and toddler she would lay on the floor and sort of curve her body around the car. There is a handle on it so she would grab it and push it back and forth and it would make music and sounds. A couple of years ago Rob accidentally stepped on it and broke the handle off. We looked into getting her a new one but it cost like over $100 on Amazon because the toy is no longer being made. Thankfully, he was able to fix it with Duct tape!

And of course there is her Baby Allie, her books, DVDs, her PSP (PlayStation Portable) that she likes too. Next, I would love to get her an iPad - which probably won't be for a while. I got that idea from another blog I read about a girl named Caleigh who has CP and uses an iPad. It would be a portable version of the touchscreen computer she uses at school. And I'm sure mom and dad would have fun with it too!

Saturday, March 13, 2010

Our Little Car Accident

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 were able to make the purchase thanks to the Great American Bike Race).

I followed the van I had just hit around the block and we found a place to park. We both got out of the vehicle and he sort of had a half-smile on his face. I was so relieved he wasn't mad. It was a company van, a 2008 Ford, and the only damage he received was a little scratch on the hitch. Then I looked at the front of my car. My poor little Hyundai. The right bumper was a mess. Easily $2,000 damage. The guy looked at me and said, "well that's why we have insurance." He made the call to the police, we talked a bit then got in our vehicles and waited. I explained to Faith that mommy had a little accident. She sort of tensed up at the word accident so I quickly explained that everything was okay and that we just had to wait a little bit for the policeman. She asked, "what's a policeman?" I told her he was someone who helped people and he made sure people followed all of the rules.

While waiting, Faith repeatedly told me she wanted to go home and I wondered how Rob was doing. I knew he would be worried. I did not have a cell phone so I couldn't call him. Meanwhile, at home Michelle has arrived and Rob told her he was convinced we got into some sort of accident and that all he could think about was Faith crying in the backseat. He even called Julie (our hairdresser) to ask what time we had left her shop.

Finally, the policeman arrived and took a report from me and the other driver, got all of our information and then proceeded to give me a ticket for following too closely behind. It seemed like he felt bad for giving it to me, like he said, that's how everyone in Bismarck drives." I didn't care about a ticket, I was just thankful my daughter was handling everything so well.

While we waited for the policeman to write everything up, the song, "Praise You in the Storm" by Casting Crowns came on. As I listened to the words, I looked back at Faith and said, "Let's thank the Lord that we are both all right. I then began to thank Him that we had hit such a nice driver, that there was no damage to the other vehicle, that the policeman was so nice, etc. It was amazing to me that I felt such peace in that situation. At one time I would have been so angry with myself, frustrated and on the verge of tears. But I was just so very thankful that Faith and I were both okay and nothing else really mattered.

Finally, we got on our way and made it home. Michelle came out to meet us and she said, "Rob's convinced you to into some sort of accident." Then I showed her my bumper. When I did see Rob he gave us both a big hug, he was so relieved. I asked if he was mad about the car and he said, "No, of course not." He was also relieved to hear that Faith was fine through it all and we told her over and over how we were so proud of her for being such a big girl.

Another thing I am thankful for through this whole ordeal is that we have such a wonderful insurance agent, who is a friend of ours that also has a special-needs child. After giving her the accident information, my phone call gave us a chance to have a nice conversation about our daughters and that if we were ever feeling down that we could call one another anytime. What a huge blessing! Thank you Lord for your goodness, the peace you provide, and for continuing to take care of all of our needs.

Wednesday, January 13, 2010

The Missing Arm

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 arm. Which apparently, I forgot to do yesterday morning.

I was a little embarrassed about Faith having a one-armed chair yesterday. But today, I was able redeem myself because not only did I remember her arm, I also remembered her feeding, her tray, her extra changing supplies and her strawberry shortcake doll for show and share. Even Faith's aid was impressed!

Friday, October 9, 2009

Why Couldn't Winter Wait?

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 is then almost twice her normal size, the laterals keep popping out and when this happens she falls sideways. I'm not sure what's going to happen when she has to start wearing her snowpants. Is she even going to fit in her chair, I wonder.

The first chair she had was called a Kid Kart and we had a special cover for it to protect her from the wind when she is outside. This chair comes with no such thing. So far, I resort to putting a blanket over and around her legs and have her face covered with a sweathsirt of mine, which she doesn't like because she can't see anything. The Kid Kart cover had a special little window so she could still see. I guess we'll need to figure something out.

I think some people think I am a little crazy for walking my child to school in this cold weather but really, by the time I get her to the car, into the car, her chair taken apart, drive down the street, put her chair back together, get her into her chair, strap her into her chair and take her inside, I might as well have just walked her to school in less time.

I do wonder, however, how it will be trying to get her chair through the snow when it actually accumulates on the ground. I tried it last year and her chair just didn't budge in the snow. Hopefully this winter we will not have another 100 inches.

Ah, yes, the dilemmas that winter brings with it. Why couldn't winter hold off for another month or maybe even two?

Wednesday, September 30, 2009

Faith's Amazing Patience

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 foot as possible. Then, using some white, cold stuff she would fill in the plastic piece to fit her foot. Each time her PT had to add to the cast, she had to put Faith's foot in the cold white stuff to see what kind of progress she was making. She did this about a dozen times for each of Faith's feet before she finally got them perfected. Faith does not like cold things on her skin so I knew this was a challenge for Faith everytime she had to put her foot into that cold stuff.

The casting took about an hour. After this was done, someone else came in and used a special material to "tape" up Faith's feet all the way to her mid-calf. He squeezed it and held it for about five minutes and after it stiffened, he cut it away and it became a mold of what her SMO will look like. The SMO is then made with hard plastic and padding is put in over the casting part.

During the process, Faith was able to pick out what color of velcro straps she wanted and what picture to place on the backs of her orthotics. She chose purple straps with flowers on the back. I remember the second pair of SMO's she had, her dad was in charge and he chose to have a hockey player on the back. Her third pair had a horse and the straps were hot pink. This new pair will be her fourth.

Faith's patience reminds me of what a good girl she is. No matter what difficulties and struggles she is having, she never fails to have a smile on her face. I am so very proud of her.