Saturday, September 29, 2012

Faith's First Hayride

I honestly didn't know if we were going to make it to the hayride last night. Faith had been having a somewhat tough week again and the medication we were giving her for the bacteria in her tummy was causing Faith to nearly throw up. I canceled Grandma coming for grandparents day because I just wasn't sure Faith was going to be up to it.

Thursday afternoon Rob went to get her early from school and she was able to get some good rest. It helped because Friday she woke up smiley and in a great mood ready for the day. We promised her that next year both Grandma and Grandpa will come to Grandparents Day since they will be living here!

It worked out well for Rob to drive me to work then he and Faith came and picked me up and headed off into the country for Faith's first hayride. When we first told her about the hayride, she exclaimed, "just like Little House on the Prairie!" Well, it wasn't exactly like Little House as the wagon was actually more like a long trailer pulled by a truck instead of horses! And although our ride was very bumpy, it was probably nothing like it was back in those days!

A couple from our church graciously opened up their home to whoever wanted to come out for the hayride. They work with people with disabilities so their home is very wheelchair accessible. They even made getting onto the trailer for the hayride so accessible that a lady in her powerchair was able to come along for the ride!

Before the hayride, we had a wonderful dinner of hamburgers, brats, salads and lot of desserts. Faith could have done without the eating part - although she did eat some crackers and angel food cake - she just wanted to go on the hayride.

It was a rather warm evening with the temperature near 80 degrees. But those who participated in last year's event were thankful for the warmer weather as the year before it was quite chilly and they had to don their winter attire. This year, even after the sun went down, the temperature remained in the upper 60s.

Before getting Faith on the trailer, Rob made sure she was going to be as safe as possible. I held onto her while he wheeled her chair up the makeshift ramp then he and some other guys latched her chair down as tight as they could. Rob then carried Faith up and put her in the chair. She was pretty excited! While she had her chair to sit in, the rest of us bumped along on 900-pound square bales.
Faith enjoying her ride through the country!
As we got going, Faith became more and more tired and was ready to head back home.Eventually it got completely dark and the moon was out beautiful and bright and to her, that meant it was bedtime. Needless to say, we didn't stick around for the campfire.

When we got her home, the first thing she wanted to watch is Little House on the Prairie. We didn't think it was a good idea for her to have her feeding on the bumpy hayride so we had to wait until we got home to do it. She didn't get done until about 10:30 and as I was getting her pajamas on, she was falling asleep. As soon as I laid her in her bed, she fell asleep - it is a rare event for her to fall asleep so quickly!
The hayride reminded Faith of Little House on the Prairie
Unfortunately, I was not able to take very many pictures because my digital camera broke so I can no longer insert a disc. I think The max number of pictures the camera holds is eight. I really wish I could have taken more to capture the whole event.

It was a great experience enjoying time out in the country with Rob and Faith (my two city slickers). We got to pet some dogs, see some kitty cats and cows and go on a hayride through the sunflower fields on a beautiful fall evening. To me, it felt like home and it was a wonderful feeling!

Friday, September 21, 2012

Concerns for Faith

This week has definitely been interesting for our family. I started my new work schedule on Monday and it was so wonderful crawling into bed with Faith in the morning and gently waking her up. When she realized I was in bed with her, she said, "Mommy are you getting me ready for school today?" I pretended not to know how to get her ready for school so she proceeded telling me what to do and in what order. When I gave her a kiss goodbye she had the sweetest smile on her face.
Me and my sweet little girl
Rob was able to drive me to work since he needed the van that day. It all worked out perfectly and I was so happy to have spent the first part of the morning with Faith. Now fast forward to Thursday. Faith woke up saying she didn't want me to get her ready for school and when I tried to start the routine she became quite upset and demanded me to call the school to cancel. Where oh where was my sweet little girl?

Her fit escalated to screaming and yelling for over an hour. It was impossible to bend her into her chair as all of the high tone in her body was operating at full force. I felt really bad when I left Rob to deal with her on his own but there wasn't much more I could do.

Friday morning went better and she only went to school for half the day. In the afternoon she had an appointment with her pediatrician and then after that she was fitted for new foot orthotics. At her doctor's appointment, Rob discussed our concerns about her fatigue from a full week of school, her extreme gassiness and some feeding issues. He gave us a prescription to deal with her overly gassy tummy and suggested giving Faith a few afternoons off from school during the week.

Because she is constantly fighting her tone all day long trying to do things like drive her chair, work on her computer and keeping her head up, she uses much more energy than her classmates. She burns her calories faster than they are given to her. No wonder she runs out of steam at the end of the week!
This photo was from a few years ago when Faith was fitted for her last pair of orthotics.
I am really concerned about her fatigue and I'm worried about her weight as well. The sensible solution would be to try and get more calories into her but this usually results in negative digestive consequences. Her body can so easily get thrown off and out of balance. Soon, we're going to be starting another kind of pediasure with added protein and I really hope that helps.

After her doctor's appointment, Rob took her to get new foot orthotics. She may not be getting bigger around the waistline but she is getting bigger feet! It is sort of a long process that involves cold, gooey paste-like stuff getting wrapped around her feet and just above her ankles. She was very patient and was glad to see everyone at pediatric rehab again. Since starting her therapies at school, she doesn't go over there as much anymore. Afterwards, she had to go home for a quick feeding, then they came to get me after work. We made it home just in time to watch Wheel of Fortune.

I'm thankful it is the weekend so Faith can get some rest. For me, I'm going to be spending a lot of time praying for wisdom on how we can best help our daughter at this stage in her life.

Tuesday, September 11, 2012

Tuesday Tidbits - Home, Work and School

I really can't believe it is nearing the middle of September already. Time flies though when there is so much going on! It seems that once school starts our schedules go on overdrive!

I am very thankful to report that Faith is really enjoying third grade! She is back to driving her power chair at school and it is nice that her classroom is on the main floor so the only class she takes the elevator for is music. She really loves her teacher and this year she has one new instructional aide and also one new special education teacher. The special education teacher she has had since kindergarten had a baby in the spring so she is only working part-time.
Faith in her third-grade classroom
Unfortunately I was not able to attend her IEP meeting but Rob was able to go and it went pretty well. It is great to know that her principal, teachers, aides and therapists are all working together to help her accomplish her goals for the year.

They are going to focus more on learning through audio rather than visual - she has such great memorization skills when she hears something. Reading is still very challenging and she has not made a lot of progress learning visually. We won't give up on that though and are still praying she will be able to read one day!

Last week she had a doctor's appointment with her pediatrician and I was disappointed to learn that she has actually lost a couple of pounds since trying to feed her more solids and less pediasure. She is so skinny - only weighing 47 pounds. The hard part is she is so tall which makes her look even more skinny. (Part of it is genetics, I know.) Although her pediatrician is not overly worried about her weight, we are going to be trying a different type of enteral formula that contains more protein to see if that helps.

As far as work, I am going to be trying a new schedule next week so that I don't have to be there until 9:00 a.m. I can't believe I am trying this because I used to love my shift when I started work at 7:00 a.m. so I could be home at 4:00.  But I do miss seeing Faith off to school and by going in at 9:00 this will give me the opportunity to see her in the mornings plus it would give Rob the option of driving me to work if he needed the van that day. (Our Hyundai is not very reliable these days.)
Me, Rob and our Supergirl at our church picnic
Rob and I have started going to a small group study at our church (New Life) on Wednesday nights. I like to get involved in a women's Bible study in the fall but I'm so happy me and Rob are doing this together. It's is a video/book series called Relentless: The Power You Need to Never Give Up by John Bevere.

Although the church offers childcare so that couples can attend together, it is great that we have respite care available so that Faith can stay home and get ready for bed. A few other events I am looking forward to is the first Java JOY of the season and the Beth Moore simulcast at First Evangelical Free this Saturday

I know many look forward to football during this time of the year - I don't watch much NFL but I love watching the NDSU Bison football games on TV. I so wish I could go to a game at the Fargodome but the tickets are all sold out for this season. I will be cheering them on from home to win another national championship!

Friday, September 7, 2012

Celebrating Ten Years

In the year 2000 I rededicated my life to Jesus while living here in Bismarck, North Dakota. Just two months later I moved to North Carolina with my sister, Tesa. While in North Carolina, I made the decision to not do the dating thing and prayed that God would lead me to the man I was to marry.

To my amazement, that man happened to be living in my hometown of Watford City. I met him while going home for a long weekend just before my 28th birthday.

In April of 2002, I moved back home and one day while Rob and I were driving home from having dinner in Killdeer, we saw the most magnificent double rainbow while going through the Badlands.

It was an unspoken sign to both of us that we were meant to be together. We married on September 7, 2002 on the edge of those same Badlands in a little country church. In December we drove all the way to Toronto, Ontario - Rob's hometown - for a second wedding reception.Our life was a little crazy when we first got married as we were trying to run a business and before our one year anniversary, I became pregnant with Faith.
After our wedding reception we drove to Mountain View, Alberta for our honeymoon.
As I look back on these ten years, I see a road with some rough spots, a few unexpected curves and some detours along the way. I'm so thankful that through prayer and His word, God gave us a road map to help us find our way!

Though our journey has had its challenges, I'm thankful that we have taken the ride together and have been able to experience joy, laughter, understanding, friendship and love.

Today as we celebrate our tenth anniversary, I'm even more ready than ever to keep on truckin' and see what God has in store for the rest of our lives together! 

Click on the video to hear a song we had in our wedding: