Tuesday, April 3, 2012

You Are Who You Are For a Reason

Guest Post by Russel Kelfer

You are who you are for a reason.
You're part of an intricate plan.
You're a precious and perfect unique design,
Called "God's special woman or man."

You look like you look for a reason. 
Our God made no mistake.
He knit you together within the womb,
You're just what He wanted to make!

The parents you had were the ones He chose
And no matter how you may feel, 
They were custom-designed with God's plan in mind,
And they bear the Master's seal.

No, that trauma you faced was not easy;
And God wept that it hurt you so.
But it was allowed to shape your heart
So that into His likeness you'd grow. 

You are who you are for a reason.
You've been formed by the Master's rod. 
You are who you are, Beloved,
Because there is a GOD.

Sunday, March 25, 2012

Having A Blast Playing Wheelchair Soccer

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! And the faster her helper pushed her chair around up and down the gym, the bigger she smiled. Her dad watched from the sidelines praying her driver wasn't going to crash her into the wall.
Faith goes flying across the gym to help her teammates on the other side
check out the gigantic "soccer ball"
are soccer balls supposed to go up in the air like that?
While it was called wheelchair soccer, it was sort of a toss up between soccer and beach volleyball. The kids couldn't use their feet but instead used their hands and upper body to get the ball up and down the "soccer field." And the ball wasn't a soccer ball, instead it was a huge blow-up beach ball.

The kids were divided according to age and one age group played three games and the other age group played three as well. This gave the chair drivers a chance a take a much-needed rest. Brennan, Faith's driver wasn't too embarrassed to say that this was his cardio workout for the day.

Faith's driver was a real college soccer player! So great of these soccer players from the
University of Mary to volunteer to help the kids play!
This all took place at Centennial Elementary's school gym, which was very convenient for us. We also had our University of Mary students with us who are taking part in the family as trainers program. One is a physical therapy student and the other a nursing student. As usual, we were very impressed by their professionalism and how good they were with Faith.
Faith with her new friends from the University of Mary family mentor program
We're so glad that Dream in Motion is holding these events for kids who have mobility challenges. If it wasn't for them we would never know how much Faith loves wheelchair soccer!

The wheelchair soccer players gathered together at the end and were all told what a great job they did!

Wednesday, March 21, 2012

A Bit of Our Own March Madness!

It seems we have been having a bit of our own March madness with so much happening this past week. Last week Faith and I were both struggling with colds and sore throats which caused me to miss work and her to miss school. I was hoping she would be up to trying wheelchair soccer this past weekend over at her school but she just wasn't up to it.

As for myself, I wasn't sure if I would be up going to a Christian concert in Dickinson, but I went anyway. Me and my friend Sandy had front row seats and I even got autographs from the artistis themselves - Big Daddy Weave, MikesChair and Kerrie Roberts! I also saw another friend at the concert who recently moved to Killdeer - it was so cool to see her there!

While I went road-tripping to Dickinson, Faith spent the whole evening with her dad. I didn't get home until 1:00 a.m. and by 10:30 a.m. the next day, Faith really wanted her mom. I was sleeping in the bedroom with the door closed and all the sudden I heard Faith knocking on my door saying, "Mommy are you in there?" "Mommy wake up!" She had been lying on the floor in the office and scooted down the hallway to the bedroom. She was so cute that I really didn't mind that she woke me up!

The next day we ran some errands then met Grandma and Grandpa and Todd and Barbara at Bonanza for dinner. We had originally decided to eat at China Star but Faith really wanted some mashed potatoes and gravy. It was fun seeing them and we hope they make it to Bismarck again soon! 

A visit from Grandpa and Grandma!!
On Monday, after such a crazy weekend, I was not looking forward to going to work and Faith really didn't want to go to school. We both managed though and then after work I met Rob and Faith at Medcenter for an appointment with Dr. Ocejo.

Faith currently weighs 48 pounds and is about 50 inches tall. We got some really good advice from him on how to go about getting Faith to eat more solids, especially during lunch at school. They were both very excited to see each other. Between the two of them, me and Rob could hardly get a word in edgewise!

Yesterday we had to round up our car at the mechanic's because it hadn't been starting. Thankfully, it was nothing major. Our mechanic lives near the Healing Rooms, so it was convenient to stop in there for prayer. You can never get too much prayer!

Faith is currently in the middle of a week at school where they have different themes for dressing each day. Monday was dress up day and although she didn't want to, she wore her pretty pink outfit with the bow on the shirt.  Yesterday was black and white day and today was wacky today. Tomorrow is celebrity hair day (not sure what Rob's going to do about that one) and Friday is Faith's most favorite day of all - Pajama Day!
A tired girl on Wacky Wednesday!
Right now, Faith is very quiet sitting here next to me as I type this up. After a busy couple of days, she is exhausted. Once again, though, we are looking forward to a fun-filled weekend with the JOY Breakfast and wheelchair soccer!

Sunday, March 4, 2012

The Ups and Downs of Faith and Food

This past week, Faith did something for the first time ever at school - she ate lunch. She tried everything on her tray, which included a turkey sandwich, glazed carrots (which she ate the most of), strawberries and a few bites of a breadstick.

Because Faith still needs help eating solids, her occupational therapist had Faith and a few other girls eat lunch together in a separate room. Faith has made the comment when we feed her that "that's for babies" meaning she knows that this is how babies eat - being spoon-fed by someone else. Since we know she is sensitive to this, we decided not to have her join her classroom at lunch for the time-being. But the fact that she actually got to have her lunch replace one of her tube feedings at school was very exciting. The next day she got to eat one of her favorite foods - mashed potatoes and gravy.

Each day the kids at school get a choice between a chef salad, ham or turkey sandwich and a hot meal. Each of them comes with different side dishes. We knew that one day an enchilada bake would be too much for her so she opted for the turkey sandwich again.

Faiths loves to bake cookies - and eat them too!
While eating lunch has been a big step forward, it has not come without consequences. Faith became constipated and over the weekend on top of that, she came down with a cold. Yesterday she was not able to keep anything in her tummy and threw up throughout the day.

Now today, we are sort of back to square one with her feedings. This morning she tolerated about 4 ounces of Pediasure diluted with water which is a good sign. Hopefully we'll be able to get her feedings back on track and then try a few more school lunches this week. She may not be able to eat lunch everyday if she gets constipated - for her it's just one more thing that requires the perfect balance. She is on her way though, she continues to eat more solids at home and we believe that one day she will eat school lunches every day of the week without any negative consequences!

Hopefully since Faith got lots of rest this weekend, she'll have a good week at school.

Saturday, February 25, 2012

Great News About Faith's Hips

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!

On Tuesday, Rob took Faith to get her x-rays and then on Wednesday he took her to see the physiotherapist. Upon reviewing Faith's x-rays of her hips, the doctor could not quite believe what he was seeing. The hip looked like it was in the same position as it was five months ago. He was in such disbelief that he sent Rob and Faith back downstairs for another round of x-rays. Faith had to stay on the table in case the doctor wanted more shots taken. She laid there as patiently as she could for about 30 minutes before the doctor finally called them back upstairs.

The doctor may have been befuddled but we know that God is working in Faith's body and we give Him all the praise!

Even though her hips have remained stable, the doctor pointed out that getting the baclofen pump could still help Faith. Now that she is eating more and gaining weight, we feel better about going ahead with the decision. We will keep you posted!

Saturday, February 18, 2012

Time Flies in February

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 and 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 even having a tough time with startling when people clapped. And although she herself didn't have any lines, she was saying the lines along with the other kids when it was their turn to say their lines.
Faith jingling her bell
Faith joins in the singing with some of the other 2nd graders
This month we also had a parent-teacher conference which was turned into a mini-IEP meeting with Faith's teacher, her special education teacher, her therapists and the school principal. There are still some concerns with her having the ability to read from left to right but there are more ideas to try. Some really good news we got was that before Christmas, Faith was only getting between 40 and 60 percent on her trials with sight words and numbers 1-20. During the first three weeks of January though, she was getting between 80-100 percent on the same words and numbers. She continues to do well driving her power chair and is also getting good at using her buttons for her laptop at school.

Another area she is making progress is physical therapy. In January she received botox and that, along with much prayer, has enabled Faith to take 130 steps in her gait trainer. At home, she is asking me and Rob to help her take steps. We hold her up and support her while she "walks" from the living room into the bathroom or the living room to the kitchen. She is very good at using her right leg then her left and repeating the process until she gets to where she wants to go. Although it's tough on mommy's back, it's great for Faith!

This afternoon we will be meeting two students from the University of Mary who are studying nursing/physical therapy. Faith seems excited to meet them and if she's up to it, we are going to take her curling. She was up at 6:30 this morning so we'll see what her energy level is like.

Next week, she has hip x-rays and an appointment with her physiotherapist. I'm sure the words baclofen pump will come up again but hopefully (we are praying very hard) her x-rays show her hips are stable. We will also be celebrating Daddy's birthday next week and before we know it, February will be over and a very busy Spring will be upon us!
Another one of Faith's favorite activities is doing SKYPE with our friend, Kimberly

Sunday, February 5, 2012

Faith On Ice - Our Curling Adventure

What is curling you might ask? The only thing I really knew about curling was that in the Olympics, it was the sport where they use a broom to furiously brush the ice in order to make that round thing go in a certain direction. Then one day Faith brought a flier home from school that her physical therapist sent along announcing wheelchair curling at the Capital Curling Club (I had no idea Bismarck had their own curling club).

Faith on Ice!
Honestly, I wasn't too sure about it but Faith seemed like she really wanted to try it. She was mostly excited that she would get to go on the ice (must be the Canadian in her!) I, however, was not excited to get on the ice and was glad there were going to be volunteers to help Faith.

I'm not sure of all the terms (although my sister-in-law tried to explain it to me the night before we went) but basically one volunteer helped Faith hold a stick thing which they clamped on to a "rock" and then pushed her chair to help her move her rock. There was also something about a hogline but I can't quite remember.And by the way, they don't really use that broom thing in wheelchair curling.





Those rocks weigh 45 pounds each!
They practiced for a while then eventually formed three groups with two teams of two players for each team. Faith was the only little girl there but she certainly didn't care. She had a blast and quite often asked the volunteers, "Is it my turn yet?"

The event was put on a by a nonprofit organization called "Dreams in Motion" who try to get people with mobility challenges together here in Bismarck to engage in various sporting events. Faith is definitely looking forward to going curling again next week!

Faith tries to perfect her technique!