Thursday, November 12, 2020

Faith's New Van

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.  

Faith is all smiles about her new van!

Faith is ready to roll!
After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around. She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever! 

Faith inside the van.

Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith's stoma for her feeding tube. I'm glad to say we are making progress with getting her skin back to normal. 

We also used the van to take Faith to Inspire Collective, her homeschooling group, which finally started up this month! It is a very small group this year, but we are okay with that. Two of Faith's best friends aren't going this year, so we drove to their house so Faith could see them from a distance. It had been 8 months since we last saw them in person! 

After visiting them, we drove out to her grandparent's place. My great niece said she wanted a van likes Faith's for her 5th birthday! Faith has a few more upcoming appointments this month, and it so nice for me to take her to these appointments by myself. 

This van is such a huge blessing, and makes life so much easier. A few of my favorite features are the heated steering wheel and seats, as well as the remote starter. These features will help us get through out brutal winters! One of Faith's favorite features of the van is that the doors open and shut all by themselves. Of course we both love the ramp that comes out and goes back in with just a push of a button. One feature I have yet to show her is the DVD player! 

 




I will never take our van for granted and will always be thankful to those of you who donated to our NewWheelsForFaith fundraiser. There were also many people who shared the fundraiser on social media and prayed that this van would become a reality for us. It floors me that people we have never met also gave to or shared this fundraiser. I will also always be eternally grateful to my brother Todd, and his wife for everything they did to make this happen. We appreciate you all so much!

One more thing: for those who are wondering, the van is a 2015 Chrysler Town & Country with about 49,000 miles. The conversion is new enough that it is still under warranty. We got the van from Cummings Mobility in Albertville, MN. If anyone needs a new conversion van, I highly recommend them, as they were very accommodating and gave us a great deal!

Sunday, November 1, 2020

October: A Memorable Month and Birthday

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away! Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to help give me a peace of mind. 

They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself! 

I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the same icky, awful feeling.

Next, it was Faith's turn. The nurse was fully expecting Faith to fight the swab going up her nose. She held Faith's hands while I held her head in place. The lab technician put the swab up Faith's first nostril and I counted to 10. The lab technician did the other nostril, and I counted to 10 again. She didn't try to fight it or anything. She was so brave and didn't even cry! I was very proud of her! I told everyone afterward that she had done better than me. 

My brave girl!

It took four days for the test results to come back, both of which were negative. Faith did have a sinus infection so she began a round of antibiotics. It took her about six days of being on the meds before she finally started feeling better. 

A couple of weeks after she was finally better, I had to take her in to get the Mic-key button for her feeding tube replaced. When we had tried to put in a new button at home, we found out it was defective. Thankfully we had a second one, but that one was defective as well! We ended up having to put her old one back in. Because of this, the skin around her stoma became very red and sore. When I took her to the surgeon, she told me it wasn't infected, but there was granulation tissue that was beginning to form. She replaced it without any problem and prescribed an ointment for her skin.

During all of this, I was busy trying to finish raising funds for our new van. I really wanted to raise enough so we could get it for Faith's birthday. Amazingly, we ended up raising about $25,000!!! I am also applying for funds to help cover the conversion cost of the van. I will do a separate post about the van, but long story short, my brother Todd found one for us at Cummings Mobility and had it delivered to our front door 2 days before Faith's birthday!

Thanks to all the donations, New Wheels for Faith became a reality!

While preparing for the van delivery and Faith's birthday, I found out Bismarck was supposed to get our first major snow storm. I was concerned the snow was going to deter our birthday plans. Thank goodness we only ended up getting about an inch of snow but it did dip down to about 14 degrees F.

Even though the weather cooperated, the elevator in our building did not. Two days after I had taken Faith to get her button replaced, the elevator went out. Needless to say, I was pretty devastated. Without a working elevator we would not be able to get Faith downstairs to see her new van when it arrived. We also wouldn't be driving around to see her family and friends on her birthday. (A pandemic-friendly birthday plan I had come up with).

The van was still delivered, but instead of being able to get inside, Faith could only watch out the window when it arrived in the parking lot. We tried to make the best of things and had a tiny party in our apartment with cake and ice cream. For her birthday weekend, she did video chats and phone calls with some of her best friends and other family members. 

Happy 17th Birthday!

Faith with Grandma and Grandpa 



Faith's cousin and favorite dog even came to the party!


Faith's beautiful birthday flowers!

We went through the rest of the week with no elevator, and it is not supposed to be fixed until Monday or Tuesday. I have been in contact with our building manager and even the regional property manager. I think they are finally beginning to realize that we are in need of a new elevator! 

Despite some of the challenges and disappointments, my heart is filled with gratitude. I am so thankful for our van. I promise to do another blog post as soon as Faith is able to get downstairs and we go for a spin! I'm also thankful to the friends and family who have supported us during this challenging month and also for the many prayers. 

If nothing else, Faith's 17th birthday was definitely a very memorable one!

Saturday, September 12, 2020

New Wheels For Faith


Faith in her "new" van in 2011
It was back in August of 2011 that we got our first accessible van. Before that, we had a purple special needs car seat called the "Special Tomato." Eventually she got too big for her special tomato and we needed to graduate to an accessible van. We were thankful to have found one in Bismarck for a decent price. While it suited our needs, there were still some concerns. For one, the electrical system was really wonky, which affected the ramp. 

 Even with the weird electrical system, it got us to where we needed to go. We even had some fun family adventures like driving all the way to Toronto and back, and also to Winnipeg. The van also got us to some of Faith's medical appointments in Minneapolis and Fargo.

Despite its quirks, the 2006 Dodge Caravan was a good van. Except for when it rained. It seemed the electrical system went super berserk when it rained. One day we were on our way home from a physical therapy appointment in the pouring rain. We were driving down Century Avenue (one of the busiest streets in town) when the van stalled at the light. The van refused to start. Thankfully, a guy in a pick up truck who pushed heavy equipment around for a living, was right behind us. He managed to push our vehicle with his to our apartment. 

Faith on a trip to Fargo a couple of summers ago.

We put thousands of dollars into getting the electrical system fixed, but the only thing that seemed to help was to disconnect the ramp. This made transporting Faith very inconvenient, to say the least. While Faith's dad could still push her chair up into the van, I could not. We muddled through, however. It just meant that I could not really take Faith anywhere by myself. 

Eventually our air conditioning also went out. I thought it might simply need to be recharged but this was not the case. It was going to cost several hundred dollars to fix, so we just went without. When we had a choice, we chose not to take Faith anywhere on really hot days. Then there is the issue with the battery and not starting well in the winter. There are other issues, but I think you get the gist of it. 

I don't know if Faith's van will make it through another winter!
 

"Thanks everyone!"

As you can see, we have needed a new van for a while now. When I discussed our van issues with my brother Todd a while back, he suggested doing an online fundraiser. I honestly didn't know how I felt about asking other people for help to fund a new van for us, especially with the whole COVID mess going on and it being a hard time financially for many. After thinking about it for a long time, and praying about it, too, I felt we didn't have any other choice. Todd told me to write something up for a GoFundMe and he would take care of the funds, etc.

When we set our goal of $29,000, Todd was very optimistic about reaching it. I knew my brother was an optimist. I tend to be the opposite (sometimes). I thought it would be nice to reach $10,000. Needless to say, our efforts thus far have far surpassed my hopes and expectations!



I know there are many people in need of things right now, which is just one reason I'm so blown away by everyone's generosity! All I can say is THANK YOU!!! 

 

For those who have given, shared, or said a prayer, may this proverb ring true in your life: Whoever brings blessing will be enriched, and one who waters will himself be watered. Proverbs 11:25 (ESV) 

By the way, at the time of this writing, we are at $16,001 between on and offline donations, as well as 500 shares! We are well on our way to meeting our goal. Also, it would be a dream come true for Faith to have a new van for her 17th birthday, which is at the end of October!

Click here to donate to #NewWheelsForFaith or to share this fundraiser.

 


Tuesday, October 29, 2019

A Cold But Fun Filled October

As I'm writing this blog post, it is currently 25 degrees outside. With the windchill, it feels more like 12 degrees. That's cold for October. Even in North Dakota! Winter definitely seems like it's here. Earlier this month we had a historic blizzard that dumped 13 inches of snow on Bismarck and over 2 feet of the white stuff in other parts of the state. As a result, the public schools had their first official snow day. I was ready to give Faith the day off from her lessons at home, but she still wanted to do them!
First major snowfall of the year - in October! (Thanks mom for the pic!)
It could have been a snow day for Faith but she still wanted to do school!
It did warm up soon after and all the snow melted but the October blizzard created quite a mess for farmers and ranchers who still had crops in the field and cows in the pasture.

I was very grateful that we didn't have to go anywhere - for school or for work. I am still freelance writing from home. Recently, I began doing some freelance work for a local company called the National Day Calendar. I currently write their articles for the International days that get observed around the world. It's been a fun change of pace and much more exciting than writing about septic systems and other mundane subjects!

Besides homeschooling and freelance writing, Faith finally started Inspire Collective again. It's her most favorite activity in the world. She has made some of her best friends through this faith-based homeschooling group.

Faith's class learning about plant cell walls in science.
Faith's class checking the speed of their LEGO cars

Faith's LEGO car ended up being the 5th fastest out of 12 cars! I was really thinking her dad should have been there for this event, but Faith and I actually did pretty good!

Along with enjoying science and STEM, Faith also likes her history class. They are learning about one of my favorite time periods, which is the mid to late 1800's. I am thankful that she watches Little House on the Prairie, which helps with her comprehension of the subject matter.



This past weekend, we had a momentous occasion in our household as Faith turned 16! We ended up having a party in the lobby of our building with some of her friends and neighbors. Because we had to limit the number of people, my mom came up with the idea of having a 2nd party for just the family, which will be next month.

Despite the fact we already had plenty of people on our guest list, Faith continued to invite people in our building. One day we were sitting in the lobby and a lady who had recently moved in went to check her mail. Faith said hello to her so she came over to where we were sitting. She told us she is a nursing student. (Faith always makes connections with the care-giver types!). 

Faith ended up inviting her to her party. Not only did Faith's new friend show up, she gave Faith a very nice card with money inside. It was so incredibly sweet. Everyone who came to celebrate with Faith was so kind and generous. She received clothes, nail polish, art activity kits, gift cards, and even homemade cookies! We are truly blessed to have such wonderful friends and neighbors.

 A few of Faith's neighbors even brought their dogs!
One of Faith's favorite families!
Chris and Faith with her beautiful birthday bouquet.
Faith with her friends.  


Faith blowing out her birthday candles.
She did it!!! Happy Sweet 16 Faith!

Thursday, February 7, 2019

CHD Awareness Week: My Heart Story (So Far)


Grandma Dorothy holding me at 5 months of age
In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup.

Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said.

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley called the clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away.

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn’t sure what he was seeing. “There’s nothing we can do at this time. We’ll just have to wait and see. She most likely will need to have heart surgery someday.”

There was no Internet or access to medical information for doing research. My parents had no other alternative than to believe I would survive long enough to have surgery.

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June.

Dr. Katrapu had ordered another round of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole in her heart,” he told them. “This is common for babies. A simple surgery should take care of it.” He went on to explain that a diagnostic test called a heart catheterization would show any anomalies in my heart. “Unfortunately, we can’t do the test here in Bismarck. The closest place is the University of Minnesota Hospital in St. Paul.”

At six months old, I weighed only twelve pounds. My lips and fingernails were getting more cyanotic by the day. I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough.

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis–Saint Paul. They set out from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a place completely foreign to them. Dad drove down the highway and then on the Interstate with Mom sitting on the passenger side and me lying on a blanket between them, which was completely legal at the time. Not having me restrained in a car seat made it much easier to feed and change me during the twelve-hour drive. The biggest city they had ever visited was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital.

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked looks on my parents’ faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They explained they needed to locate the hole so they could operate the next day. I had been gone for over three hours when Mom and Dad, stuck in the waiting room, started to get anxious. Finally, five hours after my parents had last seen me, Dr. Bessinger gave them the grim news.

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I would eventually suffocate to death. He warned my parents it would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties.

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes.

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They were forced to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything ever changed someone would get in touch with them. Four weeks later, the one phone call they had been waiting for finally came.

Dad had just walked inside from milking cows. “They called and said we could come and get Cari,” Mom told him.

They dropped my brother off at Grandma and Grandpa’s, just down the road, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked like a normal, healthy baby. My pinkish skin plus the weight I had gained nearly shocked Mom. “It’s hard to believe this is the same baby,” she quietly remarked to Dad.

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours I was discharged and Mom and Dad were back on the road bringing me home.

Celebrating my 45th Birthday with my daughter!
Four years after my first surgery, I had another one, and then at 10 my Fontan. In between surgeries I had been officially diagnosed with Double Outlet Right Ventricle (DORV). In 1999 at the age of 25, I had my fourth open heart surgery and 3 months later, a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 

I know my heart journey is far from over, as this spring I will most likely need to go to Mayo for a heart catheterization during which they will give me a Fontan "tune-up" and possibly another surgery to have my pacemaker completely replaced. After that, I'm not sure what the future will bring. What I do know is that through it all, God will be with me, just as he has been all these years.

By the way, my nephew, Preston is raising money for the American Heart Association. On his donation page he says, "I'm excited about raising money for other kids - kids with hearts that don't exactly work right and to help fund new medicines and treatments to be discovered." Research in the area of pediatric cardiology is helping the one in 100 babies born with CHD every year to live into adulthood and have a high quality of life! 

 

Wednesday, January 2, 2019

My Top 32 Inspirational Memes of 2018

At the beginning of 2018 I had come up with the idea to post an inspirational meme for every day of the year. I called it #365DaysOfInspiration. Part of the reason for doing so was because of all the negativity and bad news that seemed to be flooding Facebook. I figured my inspirational posts could be at least one positive thing people saw each and every day.

Little did I know at the time how much my Facebook friends would come to appreciate these little nuggets of inspiration. One lady even told me that she wrote every one of them down in a little journal. Another told me these little blips of inspiration kept her going on some of her most difficult days. Many people shared that whatever I had posted for the day was just what they needed.

After faithfully posting for 365 days, one of my friends said, "Thank you for the 365 inspirational posts. I enjoyed the variety of quotes, often feeling challenged to think more about it through the day. I know this took a lot of time and effort. So thank you, Cari, for enriching our lives in this way!"

There are a million inspirational memes out there, and in my choosing the perfect ones, I tried to be careful that the message was never contrary to Scripture. Sometimes, the meme was more funny than inspiring, but I figured, we all need to laugh more!

Some people have asked if I planned on posting inspirational memes again in 2019. While I enjoyed doing it, I decided not to, mainly for the simple reason of trying to spend less time on Facebook. So while you will see more memes from me throughout 2019, it certainly won't be every single day!

Like a true nerd, I kept track of which of the 365 Days Of Inspiration received the most likes, shares, and comments, etc. Here are the 32 that came out on top!

#32


#31


#30

#29


#28


#27


#26


#25


#24


#23


#22


#21


#20


#19


#18


#17


#16


#15


#14


#13


#12


#11


#10


#9


#8


#7



#6 



#5


 #4



#3



#2


#1



Hope you all have a wonderful 2019 and
may you be the inspiration and encouragement 
that others need every day of the year!