Showing posts with label birthdays. Show all posts
Showing posts with label birthdays. Show all posts

Sunday, October 29, 2023

No Longer a Teenager

Last week on the 25th, Faith celebrated her 20th birthday, which means she is no longer a teenager! That morning as we drove to her day program, she asked, "Mom how did I get to be 20 so fast?" In some ways, the time has crawled by, but in other ways, it has gone so incredibly fast. 

Faith turns 20! 
When it came to planning something for her birthday, she told me she didn't want a party. I knew though, that as soon as I didn't plan one, she would change her mind. And that's exactly what happened! A few days before her birthday she was asking me who is coming to her party. I was like, "What party?" 

I had decided to just have a small gathering at our apartment. I'm glad I didn't opt for a bigger one at a larger venue, mainly because of the weather. Up until last Wednesday, we had been having the most beautiful fall ever. The colorful leaves were still on the trees and the grass was still green. We had gone to the pumpkin patch on October 19th and it was 70 degrees!

Having fun at the pumpkin patch the week before! 

Faith makes a new friend.

Her dad came to visit her on the 21st and he had remarked what a beautiful drive it had been. But on Wednesday, fall had come to a sudden halt. The temperature dropped into the 40s and it began to rain. The next day, that rain turned to snow. We had squeaked in her birthday party just in time! 

Along with the party, she celebrated by taking her birthday balloons with her to her day program. Due to some of the dietary restrictions of some of her peers, she couldn't take cupcakes. Instead, she handed out glo-stick bracelets to some of her friends. She saved the cupcakes for her friends at therapy the next day. Some of her friends sent birthday greetings in the form of video messages and voicemails, which she loved! She also had a lovely visit over the phone from her grandparents in Canada.

Ready to party! 
Birthday cake! 

Thankful for the helpers! 

Fun with family! 

I'm so glad she had such a great day! 

She had a great time at her party, eating cake, singing songs, and having lots of laughs. One of my favorite parts was just sitting back and relaxing while one guest read her birthday cards, another helped her open presents, and another folded all the tissue paper and neatly put her presents in a pile. Faith had also designated a cake cutter, so I didn't have to do that either! 

I continue to be so grateful for those who blessed her with wonderful gifts like clothes, money, wall hangings, flowers, games, a squishmallow, and other fun things. I'm so glad her 20th birthday was such a success, not to mention safe from the winter weather! 

Getting ready for bed after a fun but exhausting day! 
We ended up getting 8.5 inches of snow and sadly it will stick around as it's supposed to stay cold for a while. I swear we just had winter! 


Sunday, October 30, 2022

Faith's Fun Birthday Week

Yes, it's true that Faith has been celebrating her birthday ever since last week! I mean, a girl only turns 19 once, right? And this is the last official year of her being a teenager! Last Tuesday when she woke up she said, "I can't believe I'm 19 already!" She was super excited because not only was it her birthday but it was Tie-Dye Tuesday at her day program and she was bringing cupcakes to all her friends there! 

During the drive to Mandan, she asked if she was going to get any flowers for her birthday. I kept telling her I really didn't know. (She is still upset with me for throwing out the flowers that her cousins had gotten her in May for her graduation.) 

I wasn't planning on getting her flowers, but I was pretty sure she would get at least one bouquet. She had a blast at her day program and on the way home she said she couldn't wait to see the apartment (she knew I was going to put up decorations for her.) 

She was so excited to come through the door and not only see birthday decorations but one beautiful bouquet of flowers from her respite care provider. (Plus her grandparents had brought another bouquet!) As we waited for our birthday party guests to arrive, she had fun watching and listening to birthday messages that friends and family had made for her. During her party, we opened gifts, ate some chili, and had cupcakes and ice cream.  

Me and the birthday girl!

Faith with Grandpa and Grandma

Dawn barely made it in the group shot!

The perfect shirt for T-Rex Thursday!

One of Faith's staff at her day program even did her hair for her!

Faith with her gifts and cards.
As you can see in the pictures, one of her gifts was a t-shirt with a Tyrannosaurus Rex on it.  On Thursday at her day program, they have T-Rex Thursday where the staff and participants can wear things with this kind of dinosaur on it. She only has one T-Rex shirt, so I found a few more for her on Amazon. When I explained to everyone why she needed more T-Rex shirts, my sister got so excited. She had helped to come up with that day when she worked there years ago! She was so happy to know they were still doing it!

The next day we went to therapy, where she has 3 sessions two days a week. She has occupational therapy, physical therapy, and we just started speech therapy. There is also a day where she has physical therapy before she goes to her day program. Not only did we deliver cupcakes to all the therapists at Kids in Motion, but she also got to get in on their wacky Wednesday by taking a group shot with them. Even though she only works with three of them, she loves seeing all the therapists (and admin assistants) and getting to socialize with them. 

They may be wacky but they are pretty amazing!! 

 Earlier in the week I had asked Faith if she wanted to go on a trip for her birthday. She had been asking to go on a trip over the summer but it just didn't work out. She was excited and asked where we were going. I told her we could go to Fargo and go to a Bison game! The only thing is at that time I didn't actually have tickets, because as I learned that reserved accessible seats were kind of hard to get. Thankfully, I was able to call the day before the game when they said more seats would be opening up. I got 2 tickets for us and 2 more for our helpers - my sister and great niece! 

Despite having a moment of high anxiety about the trip the evening before, she was raring to go the morning of the trip! We managed to get the van loaded up and then just cruised over to my sister's to pick her and Gracie. We made it to Valley City before stopping and still had plenty of time to get to the game, or so I thought. 

We arrived around 1:30 - just 30 minutes after the doors had opened and all the accessible parking spots were already filled! We managed to find a spot that wasn't too far away. I sort of parked in the middle of two spots so that we still had room to let the ramp down. I figured someone would be mad for taking up an extra parking spot, but there wasn't much I could do. Like my sister said, they need way more accessible spots! 

After unloading, we made our way to the FARGODOME but I had to run back and get Faith's food, which I had put in the back so it would stay cold. After we got inside, we needed to go upstairs where the family rooms were so I could get Faith changed and her feeding going. (Way to go FARGODOME for having 3 private bathrooms with adult-size changing tables!) 

After all of that, we ended up missing the very beginning of the game where the players come onto the field. It's probably good that we missed it though, cause it was super loud! They play "Thunderstruck" by AC/DC, plus they turn off the lights, have flashing green and gold lights, and several loud booms. I think that might have been too much for Faith! 

We found our seats just after the first quarter started. It's funny because when I watch football on TV, Faith could care less, but she really liked the whole live experience! We were sitting near some of the opposing team's fans (Illinois State Redbirds) so when they cheered, she would cheer. I had to try to help her know when to cheer. She got the hang of yelling "first down," and loved the frenzy of when we scored. (She could have done without the two loud booms after each touchdown). 

We had great seats!!

Right behind us!

These 3 had never been to a Bison game before!

So much fun!

 

We ended up leaving right before the end of the 4th quarter because I knew she was getting tired. Plus, I kinda wanted to get ahead of all the traffic. (NDSU won by the way!) On our way to the hotel, the directions on my phone took us this really weird route where we were going through all these neighborhoods and side streets, but we eventually found our way to our hotel. (I wanted connecting rooms and the only hotel that had them available when I called was one in way southwest Fargo). 

I was thankful my sister could come along because I needed her to help me lift Faith in and out of her chair. I would never be able to travel alone with Faith on a long trip or do an overnight by myself because I simply can't lift her.

On Sunday after getting lost again, my sister was able to get the Popeye's chicken sandwich she was craving (she got me one too and it was really good!) All in all it was a great trip and I'm glad to know it's totally doable.  Also, Faith had so much fun she wants to go again sometime! I'm proud of Faith for being such a great traveler and for doing so well with her 5-year old second cousin.

And now that her birthday is over, I think we are both looking forward to having a routine week!

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!

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). Unfortunately, at that time, the doctors believed that my Fontan cured my heart defect. There just wasn't enough research to tell them otherwise. When I was 19 years old, I was hospitalized with congestive heart failure. I never fully recovered, which is why in 1999 at the age of 25, I needed to undergo my fourth open heart surgery. Three months later, I had 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. 
 
About 5 months after I had my daughter, I needed to go back to the Mayo Clinic to get my pacemaker battery replaced. Because my heart  relied so heavily on my pacemaker, the battery didn't last as long as they normally do. This meant I had to get my battery changed about every 4 to 5 years. Eventually, as my original lead began to fail, I needed to get the battery replaced every 2 to 3 years. Finally, in 2021, my cardiology team thought it might be time to put a new lead in. They hoped by doing so, it would increase my battery life. 
 
I just had that procedure last June. I was so blessed my sister, Tesa could drive me to Rochester and look after me. I had the support of many family and friends, some of whom took turns looking after Faith while I was away. Even though I had some restrictions following the procedure, it was nothing like getting the original pacemaker! 
 
Despite how well I'm doing, it's hard to know what the future will bring. There are not that many people with double outlet right ventricle in their late 40's! I only know that I will continue to look after myself the best I can and keep up with all my cardiology appointments. The rest is in God's hands!  
 
By the way, to celebrate Congenital Heart Defect Awareness Week, I am raising funds for the Adult Congenital Heart Association. I am doing so to raise awareness for the fact that many adults born with congenital heart defects think their surgeries have "cured" them. This is not true, however, as most people born with congenital heart defects will need medical care for the rest of their life. Other adults with congenital heart defects fall through the cracks between pediatric and adult care. The ACHA helps adults find specialized cardiologists that treat adults born with congenital heart defects. In so doing, this organization improves the quality of life and helps extend the lives of adults with CHD. Please feel free to make a donation!