Friday, November 30, 2012

Faith's Fun Week at School

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. Here is what her fun week looked like:

Monday - Faith's favorite day of all - Pajama Day!



Tuesday - Backwards Day - even Faith's smile is backwards!
Wednesday - Tie Dye Day!
Thursday - Faith sportin' her school spirit - Centennial Roughriders
Friday - Wacky Day!

Sunday, November 25, 2012

November 30 is Newborn Heart Defect Screening Awareness Day

November 30 is Newborn Heart Defect Screening Awareness Day. I think it is very important to spread this awareness, especially since congenital heart defects (CHD) are the number one birth defect in babies. CHD affects 8 out of every 1,000 newborns and is responsible for more deaths in the first year of life than any other birth defect. A simple screening, which is done via pulse oximetry done within the first 24 hours of the baby's life, could prevent such deaths from happening. One such death was a five-day old baby named Cora

I was born with a congenital heart defect and nobody knew until I was about five or six months old. My mom began noticing that the simplest act of eating from my bottle completely wore me out. And when my lips and fingernails began to have a bluish tinge to them, she knew something was very wrong. Unfortunately at that time we lived on an Indian reservation in Wolf Point, Montana so there weren't a lot of specialists in the area. The closest one was in Great Falls and that doctor told my parents there was nothing that could be done. Thankfully, my parents took me to a pediatric cardiologist in Bismarck who confirmed I had a heart defect and that I needed surgery.

Things are so much different than they were in the 1970s. At the time, there was hardly any available information regarding congenital heart defects and the technology was not there to detect such defects. Times have changed and since these screenings are now available, I strongly suggest that if you have a newborn or are going to have a baby get him or her screened for a heart defect.

Thursday, November 22, 2012

What? No Whip Cream for the Pumpkin Pie?

Me and my little family of three have a Thanksgiving tradition of going out for thanksgiving dinner on our own. This year, though, we invited another family of three to join as as they had done years ago after we first moved to Mandan. We had met this family at a church in Mandan and have recently reconnected with them as we all now go to New Life Church.
So thankful to be reconnected with this wonderful family!
So today we headed out to one of the buffets at a local hotel. I was looking so forward to eating a delicious turkey dinner and having pumpkin pie with whip cream for dessert. As we walked into the dining room, however, the first thing I noticed was that the pieces of pumpkin on the dessert tables were not topped with whip cream. I wasn't going to complain though, as I didn't want to appear to be ungrateful on Thanksgiving of all days.

As we sat around the table, enjoying our delicious turkey dinner I couldn't help but notice that nobody was taking the bare pumpkin pies set out on the tables. As I finished my second helping of turkey, mashed potatoes and gravy, I began to think hard about my dessert choice. Was it even possible to eat pumpkin pie without whip cream, I wondered.

I couldn't hold back any longer, I had to say something. "I'm a little bummed that there is no whip cream for the pumpkin pie." Apparently, I wasn't the only one. All the sudden the family we were with started getting every server's attention asking if there was any whip cream for the pumpkin pie. They said they would check but nobody came back with any whip cream. Finally, Peg decided to hunt someone down in the kitchen.

Just as she left, a server walked by with a piece of pumpkin pie with whip cream! I almost yelled, "Hey there's a piece of pie with whip cream!" I wasn't the only one who noticed. Jeremiah, a college football player, was quick to take action. "Excuse me, ma'am. Could we get some whip cream for our pie?" She seemed to be bothered by his question and curtly replied, "hold on just a minute." (Before seeing evidence that there was whip cream in the building, he had been thinking of using the cookie salad as topping for his pie.)

We thought for sure she was never coming back. But she did return with a huge bag of whip cream and Jeremiah asked if he could just have the whole bag. I think he was serious! He had a piece of pie in front of him and she promptly topped it with a little squirt of whip cream. He was not shy about asking for more. He ended up having three or four pieces of pumpkin pie all topped with extra whip cream. 

She then went over to the table of bare pumpkin pies that were just sitting there, amidst one lonely piece of banana cream pie. As she began topping the pies with the wonderful, white whip cream, throngs of people came over and grabbed their piece of pumpkin pie.
Pumpkin pie now topped with whip cream!
It was a great dinner and we really enjoyed spending time with our friends. Faith spent a lot of time giggling and laughing eating mashed potatoes and gravy, cookie salad and even a few bites of turkey. And of course some pumpkin pie with whip cream!
Happy Thanksgiving!
It was tough getting Faith out the door, but once we did she had a lot of fun!
Cowboy fan in training?

Saturday, November 17, 2012

A Rough End to a Challenging Week

We made it to Saturday. It has been quite the challenging week.. While it started out great, it just seemed to downhill as the days went by. After having four days off from school, Faith got her haircut on Monday evening followed by a trip to the Healing Rooms where they were celebrating their 10 year anniversary.

Me, Rob and Faith all went in for prayer together and Faith received the scripture, "Then shall your light break forth as the morning, and your health shall spring forth speedily: and your righteousness shall go before you; the glory of the LORD shall be your rear guard." Isaiah 58:8.

They always write down the scripture verse for us on a piece of paper so we can take it with is. Faith was so excited, she grabbed the piece of paper and yelled, "I can't wait to show Lola my scripture!" Lola is one of the directors of the Healing Rooms and was sitting at the front desk that day.
Faith with Bob and Lola - directors of the Healing Rooms of the Northern Plains
Tuesday, however was a different story. Last weekend we had a snow storm during which we received freezing rain first then 10 inches of snow. The plow had come through our parking lot but didn't do a very good job and needless to say, our van couldn't get out of its spot.

Rob and I had to walk Faith down to school on the very icy, snowy sidewalk. When we made it back from our trek to school, Rob and I tried to get the van unstuck. He rocked and I drove but to no avail. I went upstairs and called my supervisor because I was running late for work. Our neighbor kindly helped us push the van out and Rob spent the rest of the day shoveling.

The next morning, while Rob went to get the van ready, I wheeled Faith to the elevator only to find out it wasn't working. A handicapped-accessible building with no working elevator is not a good thing! I ran Faith back to our apartment, locked her inside then found Rob. He had to take her downstairs first then he went back up for her chair. Needless to say, she was late for school and I was almost late for work again!

That afternoon, Rob and I had our yearly appointment with the Social Security people here in Bismarck to get her re-qualified for her SSI. Thankfully, the appointment went well and the day improved from there. Since I took that afternoon off form work, Rob and I got a chance to go out and eat before our Bible Study that evening in which we had an awesome session on Relentless Prayer.

Along with all of this going on, the week was another very stressful one at work. We had a recent conversion with another health insurance company which is always a little challenging but even more so when we barely receive any training for it. Finally Friday came only to have Faith come down with a cold. Of course when she is not feeling well, she wants her mommy so I took care of her last night and neither of us slept very well.

Thankfully, we had respite care this morning so I did get a chance to sleep. I felt bad because I missed the JOY event, Continuing Prayer, Care and Share. And I also missed watching the Bison's last home football game, which they won. Faith seems to be feeling better as the day goes on so hopefully tonight we'll all sleep well and make it to church tomorrow morning.
Spectacular sunsets like this always remind me of God's awesomeness
Through all the good and bad this week, one thing is certain - God is with us through it all and he cares about our challenges and every detail of our lives. I'm so thankful we can look to Him for strength in our times of weakness and for joy in the midst of our struggles.

Sunday, November 11, 2012

Another Battle Ensues

It seems we have won the battle over Faith getting up and getting ready for school in the mornings. She is no longer protesting and wakes up in the morning excited to bring a "special guest" to school. Last week she pretended to get Clifford the Big Red dog ready for school but he couldn't fit in our van so he had to ride on top. She also talks about how when she gets to school she is going to help take care of one of her friends who is also in a wheelchair.
Faith has been doing great getting up and ready for school in the mornings!
A few things are helping Faith with her morning routine. One she is getting more rest and not feeling so fatigued throughout the week as she is only going half-days on Tuesdays and Thursdays. Another is that we have been feeding her Pediasure with 1.5 times more calories that what she has gotten before. This is helping with both her energy and her weight. Rob took her in to get weighed last week and she has gained almost a pound since getting the added calories.

While the mornings have been going great, we have a new battle to face at night. Getting her to bed has become our latest battle - one we thought we had already won. Sometimes as a ploy to get her own way, she tells us she wants more food in her tummy so she can stay up and watch her iPad.

I have a friend from college who has posted accounts on Facebook that she has actually had to pin her child down to keep her in bed at night. I'm sure if Faith could, she would be getting out of bed. The most she can do though is try to scoot herself off the bed. And that, along with making a lot of noise is the battle that ensues at night.

This past Friday night the only way we could get her to agree to go to sleep without having a nighttime screaming fit is for me to lay down in her bed with her. At midnight, she was still wide awake. I finally gave up and Rob took her out of bed and sat up with her on the couch. She screamed for about ten minutes before finally drifting off to sleep. Thankfully, none of us had to get up and go anywhere the next morning.
Faith ends her evening with her last feeding of the day while watching her ipad
Last night she was still protesting going to bed but it wasn't nearly as bad as the night before had been. We'll see what tonight brings. She doesn't have school tomorrow but her mom has to work and for that, I need my sleep!

Faith can be very strong willed - which has its good and bad points but we are both thankful that she is a fighter nonetheless. We just have to help her find the right things to fight for! And fighting going to bed just isn't one of them.

Saturday, October 27, 2012

Fun-Filled Birthday

For Faith's birthday this year, we decided to keep it pretty low-key. And even though we really didn't do a whole lot, Faith had a very fun-filled birthday. On Thursday, she took her favorite snack - goldfish crackers - to school to share with her classmates. Then after school she got to play her new Wheel of Fortune game on the PS3 with daddy. This is what I found when I came home from work that evening:


Of course Faith wanted to play her new game with me, which I very happily did. During all of this we took a little break to talk to Faith's Grandparents from Canada who called to wish her a Happy Birthday. We opened her presents from them while both Grandmother and Grandfather were on speaker phone.

Friday evening was another night of playing Wheel of Fortune then on Saturday, we finally had a chance to have birthday cake, for which Grandma came over. We also opened some cards from her aunties and their families. We've definitely had a great three days of celebrating Faith's 9th Birthday!

Faith loved blowing out her birthday candles!
Our birthday princess!
Faith and Grandma!
All tuckered out after all that celebrating

A song dedicated to Faith on her birthday because God has been so faithful:


 

Tuesday, October 16, 2012

Parent Teacher Conference

It is so hard to believe that it is already that time of the year - time for parent-teacher conferences.  I don't know why but I always get a little emotional at these meetings. I think it might be due to the fact that as Faith gets older it becomes more apparent that Faith does not have the same skills as her classmates - and I become very aware of her disability. In fact, due to a new grading system, Faith is probably going to be graded as a first grader instead of a third grader. But at the same time I am so proud of Faith for how well she is doing.
Faith at school with her dad.
Those around her at school seem to be noticing a difference in her wanting to be at school rather than asking when she can go home. It seems to correspond to the time that I began staying home in the mornings to help her get ready for school.  I'm not exactly why this is because she still fights some mornings about not wanting to go to school but I'm glad to know that once she gets there, she does a great job. The other day after school I was sitting with her having her tell me about her day and she said, "And do you know what else I did today at school today mommy? I gave everyone my personal best!"
Faith getting wheeled to her classroom by her morning aide
Her speech pathologist told us how she goes over the class's vocabulary words with Faith and how she helps Faith to learn the words. Every week she learns three different words and going back, Faith has remembered every vocabulary word she has ever learned - except for one. She can't seem to grasp the word "downtown." Instead Faith keeps saying "boomtown." I guess she's thinking of western North Dakota!

Her teachers also noticed that when Faith is listening to someone who is speaking with the same tone of voice for a long period of time, Faith loses interest in listening. They notice that the more animation and the more inflections one is using, she remains more attentive. This can be a little problematic when she is trying to learn things on her computer by listening as a lot of the voices on the computer programs are somewhat monotonous. They also said every once in a while they have trouble getting her to do her tasks, including driving her powerchair. When her teacher said she can be a little stubborn sometimes, Rob replied, "She comes by it honestly!"

Faith with her special education teachers whom she's had since kindergarten
For the past couple of weeks Rob has been going to school on Tuesdays and Thursdays to pick her up early. We are trying to see if this helps to alleviate her fatigue during the week. We have also changed her two afternoon feedings to Pediasure with 1.5 times more the calories than she was getting in the past. We are hoping this will help her gain weight along with having more energy. We have seen a few digestive issues with this new formula but nothing major.  All in all, although there are still concerns with her energy level and some struggles in the morning, she seems to be doing well in third grade!

Here is a letter that her teacher shared with us today that was written by Faith with the help of one of her aides:

Dear Mom and Dad: 

Let me tell you about the first 30 days of third grade. My favorite thing about third grade is to learn. I also enjoy listening to Mrs. Ternes read to the whole class. We are reading Charlotte's Web. My favorite books to read are stories about Arthur. Reading is my favorite subject in school. Snack time is another favorite activity. I really like crackers the best. 

In gym, I like working with Judy. (Her physical therapist). I like to sing with Mrs. Hall in music class. I like third grade and all my friends here at school. 

Love, 

Faith