Nicholas Updates 2018
December 31, 2018:
Another year is quickly coming to a close. As we reflect on our many blessings with a grateful heart, we know that life is not just comprised of clips from a highlight reel. There are also regrets, sorrow, and hardships. And although the new year allows us to leave some of it behind, let us never wish it to be forgotten. Instead, look upon the compilation of moments as a catalog of our life’s story that has brought us the ability to give voice to the next chapter that awaits us.
Wishing you all love, hope, happiness, health, and success in 2019! Happy New Year 🥳
December 29, 2018:
This picture is everything. This kid makes my whole heart smile.
I love how this picture captures the silly side of Nick’s personality and the joy he has brought into our lives.
December 26, 2018:
Made a visit to Grandma’s in Ft. Meyers over Christmas. We went swimming today, ventured out to a tiki hut for a late lunch, and are finishing up the evening by relaxing out in the lanai.
Tomorrow we have plans to go to the beach to find shells. It’s also big brother James’ 18th Birthday! Crazy how fast times flies by, it seems like only yesterday that James was Nick’s age. Savor every minute, they grow up too fast!
December 24, 2018:
We recently traded in our RV for another one a few days ago. Our last one had A LOT of issues. We always tried to make the best of everything that came our way but we always kind of felt that we had gotten a lemon. Our new home on wheels has been amazing and it’s safe to say that everyone has been enjoying the extra space. We’ve already settled in nicely and just in time for Christmas.
So today is Christmas Eve and as we went outside, there was no snow in sight. It was both a little sad but also completely wonderful because the kids were able to be out and run around. We improvised this year with decorations. The kids made a wreath made of their handprints and we also managed to make a paper tree, complete with a string of twinkle lights. We set it up next to our fireplace so we can enjoy it as we watch Christmas movies as we sip on our marshmallow loaded mugs of hot chocolate tonight.
We will also be making a batch of convection oven cookies for Santa. We made a test batch the other night and they turned out awesome. It was our very first time using a microwave convection oven and now I’m excited to experiment with all sorts of recipes.
Although we missed seeing family and friends this holiday season, our whole world is in the faces in this RV and home becomes anywhere we all are.
Our hearts and cups runneth over. Wishing you all the love, peace, and joy of the season!
December 6, 2018:
Happy St. Nicholas Day! 🎅🏼
We started our morning by dropping off gifts to the Arnold Palmer Children’s Hospital through our Little St. Nick’s Toy Drive program. A big Thank You to all our donors for making this annual event possible!
Cindy from Child Life said that our toys will be a part of their Santa sacks this year. Huge sacks are filled for each hospital floor, then given to the nurses the night before Christmas. The nurses secretly distribute them throughout the night so that the children wake up to gifts ❤️ We are so incredibly thankful and blessed to have the opportunity to help give back and bring comfort to the children and families in the hospital.
By giving, we receive the greatest gift.
November 30, 2018:
Yesterday a “knock, knock” sounded on our door. We opened it and to our surprise it was Grandma Kathy! We planned on going to Hollywood Studios for the day but changed our plans to spend the day with Grandma instead. We decided to go to Disney Springs to walk around.
Nick wanted to walk the entire time we were out. We kept encouraging him to take little breaks and sit in the stroller but his toddler stubbornness kicked in and he just trucked along. We love watching him discover and enjoy his independence.
We decided to head back to the RV for dinner instead of eating at Disney Springs. It’s much cheaper and we figured easier because we can contain the kids in a safe environment. We ordered some food and relaxed with a few glasses of wine.
The morning came and Grandma stopped over for some coffee. The nice thing was that she could just walk over because she stayed in a cabin at our resort. We said our goodbyes as she was headed to her place in Fort Meyers. It’s only about 2 hours away from us so we will plan a visit there around Christmas time.
Today, we decided at the last minute to walk around Epcot. the kids particularly love the maze at the England pavilion. We got an annual pass to Disney which gives us the freedom and flexibility to come and go to whichever parks on whichever days work for us. It’s been so nice to not stress about fitting everything in on one day. We can just go walk around Animal Kingdom as an outing for a day, specifically fast pass a ride that we may have not been available to schedule before, or just walk around Epcot just for a foodie day. We are so excited to be able to experience Disney at this slow pace.
Are we being a little Disney excessive, maybe. But I would hate to face hindsight somewhere down the road with any bit of regret. We are tying to live our best lives now so we never have to look back with remorse.
Don’t wait to live the life you imagine, Have a great weekend!
November 27, 2018:
Guess what we did today? Disney World, our home away from home!
Some people have asked if we are tired of Disney yet. To which we say, is that even possible? Our kids love it and we are kids at heart so it really is the best place on earth!
November 23, 2018:
We spent the night in Florida last night. We were looking ahead and only thought to go as far as Mississippi but as we were going, we realized that it was only a couple of hours more. So we pushed on and had our sights set on a military rv site in Mary Esther, FL. It was a gamble to try and stay there. Since it was a holiday, none of the military parks had workers in the offices to check availability. It was a no reservations and on a first come first serve basis. We thought maybe since it was Thanksgiving there would be some open spots. We thought wrong.
Jimmy was exhausted of driving and it was pitch black out. We drove through the park and it was completely full. Feeling deflated, we got back out towards the entrance and stopped for a few minutes so we could locate another place to try. We found another military site and it was another 20 miles further so we headed out into the darkness.
The second stop was actually on the military base. When we pulled up to the gate, the security forces told us there were 2 camps on base and gave us some vague directions and said there would be a dirt road across from the BX (like a department store). It was our first time on Eglin AFB so it seemed we were just driving around blind. I will say, in my experience, AFBs are nicer than Army bases as far as facilities but the Army bases are so much easier to navigate because they seem better planned and have better signage.
We tried to follow the few signs we could find. Finally, we came upon the BX and so we started looking across from it. There was definitely a field of wooded trees so I felt confident we were in the right area. Now, just to find the road that leads into the park. We saw one that wasn’t marked and looked pretty shady. Like the kind of road you would take in the final scene of your character’s life in a horror film. We opted to keep going and about another mile down saw a small sign that said what we were looking for. We turned into the park. We found an empty spot and pulled in. As we were pulling up we noticed that a sewer line was still attached, this was someone’s site already. We stayed parked and disconnected the car. We figured it was easier to drive the car and look for another spot than to try and maneuver the rv.
The headlights on the car pulled up to the rv, bad news. No empty spots in the entire park. What are we going to do now? It’s a holiday and now too late for any place to be open to find a spot. We could probably just park on base somewhere but we’d be without power unless we ran the generator which is quite loud. So we did the unthinkable, we stayed at the site we were at and just plugged in our power cord. We didn’t intend to take someone else spot and if by chance they came back, we would profusely apologize and move but we figured since it was late and Thanksgiving that we might be okay for the night. I didn’t feel good about it and was uneasy the whole night. We made spaghetti and meatballs for our Thanksgiving feast and afterwards everyone just went to sleep. We were planning on moving out first thing in the morning.
Let me just back up and say for the record, we are not those people. We don’t lie, cheat, and steal. We are the people that are honest and give money back if we were given too much. We’re the ones who go all the back out of our way to pay for the things that we forgot to pay for at the bottom of the cart. My only justification was that the night was already paid for by the people who occupied the space. I can’t call the office until Monday to pay even if I wanted to because of the holiday 4 day. So, to make it right with the world, we are going to donate extra toys for the Little St. Nick’s toy drop off we are doing this year at the Arnold Palmer Children’s Hospital.
We woke up early and got the heck out of dodge. Once we were off base I finally felt like I could breathe but I still felt bad. I told Jimmy that now we have to add pirates to our list of many titles. Since we got such an early start, we are only a couple of hours from our Florida destination. We weren’t scheduled to check in until Monday so I called to see if they could just adjust our stay dates. Our site was already booked and someone was already in it until Sunday so we decided to stay on the only other site they had open for this weekend until ours was available. After last nights debacle, I just wanted a legitimate place to stay.
Taking our last short break and enjoying some DQ treats. Lookout me hearties, our band of buccaneers are coming your way Orlando!
November 22, 2018:
Drove until we got to Vidor, Texas. Jimmy’s old Army friends live there and graciously opened their home to our crazy kids and let us power the rv for the night. The drive was pretty clear most of the day. There was a slight lingering overcast which was perfect for driving but turned into a bit of rain once we got closer to Houston. Traffic was pretty stop and go in spots but that’s to be expected for the busiest travel day of the year.
The kids were in rare form and ran around. We’ve gone a few days where the days are just filled with miles on the road and they don’t get a chance to get out. By the time we stop for the night, it’s already pitch black out. We leave again early in the morning, just to do it all over again. Our next stop might actually be for a couple of days so we can all stretch out.
Other than the little kids acting like they were raised in a barn, it was a perfect evening. It had been almost 15 years since we last stopped by, and coincidentally it was around Thanksgiving then too. A few cocktails were had, along with plenty of laughter while catching up and reminiscing about old times. The thing about good people is that despite any differences or any amount of time that has spanned, they are still good people. We’ve been very fortunate in this life to know such people and that we are able to call them friends.
James took the little kids back into the rv for the night. They basically wore themselves out and were pretty tired. Jimmy and I got into the rv later and called it a night. The morning came quickly, as they always do on the road. All the kids were sleeping as Jimmy and I were getting things ready to drive again.
We were parked on a level grass area. The choice this morning was either to keep the car attached and do a U turn in the backyard or to take the car off and back out the rv. The men decided that it would be fine to U turn. One second, we are pulling up and turning. The next second, we are wheel deep in mud and completely stuck. 🤦🏻♀️
The situation from there deteriorated quickly. We had to unhook the car and the thought was to have a heavy duty truck pull the rv out. No dice. So then the thought was to have two trucks pull. Still no dice. As luck would have it, a neighbor with a bulldozer was still home and pulled us out. Only in Texas can you have a neighbor who happens to have a bulldozer laying around to bail out a stuck in the mud rv, God Bless Texas!
With everything turned around and hooked back up, we headed back onto the road. We will be driving through Louisiana and Mississippi today. We are hoping to find some local must have eats that might be open on Thanksgiving.
We are so beyond blessed and thankful for this adventure we are on. Wishing you all a very Happy And Blessed Thanksgiving!
“When you rise in the morning, give thanks for the light, for your life, for your strength. Give thanks for your food and for the joy of living. If you see no reason to give thanks, the fault lies in yourself.” -Tecumseh
November 20, 2018:
Spent the night in El Paso last night and got to have an amazing Mexican dinner. Nothing really exciting to report, which is good news, and we called it a night pretty early because we got to the rv park later than we normally stop.
Traveling through Texas today, then again the next day, and then again the next. We are basically cutting through the entire state. It’s massive with mountains in the distance and vastness surrounding everything else. The posted speed limit is 80 mph but we keep trucking along at a comfortable cruising speed of 60 mph. We have a gas rv and not a diesel ran one. What kind of gas mileage do we get you ask, let’s just say we could get better gas mileage by holding a gas can with a giant hole in it and running. 😂
We thought maybe we would be in New Orleans by Wednesday for beignets on my birthday but I think we’ll be doing them for Thanksgiving instead. Kind of strange to not be cooking a full turkey dinner this year but our adventure has been worth sacrificing a few traditions. You never know, we may be at the beginning of experiencing some new ones as well.
There’s something exciting about just traveling with no particular place to go or be. Going out and seeing where life takes us while soaking in all the beauty along the way. It reminds me of a poem and the lines “All that is gold does not glitter, Not all those who wander are lost.” -Tolkien Which for me, it speaks to our journey with Nicholas. Not everything that appears “bad” is actually bad. Heterotaxy and CHDs are devastating but they have also turned into an incredible blessing for our family as well. And now we get to be wanderers, bravely setting our own course and carving out our own path.
Wishing you safe travels for those of you having to venture away from home this Thanksgiving.
November 19, 2018:
Found a roadrunner in Las Cruces during a pit stop.
Back on the road, away we go...meep meep!
November 19, 2018:
California has been great and we look forward to coming back to visit. We didn’t get everything in that we hoped but it just leaves things for next time. We packed up and rolled out early Sunday morning. We had nothing keeping us in Anaheim so we decided to leave a day early and have dinner with our niece in Phoenix. The Vikings and Bears football game was on at the restaurant we met at which was fun since Chris is a bears fan and we’re Vikings fans. The place was perfect because we were tucked away in a quiet corner where the kids could unleash some pent up energy.
We ended the evening and said our goodbyes. Looking forward to seeing them a year from now for their wedding! Got back to the RV and wrangled the kids together for bedtime. We decided since we left so early the day before that we would just sleep in and not stress about getting an early start to getting back on the road.
The last few days were again on the quieter side. Before we left Anaheim we played a little mini golf at the rv park, picked some more oranges, and we went out to do a little road trip shopping. Every time we go out, someone always asks if Nick and Jo are twins. We tell them they are not and that Nick is just small because he has a heart condition. I guess it can be kind of a conversation killer and sometimes we’re left with an intangible awkwardness afterwards. Sometimes people are intrigued and ask a few more questions. We don’t tell people to make anyone feel uncomfortable, we tell people to help bring more awareness and because we’re so incredibly proud of our son who has persevered despite having heterotaxy and heart conditions. He is a living testament and reminder of our gifts of faith, hope, and love.
The other night when we were out for dinner we were sitting waiting for a table and a small group of people were complimenting our kids and engaged in a conversation with Jimmy. I then heard Jimmy tell them that we are on a kind of make a wish trip. I knew immediately what he meant. Make a wish is well known and the reference also conveys a seriousness that is sometimes lost with just telling people that Nick has heart conditions. What Nicholas has isn’t curable, it is not fixable, it is not discriminating, and it is not forgiving. Our best hope for him is that his next open heart surgery will sustain his body into adulthood.
Our journey does seem a bit bleak at times. But the true beauty of this life is akin to a rainbow in that it is not made with sunshine alone, it needs rain.
So onward we go on this road less traveled.
November 15, 2018:
Another perfect afternoon was spent leisurely walking with the little kids to pick oranges. We decided to grab some extra this time so that we could peel and freeze some. We let the kids peel which was fun for them and kept them occupied. Sometimes the best thing to keep the peace is to task the kids with mini chores. They love being our helpers and it makes them focus on something other than fighting with their siblings.
We pulled out our portable ice maker. We don’t have a lot of freezer space so we use the portable to make small batches. Having ice is not a necessity but it’s certainly nice to have. We turn it into a bit of a task for the kids. They have to wait for the cubes to be made and pushed forward into the holding basket. Then they each take turns getting the cubes into a freezer bag using utensils. The added bonus is that it also helps with motor function.
The kids colored in their coloring books and all got a custom tattoo from Daddy. Nick and AJ wanted a Steamboat Willie like the one Jimmy just got done. JoJo wanted a Minnie and Mickey.
That’s been the extent of our day. Some days aren’t super eventful, they all shouldn’t be though. Some days are reserved for recharging and enjoying the calm. There’s a lesson in these days too.
November 15, 2018:
One of the reasons for us trying out being snow birds this year was to have the ability for us to get the kids outside during the winter. In Minnesota, it’s too cold for the little ones to be out long and they get stuck inside with a major case of cabin fever. We took advantage of the weather and made it a park day yesterday. There were a few more kids there than I would have liked but the playground was big enough that it didn’t feel crowded. We had driven past this particular park a few times and the kids would always freak out about how awesome it was so we knew we would be making a pit stop there at some point.
Our kids love playgrounds, especially because they don’t get to do it all the time. In many cases, the parks are too crowded so our kids don’t get to go and it can be hard to feel like we are constantly telling them no to things. It’s nice to be the good guy and say yes...but with loads of sanitizer of course. The kids have been conditioned and they know to put their hands out immediately when we say “hands.” It’s just another example of our new “normal” and we wouldn’t want it any other way. Because in our world, perfection is defined by the imperfect.
November 14, 2018:
Last day at Disneyland and it did not disappoint. We waited a few extra days before using our last park day so that we could see the changes for Christmas Disneyland from Halloween Disneyland. Everything was beautifully decorated and lit up. It’s kind of a strange thing to listen to Christmas songs about snow while it’s 80 degree out. I’m not complaining though, it’s been so amazing.
The kids got to go on some rides, we got to enjoy some sweet treats, and we bought our Disneyland souvenirs before we left the park. Every year we get a family nutcracker for the current year. We figured this year should be commemorated with a Disney one. We saw one of Jack Skellinton Sandy Claws but the price was outside of what we wanted. We always play this game of name that price. We each get an idea of what price we think it should be and if it’s close, we usually get it since it’s reasonably justified. So, we decided to pass on the nutcracker and keep looking.
We get 10% off merchandise with our Disney Visa card which is a nice bonus. Plus, I recommend it for Disney goers because you get the added bonus of private character meet and greets for free. Jimmy was in line buying me a sweatshirt. I must have searched through every shirt in every store and couldn’t decide, but I finally found one. As he was checking out, he says the discount is on purchase totals of $50 or above. The sweatshirt I wanted was $49.99, well played Disney, well played. Needless to say, we are now the owners of a Jack Skellington Sandy Claws nutcracker for 2018! 😂
On the way home we stopped at Yoshinoya for James. When we lived in Japan we used to eat there. It’s kind of like the White Castle of Japan, open late and everywhere. Jimmy would be working late K9 shifts and on his way home would always stop and pick some up for us. They have these perfect rice bowls topped with meat. We always joked it was like crack because once you had it, you would find yourself craving it. Minnesota doesn’t have these chains and we looked it up years ago to find they only go as far East as Las Vegas. The bowls don’t taste exactly the same as in Japan but enough to enjoy and reminisce on our time overseas.
We get back, high five about surviving another eventful day, eat, and began to relax after getting the kids settled and decompressing with a glass of wine. Then all of a sudden, as 11pm struck, AJ moans out that his tummy hurts. Oh great, is it just an upset stomach from the sweets, is it the start of a stomach bug, was it constipation or diarrhea, was he just thirsty or hungry, all the things that run through our minds as parents before we run through our child assessment. We talk to him and he seemed fine. Gave him some water to sip on and a small biscuit.
Then AJ strips off his shorts and runs to the bathroom. I’m thinking okay, must be an intestinal thing. Nope. He ran to the bathroom and threw up. Not in the toilet mind you, just in the bathroom and everywhere surrounding the bathroom. The stripping of the shorts had nothing to do with it, he just took them off and ended up vomiting on those too. It was a nightmarish scene. But what do you do, we’re the adults in this situation even though I kinda felt like crying. But we do as parents always do, we suck it up and do what needs to be done. We got everything cleaned up but the shorts didn’t survive and we permanently retired them to a trash bag. AJ says, “well, at least I feel better” as we are in the middle of cleaning. The only thing we could muster at the time was a response of “well, that’s good” with our best hooray like enthusiasm. We waited a while and had AJ continue to sip on some water and eventually sent him to bed. We finally circled back to our wine, which was beyond needed now, and finished our last day at Disneyland. Thank goodness!
Today might end up being just another car ride kind of day. 😂 Happy Wednesday. Sometimes all we can do is hold on and enjoy the ride!
November 13, 2018:
We’ve been hanging out and enjoying the low key weekend where the highlights of our days are going out for a car ride. It’s kind of our thing. We like to just cruise around with no particular place to be or go. Why do we do it? Well sometimes we stop for a snack or treat while we drive, sometimes we can even get the kids to take a nap, but maybe it’s just because we can get a few minutes where the children are separated and contained in their seats! 😂
We had thoughts of taking the kids to a hockey game but then reality set in and the logistics of it all overwhelmed us and we decided against it. Maybe when the kids are older, out of diapers, and can all walk on their own for distances longer than 100 feet. We watched it on tv instead, we’ll more like just the first 10 minutes. AJ and Jimmy got bored and I was out voted.
So instead of hockey games, we ventured out to eat one night and did a Target restocking run. Those things don’t seem like big deals but with our crew, they are not small tasks. We don’t go out to eat very often. It takes such a tremendous amount of work on our part that it doesn’t seem worth spending the money because we can’t enjoy it. Most of the time we are trying to appease the toddlers. Coloring crayons can only keep kids entertained for so long before they all decide that a restaurant is a good place to express their independence and test the limits of their free will. By the time our food gets to the table, we either have to box most of it up for later or we have to eat so fast we hardly taste it. On the bright side, when we get back home after going out it always feels like a small victory. We always say something to each other to the effect of “we did it team, woohoo!” and high five.
We woke up this morning to our shade tent blown across into our empty neighbor’s spot. Bummed a little because where it dragged on the concrete are some tears but there are worse things that could have happened this morning. Every day when I wake up and turn on the news, I see that the death toll is higher than the day before from the fires. The wind is so crazy strong, hoping it subsides soon since I’m sure it’s not helping matters any.
In need of some cheer so today we are heading over to Disneyland, Mickey makes everything better. It will be our last visit there on this trip. We will be leaving California next Monday morning but we still have a few things we want to do. There is supposed to be a smaller zoo that the kids would probably like. We scoped out a giant playground that sits almost abandoned that we wanted to stop by. We also wanted to take some pictures by the baseball stadium of the giant hat and we pledged that we were going to have to try Wienerschnitzel for some food before we left California. We thought about doing a beach day but I don’t think we want to go there this trip. Add the prep work for Disneyland but add wet and sand to the mix.
Provided everything with Nick is good, the family consensus is that we have to come back next year. Plus next year, we’ll have the added bonus of going to our niece’s wedding. And who knows, next year we might also be following James around the country in our RV because he is planning on joining the Army. Not exactly sure what the future will bring. For now, we are just trying to make the best of our last days in California.
Sending you all our love plus a little pixie dust! “Remember, you're the one who can fill the world with sunshine."-Snow White
November 9, 2018:
We got to experience some Santa Ana winds last night. We had to tie down our gazebo tent we use for shade and had to pull in our RV awning. The winds started picking up late last night and seems to be sticking around through today. This probably wouldn’t be too bad but there are also crazy wild fires consuming houses in a nearby county. The high winds and low dew point are not helping and feeding this sporadic monster. The fires were on top of the news of yet another mass shooting. So it seems, paradise also has their fair share of issues too. Prayers for all those affected by the shooting and the fires.
Air quality seems to be fine where we are but because it’s also still pretty windy, we’ll probably hunker down and just have an indoor day. I foresee some arts and crafts, games, and movies in our future. More exciting things like Disneyland, visiting a few more places, and a new tattoo for mommy 😳are on the docket for our last full week in California.
No matter what’s happening in the world, the humans in this rv always make life sweeter. Life is often bittersweet, wishing you more sweet.
November 6, 2018:
We went to Knott’s Berry Farm yesterday. It was our first time so we didn’t know exactly what to expect. Our excitement grew as we passed some really big coasters on our way to the entrance. We got in and immediately found the smaller Camp Snoopy area for the littles. AJ jumped up and got to go on the first ride which was a vertical up and down one. Nick wasn’t able to go because he didn’t meet the height requirement.
We kept going and found a ride that we could take the kids regardless of height as long as they were accompanied. The ride looked like a bus and it went around in a circle. Nothing overly scary but it did have a little stomach dropping quality to it which made it fun for the kids. Next we found a mini semi truck ride which was the exact same as the ones we’ve been on at the Mall of America.
We kept making our way through but had a hard time finding more rides that Nick or Jo could do. Majority of the rides, even in the small kids section, had a height minimum of over 42”. Luckily they also had carnival game areas to catch the kids attention. We played enough games to ensure a winning prize for each of the 3 little ones. It would have been much cheaper to take a trip to Target and have them pick something. 😂
Although the park didn’t have a lot for the small kids, James and I capitalized on the big kid rides. They had some amazingly thrilling coasters and we went on them all. We could get on any coaster immediately since there were zero lines or wait times. Poor Jimmy had to manage 3 kids and 2 strollers while James and I would ride. As you can imagine, none of the kids want to stay seated while they stop to wait for us. So Jimmy would have to play defense and corral the 3 of them or he would have to use the double stroller for Nick and Jo and hang the smaller stroller on the bigger one while holding AJ’s hand as he walked alongside. Not much fun for Jimmy but he gets to have his idea of fun today when he gets another tattoo done this afternoon.
So overall, not as big of a hit with the little kids as it was for James and I. Everyone still had a great time but Disney just has more things for our little ones to actively do. James doesn’t have as many rides to go on at Disney so it was nice that we focused more on his rides for the day. James did mention that although the roller coasters were great, no one compares to Disney for the between ride attractions. There is just a special grandeur and feel to Disney parks.
We left room in our schedule to go to Knott’s Berry Farm multiple times if we found it to be worth it. They are currently doing a special military pricing for tickets. Jimmy, Nick, Jo and I all got in for free and we only had to pay discounted tickets for James and AJ. But since most of our kids are still too young to enjoy the park fully, we decided that one trip was enough. Instead, we are going to visit Disneyland one more time before we leave California. We will wait until next week to go because Disney will have transitioned from their Halloween theme to Christmas which will be fun to see.
Koreatown is still on our radar for this week along with possibly catching a Anaheim Ducks hockey game before we leave California. So far, the temperature, diversity of people and food options, the variety of activities to do and places to explore, and the memories made here have all been perfect.
Nick ended our night by telling us “thanks for everything!” OMgoodness this kid of ours...he’s just so thoughtful and so stinkin’ sweet! He’s the type of kid you trek across the country, go to Disney a bazillion times, and find new experiences for. So onward, for this life is our adventure!
November 4, 2018:
It’s a solemn day as I look upon the many faces of the angels who have passed. The real fear that our son could join them and become a memory can be overwhelmingly paralyzing. But then I look up and I’m met with the sweetest smile and pair of dimples. So we pick ourselves up and do the thing that best honors them, we live.
Jimmy got up early to take Grandma Erin to the airport yesterday morning. Three weeks flew by and we are thankful for the time together. We will get to see her again in February when she comes to Florida for a visit.
It was warm out so we took a long car ride during the hottest part of the day. When we got back it was cool enough to let the kids play some mini golf at our rv park. It was fun because we got to design our own holes and the kids loved it. After we finished playing golf, we walked around and let the kids pick some more oranges and tangerines.
Got back to the rv to watch some football, Roll Tide! Another fun week is ahead of us as we are thinking about venturing into Koreatown sometime this week and doing Knott’s Berry Farm tomorrow.
Don’t just exist, go out and Live ❤️
October 31, 2018:
We went trick or treating at Disneyland last night and everyone had a great time. We went with a Star Wars family costume theme; Jedi, Sith, Chewbacca, Darth Vader, Yoda, and Rey.
Nick was loving all of the special Halloween decorations. All of the giant pumpkin Mickey heads, lights in the trees, fog machines, and the candy cart lines. Our “Snickers” of course ate a Snickers candy bar first. Well, more like just let the chocolate melt in his mouth but we’ll take it!
AJ finally got his picture with the Storm Trooper last night after many failed attempts at both Disney World and Disneyland. His main goal of the night was to get as much candy as possible.
Josephine was taking in all general splendors that is Disney and liked being strollered around while she was eating all of her treats.
James was an absolute trooper for dressing as Chewbacca in a heavy outfit in warm weather. Not to also forget to mention, him being almost 18 and still willingly taking part in silly family outings.
Jimmy and I were both exhausted by the time we got back. Night time Disney is a lot harder to maneuver. Everything looks different and is a bit disorientating. We even put lights around our stroller which helps us to see the kids better and identify which stroller is ours. When we got back for the night, we put the kids down for bed and enjoyed an adult beverage. We looked over some pictures from the night and both agreed that it was well worth the extra work and so thankful for the memories.
Not sure where we’ll be next Halloween. We don’t know for sure if we’ll be pre or post surgery for Nicholas by then. That’s why this trip this winter is so important for us. That is the reason we are packing in what feels like a lifetime of things in a few months. We are doing and seeing everything now. Experiencing new things, make lasting memories, and most importantly we are spending this time together.
October 29, 2018:
Nick loves Captain America. We waited in what we thought was a short line a few days ago for a picture with him. There were about 6-8 people in front of us when the attendant came by to tell us that “Cap” was about to go on a break for about 15 minutes. In a normal situation not a big deal but that was on top of the 15 minutes we were already in line plus the 15 minutes we had ahead of us...so sadly we had to bow out of line. We told Nick we would try another day and left it at that.
Fast forward to this afternoon at Disney California Adventure Park. We had just finished the Monsters Inc ride and tried another character picture but missed it again by a few mins. As we took a break, just down an alley way right where we were, guess who would come walking by, Captain America! Jimmy asked if he would take a quick picture with Nick and he very graciously obliged. He even asked Nick if he wanted to walk with him?! Watching that moment melted our hearts. This video doesn’t show it, but we walked a really long way. We had to actually let Cap know that Nick has a heart condition because they were walking pretty fast at first but he slowed his walking pace for him after we told him. Nick’s entire day was made in those few minutes!
Disney is so full of wonder, magic, and fun. It really has been the happiest place on earth for us. Another wonderful Disney day full of memories that we’ll cherish forever.
October 29, 2018:
The past few days have been spent catching up with family. Jimmy’s brother, sister-in-law, niece, and her fiancé came into the area so we could hang out and do Disney together. They also took James on Saturday to Universal Studios for a Halloween event. We all went to Disneyland yesterday and plan on going to California Adventure today.
Every time we are at Disney, people always stare and comment on our stroller setup. We put clip on battery operated fans on the front trays. We also give them spray bottles to spray themselves or to drink. It’s a fun way for the kids to keep cool and hydrated.
We’ve also kind of got packing for outings down to a science now. We have to tote a lot of things and so we have to strategically pack everything. We have to bring Nick’s food with ice packs, Nick’s meds, throw up rags, Nick’s extra gtube balloon, extra clothes, diapers and wipes, snacks for the kids, extra drinks, spray bottles, battery operated fans, extra batteries, sun screen, spray hand sanitizer, sanitizing wipes, camera, Disney pin bags, and basically anything else we could possibly think to need. It’s kind of lot to get everything together but it makes for a much better day that way.
Before we got to Disneyland I asked Nick which rides he wanted to ride and he said “Small world ride, Buzz Lightyear, and Pirates of the Caribbean.” The first day we were at Disneyland we walked over to the Small World ride and it was closed. I was bummed for Nick but he didn’t seem to mind. We took some pictures outside of the ride instead. On our first time to Disneyland, we didn’t do a lot of rides and we mostly just walked around to get our bearings. When most kids would complain they only went on 2 rides and they were bored, Nick says that he had so much fun going on 2 rides. He really is just a big sweetheart and makes the small inconveniences of lugging around everything totally worth it.
Our plan is park day today, free day tomorrow, and then we are going back to Disney for the Halloween special trick or treating event on Wednesday. We are all dressing up and doing a family theme of Star Wars. I’m pretty excited to see us all together in costume.
October 24, 2018:
Went out exploring a little today. We stopped at the Anaheim Packing District for a quick bite and found a perfectly tucked away private nook outside to eat our food.
Made a pit stop at Target and picked up some Indian food for James on our way back to the rv. Going to hang out for the rest of the afternoon and evening because we are going to Disneyland tomorrow!
We read reviews on the food situation at Disneyland since we’re kind of foodies. The consensus is that we have to try the beignets, cinnamon rolls, corn dogs, and churros. Who are we to argue with the critics! 😉
We know all too well that life isn’t all vacations and rainbows. Nicholas has gone through more in his short 3 years on this earth than most kids will ever have to endure. We have many hard days and we know there will be many more to come. But not today. Today we get to witness the simple joy of being 3 years old and forget for just a moment everything else...
Sending your way all of our love and happiness. Happy Tuesday!
October 22, 2018:
We made it to our destination in the Sunshine state. This will be home for a whole month! We strolled through the rv property to get the lay of the land and the kids immediately found the playground. We also walked around and picked some citrus fruits from the trees. There are lemon, lime, orange, and grapefruit trees all throughout which we are totally allowed to pick! So much fun for the kids..just have to teach them a little restraint since they want to pick everything.
Can’t wait to see all the fun things we can get into here! Watch out Cali, we’re coming for ya 😊
As I stay awake to finish feeding Nick, I take a moment to reflect on the many lessons our 3 year old warrior has taught me. Some of which are: to laugh entirely, to persevere through pain, to live without fear, to wonder without limits, and to love without expectations.
Have an incredible week. When life gets you down, try to be like Nick. ❤️
October 21, 2018:
We cannot possibly thank David & Cassie enough for all their love and hospitality. They made our stay in Arizona the absolute best!
We met up with them at Tucson Speedway and the kids got to each take a few laps in the race car with David. What an amazing experience for them! We also got the VIP treatment as Mike took us on a guided tour and we even got to go up into the tower to watch David run a few laps. It is a really cool little short track and hope to make it back one day to watch a race.
We had to get back on the road so we said our goodbyes but more like, see you next time.
Goodbye Levitt Family. Goodbye Arizona. THANK YOU 😘
We kind of storm in like a tornado everywhere we go. I did try to warn them before inviting us over! The kids were in heaven playing with Emma and all of her toys. Emma & AJ put on a show for us, they have mad dance skills. AJ definitely gets his from his dad! 😂 They also ate popcorn and watched a movie from the comfort of a chair fort.
We headed back to the rv so we could start getting packed up. Got the kids ready for bed and comfortable for a little quiet time. Every night, we give them at least 30 minutes to 1 hour of quiet time before bed and they can earn their quiet stars. We unpacked the food that was sent home for James, it was enough for an entire family meal. I didn’t realize everything that was packed to send home with us, it was just supposed to be a couple of tacos for James. Then at the bottom of the bag, we discovered an entire pie too.
The kids woke up early this morning so we just finished packing up, unhooked everything, brought slides in, got the car connected to the rv, and rolled away. We decided to leave a little early to meet the Levitts in Tucson. It’s race car day and the kids couldn’t be any more excited!
“Fill your life with adventures, not things.
Have stories to tell, not stuff to show”
October 20, 2018:
Went to see some horses today. We thought about letting the kids ride but decided against it because Nick seemed just a bit too small and unstable to go. We went to check out the goats but they were gone so we just let the kids roam the grounds of the ranch. I think they were a little bored so we decided to find a nearby playground. Can’t lose with a playground from a child’s perspective.
Funny how we were at a fancy playground and yet Nick decides that he wanted to find and pile pinecones instead. I love that he loves the little things in life.
Then Cassie showed the kids how to gently catch grasshoppers. AJ screamed and ran away (he’s my kid 😂) but Nick was immediately intrigued and wanted to play with them. He had one in his hand and didn’t want to let it go but we convinced him to release it so it could go to home. Nicholas released it and said “aww, I’m going to miss her.” He is just so sweet. He may only have 1/2 of a functioning heart but his soul’s heart is extremely big.
Cassie & Emma are coming over again today so we can all go see some horses and goats. The kids are really excited to see Emma again and the animals. Also during dinner, David mentioned taking the boys for a ride in his race car this Sunday! We are absolutely humbled by the kindness of our gracious friends and so thankful for the incredible memories we are making. ❤️
We broke for the afternoon and attempted to get in a quick afternoon nap for the kids but only Jimmy successfully took one. 😂 Later in the evening our friends came back to our RV and the kids got a chance to just run around and be kids. There was some play dough, night time flashlight tag, glow in the dark sticks, and most importantly fun.
Nick has a hard time keeping up while playing. He gets winded and is considerably slower. It doesn’t stop him from trying though and the best thing for him is to be able to self regulate so that he knows his own boundaries. At the same time, he’s just like any toddler and will run himself silly so sometimes we have to intervene. One hand, let Nick run around and regulate himself without stepping in will result in him over doing it and throwing up. The other hand, making him stop in hopes of him keeping his feed down but with him resisting and isolating him away from the other kids. Like with all things, it’s a balancing game. The benefit of him being young is that we can do things like doing a piggy back ride during tag so he is involved but not working so hard. We will have to become more creative as he gets older.
We said goodnight to our friends and ended the night with Nick saying “I had so much fun with them!” Melted my heart. A huge Thank You to David, Susan, and Emma for hanging out with us and making it a very special day!
Gun fight show, horse carriage ride, playground, ice cream, sunshine, family, and friends. To top that off, we are on our way to finally get some Mexican food!
We parked and set up the RV and let the kids outside. Every time we stop, we hook up the electric, gray tank/black tank, water, cable, kick the slide outs, and disconnect the car. Sometimes we don’t do everything depending on the length of stay but since we are here for a few days, we did it all. While we were setting up, the kids got out to explore and found some aloe and cactus plants. We got to break out the chalk and Grandma and James took the kids to the playground which was only a few feet away. It was so nice to finally be able to be outside and see some sunshine.
Jimmy drove the car to get dinner, it was nice to not have to cook. We got some laundry done. Later some of us walked over to the restroom/shower facility. Almost all RV places have restrooms, showers, and laundry. We can technically shower in our rv and sometime we do but other times it’s just nice to have continuously running hot water and not have to worry about filling up the gray tank. The kids take baths in our shower using a large storage tote. It’s nice because it doubles as actual storage space when we travel.
I think we were all relieved and relaxed knowing that we didn’t have to repack to leave the next day. Instead, today we are planning on a fun outing with friends!
We pulled into a spot south of Albuquerque for the night. It was cold and and started raining. Grandma still took AJ out to burn off some steam. If you know AJ you know why, he’s a ball of energy. They came back with ice cream treats from the front office for dessert. Jimmy says that Jo and Nick were fine not going out since they are like small dogs, they don’t need as much exercise and James is old enough to know that he doesn’t want to go out because it’s cold.
I was hoping to be close to a Mexican restaurant but no dice where we stayed so we made our own version for dinner. We played some cards with James, but I’m growing suspicious that he rigs the games since he wins almost every round. We watched a little tv and called it an early night so we could start early the next morning.
Woke up and successfully ran a pot of coffee but it was still too weak. Tomorrow I’m either going to make a perfect pot or I’m taking the car and getting one. 🤣 We hit the road early so we could get to our next stop in Arizona. Hoping to finally find some warmer weather in the Grand Canyon State and for AJ to see a cactus. It’s become his quest to see and take a picture next to one. Our next stop will be for a few days which will be nice to stay put for more than one night. We can do things like go get groceries and do some laundry. We are also excited for this next stop because we are planning on seeing friends there as well.
The morning couple of hours of the drive is the best because the kids are still a little sleepy and they sit back with their iPads or take small morning naps. It gives me time to catch up on these updates and a little me time for solitary reflective thought. I think that’s why I love road trips, they give me a chance to quiet my mind and refuel my spirit. Hard not to look out onto this vast country of ours and not feel something. We are so blessed to be able to travel freely and experience this great country of ours. We are not a nation without faults and everyday I feel as if we are growing more divisive but our foundation of freedom’s rights makes our young nation worthy of great pride.
Everyday is filled with gratitude but it’s easy to get caught up with the hustle of life that we don’t take the time to really appreciate it all. What are you most grateful for?
Where in the world would you like to explore and visit?
We found the RV park and our spot and got settled in. It was cold but not raining so we bundled up and went outside but we didn’t make it long. We went over to check out the “playground” but in actuality it was a plastic piece of a play set that was blown over so we just played a few rounds of tag and we visited with some large horse statues at the front of the RV park. Luckily the kids weren’t overly disappointed with the play area since it was too cold to be out long anyway.
Got back in the RV and pulled the toys out again and made dinner. Every time we make a stop for the night, we let the kids put a star on our map to commemorate our cross country journey. The stars make it fun for them while they get a little geography lesson too. We marked another night done, got settled and had the Voice on tv in the background. I set up my nemesis coffee pot for my final attempt at getting some immediate coffee in the morning.
Woke up, gave the coffee pot a good stare down. It started fine and then popped the circuit again, we forgot to unplug the heater first. Did a do-over and it brewed beautifully. Yes, sweet victory. Until I drank the coffee and it was really weak... the coffee saga continues!
Packed up and rolled out. Hoping that New Mexico brings friendlier weather and yields good results on finding some authentic Mexican food. I found out that we just missed the hot air balloon festival in Albuquerque which would have been fun for the kids to see. We’ll have to note it for another time.
Does your city or neighboring town have any fun fairs or festivals? Never know when we might pull through one day!
We got past Kansas but the bad weather followed us into Oklahoma. We were hoping for warmer weather so the kids could run around to burn off some energy after being stuck inside all day but Mother Nature didn’t agree. We picked a place to stop for the night but it ended up being just a parking lot with no electric hookups. So we got back on the freeway and headed south to the next city to another rv spot we picked. We were following the map to it but it didn’t look promising either. We turned onto a non paved, narrow, and unlit road in the middle of nowhere Oklahoma. Yep, sounds just like the start of horror movie. Okay, so maybe the chances of us getting murdered and left in the wheat fields was relatively low but we were on a road that didn’t allow us to turnaround. One of the downsides of towing a vehicle is that we can’t back up. Technically we could if we unhitched the car but it’d be a little bit of a pain.
We continue on the shady road, since we have no choice, and out of nowhere there is a clearing and a view of a lake and a solitary parked trailer on our right. We pull in and get hooked up. The first thing I did was plug in an electric heater and I pressed the button and nothing. Great, first the coffee maker and now the heater, seriously? We figured out that we just popped a circuit, nice quick fix. This meant we would have coffee in the morning! 🙌🏼 We have a propane tank for heat which we also use but I figured I’d also use an electric one since we don’t pay for electric and that’s way cheaper than the cost of refilling propane. We pulled the toys out for the kids, made dinner, turned on some Monday night football, got everyone settled for bed and called it a night.
Morning came fast, as it always does but at least it brought along with it the sunshine. Turned on the coffee maker and it started overflowing so we turned it off. Curse you coffee pot! The struggle for my morning cup of coffee continues. Got everything packed up again and off we went. Drove through Oklahoma City which is familiar territory for us and showed AJ the direction of the hospital he was born at and told him he’s our designated Okie Sooner. We lived in Oklahoma for a couple of years and even bought my dream house there. We planned on staying there forever but the Army had other plans.
Today brings more road time. Looking to probably stop in Texas somewhere. Our initial overview of this trip put us in Albuquerque but that is entirely too far so we are making adjustments as we go. Fingers crossed that the weather cooperates and the kids can get out once we stop. Hoping to shake the cold weather we’re bringing with us from Minnesota, “Winter is Coming.”
Let us know where you’re from! Is it cold where you are?
October 14, 2018:
Yesterday was the day. We jumped into the RV and we started on another adventure!
If you would have asked me 4 years ago if I could imagine owning and traveling across the county in an RV, I would have probably laughed and suggested you be committed. Truthfully, I’m not the outdoorsy type. I love being outdoors but I hate bugs. I love looking at picturesque scenery but could do without the hike to get there. I love star gazing and feeling the warmth of a campfire but I still hate all the bugs. You get the idea, I’m more of a city slicker by all practical measurements.
4 years ago, I also had no idea I would be embarking on a journey alongside heterotaxy and congenital heart defects either. But as they say, here we are! Because of the concerns with Nick’s immune system we don’t want to fly on a commercial airline with him. We haven’t ever been advised not to, it’s our own personal opinion and decision on the matter. The idea of breathing in the recirculated air of every sick person on the plane makes me cringe. So ruling out air travel made family vacations a bit more challenging.
We could have just gone the conventional route of car travel and packed everyone in the minivan. But then we would have had to deal with random hotels for stops which is a logistical nightmare. We not only have to strategically get everyone out of the car and into the hotel with all of our needed belongings, we have to plan ahead to decontaminate the entire space as well. Additionally, 3 car seat strapped children between the ages of 1 - 5 plus a 17 year old doesn’t make for an atmosphere conducive to fun, especially when we will inevitably have multiple pit stops to accommodate the tiny bladder of a 5 year old and have many diaper changes along the way. I need a vacation just thinking about tackling that!
So we bought an RV. Now we don’t have to breathe airplane recirculated air, we don’t stop constantly for tiny bladders or diaper changes, and we don’t need to clean hotel rooms so we can stay the night. Our kids can nap comfortably, I can make meals, the kids can make puzzles or draw and play games all while we are on the road to our intended destinations. We’ve already made a ton of memories and can’t wait to make many more.
We started the day with AJ‘s last soccer game of the season. We packed up last minute items and hit the road after noon. The weather was gloomy looking and gray but clear. Usually we have every stopping point planned out but on this trip we decided to not push ourselves and find rv parks when it was the right time to stop.
Day 1 brought us to Osceola, Iowa. We have a handy phone app that finds rv parks for us and we picked one and parked for the night. We let the kids get out and stretch their legs but we didn’t stay out very long because it was chilly. We set up for the night, made dinner, let the kids watch a movie, and got everyone to bed. Then something really special happened for Jimmy and I. Minds out of the gutter...we already have enough kids. We quietly exited the rv and walked over to the adjacent casino, just the two of us. It felt like we were the kids and sneaking out of the house. It’s the first time we’ve been together and away from the kids in over 5 years!
AJ was born and we didn’t use a babysitter with him. Then Nick came and we wouldn’t use a babysitter with him. Then Jo came and there was no chance of getting a babysitter. But last night we had a perfect scenario; all the little kids were sleeping, we were not going to be far, and James and Grandma Erin were there in case anything happened. We stayed for a few hours, had some fun, won some money, and snuck back into the RV to get some sleep.
This morning we woke up naturally, no alarm clocks, and picked up to roll out again. The coffee maker broke but we managed to MacGyver a few cups before we got back on the road again.
Look out world ‘cause we’re coming. We are the adventurers of our lives
October 2, 2018 posted 3:14pm:
“RAGE, rage against the dying of the light” -Thomas
Our tough guy got the “all clear” for our winter trips and doesn’t need to be seen again until next Spring! Nick’s oxygen salutations are still in the mid to upper 80’s, his weight was almost 26 pounds, and all the labs looked to be within normal range. We are to just maintain status quo with him by keeping him healthy and growing. We will save talks of heart catheterizations and surgery timelines for another day.
So we keep on keeping on as we try our hardest to experience new things and create as many memories with Nicholas as we can.
Thanks again to Aimee Anne Photography for giving us this sneak peak picture of “muscles” from our family photo shoot.
October 2, 2018 posted 9:51am:
Nicholas is trying to decide if the rubber ducky prize was worth the blood draw...jury is still out.
We are at the Mayo again today for routine x-rays, labs, echo, and meeting with our cardiologist. Fingers crossed for good news as we are also getting ready for our long snow bird vacation this winter.
September 29, 2018 posted 4:42pm:
Happy World Heart Day!
Special thanks and credit to Aimee Anne Photography!
September 23, 2018 posted 2:21pm:
Look out ladies!
Getting ready to have some family pictures taken this afternoon.
September 20, 2018 posted 7:26pm:
We had an appointment at the Mayo this morning with our Gastroenterologist. The doctor said everything was good 👍🏼 We are only making a slight adjustment to his medications.
Nicholas weighed in at just over 25lbs. He is at the very bottom of the growth chart (1%), but he’s trending on an upwards trajectory which is always great to see. Nick is proportioned really well and the doctor even said based on his overall weight and height together that “he’s actually a little chubby”! 😂 He’s not by any stretch of the imagination chubby, but the doctor meant that according to his height and weight potential, he is perfectly healthy!
A reward for our awesome appointment was a stop off at the Mall of America. It’s been stormy rainy all day and since we couldn’t be outside, we decided to walk around and let the kids explore Nickelodeon Universe.
We are finally at home and busy packaging up Nick’s Bear Hugs bears for the post office. This batch are lovingly being sent out to several parts of Canada, Utah, Arizona, Mississippi, Missouri, Pennsylvania, Massachusetts, Arkansas, Oregon, New York, Georgia, Alabama, and Minnesota.
To date we have done 128 bears. We have almost sent a bear to all 50 states. We are also international and have sent out several to Canada, England, Scotland, Ireland, and Singapore. We couldn’t have done any of this without your continued support, Thank You!
September 15, 2018 posted 9:23am:
AJ is playing soccer so naturally Nick says he wants to play too. And although most little brothers look up to their older siblings, not all little brothers have heterotaxy and congenital heart defects.
We always try to make Nick feel as “normal” as possible. He’s still young and hasn’t realized or fully experienced being different yet. I wish we could always keep him in our protective bubble. The cruelties of the world we live in will inevitably chip away at it though and leave him and us vulnerable to the scrutinizing reality of this life.
For now, we take shelter in the knowledge that Nicholas’ innocence is still temporarily intact. We don’t yet have to explain to him all of his limitations, special considerations, exceptions, and differences. And although there is comfort in the notion of explaining to him that differences make him beautifully unique, at the end of the day, different stripped away is just different. And those differences can be difficult to navigate. He will have the disadvantage of not knowing hindsight and won’t necessarily be able to see through it but rather he’ll have to experience through it. I hate that he’ll have to do it alone. We will always be there for him but there are parts of his journey that we will just not be able to go. He alone will have to live his truth as we all did or do still.
For now, we don’t have to explain any of that yet. We don’t have to tell him that he may never be able to play soccer. For now, we put on an extra jersey and make him an honorary “Garter Snake” soccer player so he can be just like his big brother. For now, he’s here with us and for now is where we will stay.
To all our friends affected by Florence, stay safe!
Hoping your weekend is chalk full of fun!
August 15, 2018:
Admittedly, my posts have been fewer and fewer. I think the idea of an impending surgery next summer is making me unintentionally more selfish. It’s almost like I’m trying to hold on tighter and keep Nicholas to ourselves. Like somehow it will keep him with us forever and safer.
Obviously, it is not the case and I have to remind myself that part of our mission of bringing awareness to heterotaxy and congenital heart defects was sharing our journey.
The last few months have been great. Since it’s summer time, we are able to be a little more relaxed about germs because we are outside of cold and flu season. We are always very acutely aware but it’s during these months we get a bit more breathing room.
Nicholas’ weight has been and probably always will be something we monitor closely. We recently switched his food to a different formula that will help to increase his weight. So far so good with the transition. His current weight has been hovering around 24.5 lbs. We would like to see his weight closer to 30 lbs by his next surgery.
We still struggle with vomiting. It’s not at the same frequency or volume as before which means the medications are working...kind of. He is currently on 3 medications for his stomach and we are still working out the right balance.
Nicholas is still almost exclusively tube fed. He has in recent weeks started swallowing tiny (seriously tiny) amounts of food, which in our world is a very huge victory. So far he has swallowed cheese, eggs, breakfast sausage, and chocolate. We keep encouraging him and work towards oral feeding. The benefit of his tube is giving him medications (12 syringes every day) and pushing extra fluids for hydration.
Overall, Nicholas is doing great. His heart function has remained about the same, which is good. He will get tired and winded with activity and will ask us to be picked up. He is a typical 3 year old in many ways. At the moment, Nicholas loves Marshall from Paw Patrol, pirates, and sings the Small World song from Disney on a daily basis.
The next couple of months will be busy for us. We just got done with a big birthday party for both little boys. We have a baptism for Nicholas’ sister Josephine in a couple of weeks. After that, we are coordinating a charity event. And then finally in mid October, we will be heading out in the RV as we trek across country to California.
For now, we keep on keeping on!
August 12, 2018:
Mario Brothers theme birthday party today! Goomba smash, Yoshi egg hunt, water balloons, and most importantly, friends, family, and fun!
So very thankful to have been able to make these memories.
June 1, 2018:
This is our Friday night, pie anyone?
Wishing you a fun filled weekend!
May 23, 2018:
Spring cleaning through old clothes always means it's time for a fashion show!
Have a great Wednesday, go Fore it! ⛳️
May 15, 2018:
Incredibly long day of appointments! We got on the road at 6am for a 1.5 hour drive to make it to our first appointment at 8:15pm. X-ray went well, echocardiogram did not. Nicholas has developed a crazy fear of it and cries the entire time which meant that we didn't get any new images.
Appointment with the dietician went well. We came up with a new game plan to get some extra calories in Nick. We will be switching suppliers which can be a bit of a mess until everything get straightened out but will be completely worth the hassle if the new food works.
Our cardiology appointment was easy peasy. Nicholas was so great today and let Dr. O'Leary exam him and listen to his heart. No significant changes means no significant measures need to be implemented. We will have a routine follow up appointment in 6 months.
Nicholas' oxygen saturations have been in the mid to upper 80's post Glenn procedure which hasn't decreased much. Given his current status and what we can expect in the coming months, there's a tentative plan to possibly do his next open heart surgery, the Fontan, by next summer. If the timeline works the way we anticipate, we will set up a heart cath and possibly an MRI during our next visit for the following 6 month Spring appointment.
One year away gives us some time to do a little more traveling and finding a few more adventures. The thought of it actually happening so soon is already giving me anxiety though because 1 year will be here in a blink. Having to remind myself to breathe and not get too far ahead so we can enjoy every minute along the way.
Grateful for today and so very blessed to have another day.
May 13, 2018:
So blessed that this crew of wildlings call me Mom.
Wishing all moms a very Happy Mother's Day!
May 6, 2018:
After a day of driving from Kentucky, we made it to our destination yesterday in Indiana where the kids were excited to get out and run around. They can be a little overwhelming to put it nicely. 3 cooped up toddlers released in a house to run amuck, let's just say it's like herding cats. A huge thank you to Kay and Harvey Johnson for having us again and being the most gracious and generous hosts. Hide your breakables, the Viners are coming! (We are 2 for 2 on broken wine glasses now 😳)
A delicious Mexican themed dinner feast was eaten. Before it got dark, a short walk was in order for some good ole playground shenanigans. After a little energy was burned off, we made an attempt to watch a movie. By this time it was getting late and the kids were getting squirrelly because they were all tired so I put them all to bed.
We slept in and got everyone wrangled together in time for a breakfast buffet that was waiting for us. With our bellies full and our last day of driving ahead of us still, we had to say our goodbyes and we hit the road again. Next stop, Minnesota.
What an amazing vacation. So many new experiences and packed full of wonderful memories we will cherish for a lifetime. Now we will need to unpack and get into our home routine again. Next week we have some appointments for Nicholas at the Mayo. A follow up GI & nutrition, a routine cardiology visit, meet the surgeon, and a tour of St. Mary's hospital which is specifically where Nick's next surgery will take place.
Hoping we get some good news next week and the all clear for more traveling. This coming fall, we wanted to head west while making some stops to see friends and family in Arizona and California with our final intended stop at Disneyland. And beyond that, looking really ahead, we'll probably have another cardiology appointment after we get back from California to reassess his heart and discuss possible timelines for his next open heart surgery. We were tentatively prepped to have it between 3 or 4 years of age but ultimately Nicholas will decide when his body needs it.
Meanwhile we have to keep gaining weight with our target goal of 30 pounds at the time of surgery. It feels like an extremely daunting task considering at the last check, we were still only around 23-24 lbs. I'm anxious to get him on a scale once we get home since we didn't weigh him the entire time we've been gone. Fingers crossed that Nicholas didn't lose any weight and that all of his appointments go well next week.
We are making our last rest stop before our final hour stretch. As much as I love our adventures, we'll be sleeping in our beds at home tonight, woohoo!
May 4, 2018:
Heterotaxy Awareness Day!
I will never forget the day we got our diagnosis. It was the first time that I had ever even heard the word heterotaxy. As soon as the doctor said Nicholas had "heterotaxy" I immediately had an immense sense of fear and grief without knowing exactly what it meant.
In the next several months ahead, I grew to resent and hate the word heterotaxy. I hated the unfairness of it. I hated how painful the journey it took us on. I hated the devastating impact it left. I hated what it could mean for our future.
Fast forward to today and somehow I don't see heterotaxy the same way anymore. It's probably because the word heterotaxy to us is a 2 year old little boy who is silly, willful, curious, independent, strong, and one of the world's most loving humans. Heterotaxy has given us Nicholas. When I look at him, it's hard to hate anything about that. Instead, we've learned to see heterotaxy as a teacher of courage, understanding, empathy, commitment, grace, love, steadfastness, appreciation, gratitude, and faith.
Although the word heterotaxy doesn't define who Nicholas is, we acknowledge that it is a part of him. And so today, and everyday, we help to spread heterotaxy awareness.
Defined by CHOP:
Heterotaxy syndrome is a rare birth defect
that involves the heart and other organs. The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.”
May 2, 2018:
Busy last couple of days and today we are on the road towards Alabama.
On Saturday, the kids met their Great Uncle Mike who stopped in for a visit on his way back home to Kansas. James and Jimmy went to see the new Avengers movie at Disney Springs that we had planned reservations for before we left on our trip. We also filled our time with pool days, playgrounds, a visit to an arcade, golf cart rides, more Chip and Dale campfire sing alongside, another outdoor movie, and our last park day.
Nick has had a lot more freedom to walk around than he ever has before. He's really enjoying his independence and has been a bit difficult to reign in at times but who could blame him. We are still very cautious though. We always carry our Clorox wipes and hand sanitizing spray. We always have an ear out for anyone that sounds sick or coughs.
So for an example, as we walk through Magic Kingdom, if we hear someone coughing, Jimmy and I immediately make eye contact and quickly maneuver the strollers in an evasive manner to get as far away as we can. Truth be told, I find myself holding my breath as well until we are a safe distance away. Then when we do rides, each group take a wipe and wipes down all hand rails or levers the kids can come into contact with. After the ride we spray everyone's hand with sanitizer. This combination of precautions has worked for us so far.
One night while we were out at the campfire area for the outdoor movie, we actually had to leave. It gets pretty crowded while Chip and Dale are walking around taking pictures with everyone but we managed to finally find a spot to wheel the wagon the kids were in and sit down. When the movie begins, the crowds usually thin out so we moved again for better viewing. Keep in mind that when we move around, it's like herding cats when it comes to our kids so it's a mini ordeal just trying to change locations. We finally get settled in and the movie is starting. Then it happened, we heard someone coughing right behind us. It didn't sound like just allergies or smokers kind of cough either so instead of moving again, we decided to retire to the safety of the RV. None of the kids wanted to go back so we had to coax them with the promise of playing the same movie with the added bonus of popcorn and snacks.
Besides the one time we left, we haven't felt any limitations. Nick tires more easily in recent months but we use the strollers for the most part anyway. Nick gets red and flushed and we always do an afternoon break. We all get hot and tired though and need a break just as much as Nick does. Some rides Nick can't go on that AJ can but it has to do with height restrictions. As James and I go on roller coasters, they announce that the rides aren't recommended for those with heart conditions and it always makes me think of Nick. I get a little sad that he may never get to ride them but only for a split second because then I think about how overwhelming thankful I'll be that he's alive when he's big enough to even get on the ride.
On our last park day, we like to close out with actually being at Magic Kingdom for the fireworks show. We got a great viewing spot so we could watch the display on the front of the castle. Josephine was a little scared of the loud fireworks but really liked the songs. Nick couldn't stop screaming in excitement as every single firework was shot. Towards the end of the show, they play a song from Hercules with a line in the lyrics "a hero's strength is measured by his heart" which again makes me immediately think of Nick and get all emotional about being able to live that moment together. It's such an amazing thing when you are able to really be IN the moment. A single split second in time that holds this immense gravity, awe, and understanding all at once. It's because of Nick that we recognize more of these moments and appreciate just how precious they are. It was the perfect closure to the perfect vacation.
Unfortunately Josephine was sleeping, so she and Grandma missed out on seeing the surprise characters. We have a Disney credit card that gives us the perk of going to special character photo spots throughout the parks. It's like having our own private character experiences and has been such a highlight for the kids.
April 27, 2018:
Thursday was another resting day. We took Grandma Kathy for a golf cart tour of the campgrounds. We then took the ferry boat to Magic Kingdom to get her some park passes. Nick wanted to go on the monorail, so we ate lunch at the Contemporary hotel and rode the monorail back to the ferry boats.
We went back to the RV to let Josephine take a little nap. Dropped James and Grandma off at their cabin with the plan to meet up later with everyone. After a small break, we packed up dinner and bath items and we drove over to the cabin.
We let the kids explore the cabin, or according to AJ, otherwise known as "the barn". There is a set of bunk beds that they found right away, which instantly became their new fun land. We made dinner, ate, gave the littles a bath in an actual bath tub, showered, watched a bit a tv with a glass of wine, then called it a night and drove the golf cart back to our RV. The kids got settled for the night so they are ready for another park day at Magic Kingdom and Epcot. The Tinker Bell toys are ready for the morning along with the coffee filter filled with grounds ready to be brewed.
"I knew when I met you an adventure was going to happen" -Winnie The Pooh
April 25, 2018:
We spent the day at Disney Springs. Walked around, grabbed some lunch, traded some pins, scoped out where the movie theater was located for James and Jimmy (they have reservations to see the new Avengers movie on Saturday), and then we took the bus back for our afternoon break.
Took the golf cart out to run some recon on some of our rocks we painted. They were all missing and we are hoping to see some pictures of them and find out who found them.
Grandma Kathy flew in today. We got her settled into a cabin where James will be able to stretch out and be staying with her. Heading back to the RV to spend the last few hours with Grandma Erin because she has to leave us tomorrow morning.
"Ohana means family"
April 25, 2018:
Hollywood Studios on Tuesday. Started the day watching the Stormtroopers march through and then getting a personal back stage picture with Kylo Ren. Nick didn't know what to think of him and made sure he didn't get too close. The little kids took a long nap in their stroller and the big kids (James and I) got to go on the Rock 'n' Roller Coaster and Tower of Terror rides.
Headed back to the RV from our park outing. After we were recharged from our late afternoon break, we went on long golf cart ride and hid some of our painted rocks before we joined Chip and Dale for some sing along songs. Afterwards, we roasted some s'mores and watched the nightly outdoor movie which was playing the Rescuers.
Another non park free day is planned for today. Grandma Kathy is flying in to spend the second half of the trip with us while Grandma Erin is leaving tomorrow but got to spend with first half of the trip with us. We are so fortunate to have them with us and share in our memories.
April 23, 2018:
Started our day with lunch at Be Our Guest, followed by rides, rides, and more rides!
Can you blame us for wanting to keep coming back? Their smiles say it all!
"I wouldn't have nothing if I didn't have you"
April 22, 2018:
April 21, 2018:
Nick didn't get to do this the last time we went to Epcot because there were too many people. So glad this time around that we went during an off season and he got the chance to experience some more fun things.
Weather was perfect. The company was perfect. Kids were perfect. (Except for the total meltdown Josephine had on the way back). The day was perfect.
Today was a non park/rest day. We spent most of it just hanging out, going for walks, and cruising around in the golf cart. Forecast said rain but it's been sunny and wonderful.
Tomorrow is a planned pool day with more relaxation and proabaly more of our usual shenanigans.
"Today's special moments are tomorrow's memories" -Genie
Our site is in a perfect location. We are steps away from the comfort stations which house showers and laundry. We can shower in the RV but sometimes it's nice to shower without having to be conscience of the amount of water that is being filled in a tank that needs to be emptied.
We are also located steps away from the nightly Chip and Dale singalong, campfires for s'more roasting, and nightly outdoor movies on a large screen. A little further from there is the large pool area that has a small kid friendly area and a large slide in the main pool.
Yesterday was our first full day. We started out the day with listening to the music on the info channel. If you are a Disney goer, you know what that's all about. It's the best loop of music and has become our tradition. I wake up and turn the tv on so that the rest of the family can wake up to the sounds of instrumental Disney songs, magical.
We spent the morning letting the kids play outside. We later picked up a six seater golf cart to drive around the property, I think this just might have become my most favorite ride at Disney. We took the kids on it and the breeze from the ride is so relaxing and perfect that they were falling asleep while we cruised around. The temperatures have been a dream. Warm during the days and cool enough at night to leave the windows open.
Took a small break so Nick could sleep and cool down. Even though it's not unbearable hot, he still gets flushed cheeks and we have to take frequent breaks and give him more water through his feeding tube than usual to stay hydrated. After the short nap, we waited until it started to get dark and went over to meet Chip and Dale where Nick and AJ hugged Dale. Instead of watching the outdoor movie, we took a cart ride over to the marina to watch fireworks from Magic Kingdom.
We took a seat on the loungers on the beach and had a clear view of the fireworks display over the water. The speakers were playing the music to accompany the show and the best part was that it wasn't crowded. It felt like one of those "best kept secret" Disney type of moments.
Got back to the RV and Jimmy gave the boys a bath because they were playing in the sand on the beach. We prepped some things for an early morning. Magic Kingdom has an extra hour on Friday for resort guests. This is a fantastic perk to take advantage of because there are virtually no lines for rides.
Laid some outfits for the kids, charged up the batteries for our portable fans, set aside some diaper bag and stroller type items, and bagged up our Tinker Bell gifts for the kids. This will be our first park day and I'm super excited for the kids.
After our morning at Magic Kingdom, the plan is to head back to the RV around lunch time for our usual break. Let everyone rest, eat lunch, lounge around a bit and then we will head back out to Epcot late afternoon. Walk around, eat and drink, and take in some fireworks from Epcot-if we make it that late.
Yes, our kids are spoiled. Yes, Disney is expensive. But the way we see it, there just isn't enough times to visit Disney and share in these moment with our kids. There just aren't enough memories to make with Nick or any of our kids. Time in the sense of our lives, is finite. We wake up with grateful hearts and make the most of it!
This day will never happen again, have the best Friday April 20, 2018 you can!
We ordered some local pizza (Daddy's favorite food) for Jimmy's birthday. Started a small campfire and roasted some marshmallows for s'mores. Before the mosquitos got us, we went inside and watched a family movie and called it a night.
Packed the RV up so we can get back on the road early tomorrow morning. Our final destination will be Disney World! This life journey of ours has certainly been filled with wonderful adventures. Feeling extremely blessed to be able to spend this quality time together.
Don't put off the things you've been wanting to do and don't forget to slow down to stop and smell the "flowers
April 16, 2018:
Day 2 went much smoother. A couple of rounds of Tylenol and Motrin were administered as we were traveling to our planned stop in Fort Knox, KY. We really wanted to feel some warm weather but the cold seems to have been following us.
There was absolutely no wifi signal to be had at the RV site so we were officially roughing it! 😂 Made some dinner, popped some popcorn, gave the kids some glow in the dark sticks, and basically called it a night. The overnight temperatures were pretty cold so we all got bundled in with our blankets and got a good nights sleep. A big thank you to Auntie Tara for making the kids their Mickey blanket, it's perfect!
This morning we woke up later than normal, I think everyone needed a little extra rest. Checked the kids temperatures, fever free! Headed out on the road again to our next stop which will be in Alabama. Weather looks warmer there with some much needed sunshine. Day 3 is looking up!
Posted April 15, 2018:
Day 1 was more eventful than any of us would have wanted, but we got through it. We didn't quite make it to our intended destination due to the horrendous road conditions. We did manage to find a warm hotel room to relax and let the kids run around a bit.
We would have stayed in the RV normally but where we made our first stop was still quite cold, windy, and rainy. All was going as planned. James and Jimmy walked across the parking lot to the nearby Mexican restaurant to pick up our dinner for the night. We even grabbed a bottle of wine to relax with in the room.
Then at 2 am, all the littles started fussing. Jimmy felt heads and they were warm so he ran out to the RV for the thermometer. Confirmed. All three of them had a bit of a fever. Panic starts setting in. It's one thing for AJ & Jo to have a fever because we can let theirs kind of take their course. With Nick, the immediate fear is bacterial infection.
We gave each a dose of Tylenol and within 20 mins, the fevers were already going down. AJ hates taking medicine so he was screaming and attempting to wake everyone in the hotel... By 10 am, we were packed up and back in the RV. Low grade fevers were still hanging around and so we are keeping an eye on things as we travel to our next stop. We are just encouraging rest during this leg of the trip.
Fortunately, the next few days are just slated as traveling days and we aren't getting to Disney until Wednesday. Hoping the kids are well by then and that the worst is behind us.
Posted April 14, 2018:
When it's mid April and your home state is being hit with icy sleet-hail-rain-snow mess ...you get the heck out of Dodge!
Got everything and everyone loaded up and in the RV. We even got Grandma Erin accompanying us this trip. We began our journey this morning with road conditions which were treacherous at best. There were multiple cars and semi trucks in the ditch 😳 As we continue to travel farther from home, the better the roads are becoming.
Double thumbs up from Nick. He's excited about getting to Disney and riding his favorite "Buzz Lightyear ride!" This time around, instead of staying in a hotel, we are going to try staying in our RV at Fort Wilderness. Fingers crossed that the seven of us survive our adventures in the woods 😂
Posted April 10, 2018:
We have a ton of nicknames for Nicholas. We started with Nick which evolved into Nickerbockers, Nickers, Nick Nicks, Snicks, Snickerdoodles, and finally to Snickers.
Seems only fitting then, that our Snickers is trying to eat a Snickers 😍
T minus 10 days until we board the RV to leave!
Posted April 3, 2018:
It may be cold and snowing outside but these two melt my heart! ❤️
Sending out some Tuesday love - have a great day.
Posted March 29, 2018:
It's Thursday, Rock On!
We've been painting rocks for our upcoming trip to Disney World. Our plan is to drop off our painted rocks along our RV travels.
So excited for someone to find our rocks and maybe we'll even find some too!
Sometimes, we get overwhelmed with the sadness and anger of his heterotaxy/heart defects. And just when the gravity of it all seems too much to bear, He gives us his thumbs up. ❤️
March 17, 2018 posted 11:14am:
"Kiss me, I'm Irish"
Happy St. Patrick's Day! 🍀
March 3, 2018 posted 1:45pm:
Shout out to our new friends at The House Outdoor Gear for our new snowboard and hats for all the kids!
February 26, 2018 posted 2:43pm:
The best cure for a case of the Mondays, Disco Party! Wishing you all a great week!
February 21, 2018 posted 6:52pm:
Ninja in training.
Happy Wednesday, find your inner ninja.
February 14, 2018 posted 12:43pm:
Nicholas says Happy Valentine's Day, Boss Baby style! 😎
February 8, 2018 posted 11:51am:
February 5th - 9th is feeding tube awareness week. This is our story.
Nicholas has a gastrostomy tube (g-tube). This tube is inserted through the abdomen directly into the stomach. We insert a large syringe filled with a food mix that we make. This mix is specifically formulated and calculated to ensure we are reaching Nicholas' caloric needs for sustained health and growth.
Before Nicholas had his first open heart surgery we were encouraged to feed him as normally as we could. He did very well and was able to take a bottle as well as breast feed. Despite his ability to eat, we were warned that after the first heart surgery, feeding could become an issue. The doctor told us they are not entirely sure why it happens but that it was common. We didn't give it much thought since recovery from heart surgery took precedence.
As recovery from surgery continued, we soon found out that eating orally indeed became a challenge. Nicholas refused to take anything orally and we ended up having to put in a nasogastric tube (ng-tube) which is a tube that is inserted through the nostril down through the esophagus and into the stomach.
We continued with the ng-tube feeds for several months. We got very efficient at inserting new tubes ourselves and we also got good at taping the tube to his face. This was a normal way of life for us except we started to notice that the tube through Nicholas' nostril and esophagus seemed to bother him and effecting our progress with speech therapy. We also had to contend with his skin sensitivities to the tape, as well as the challenge of having a baby with more dexterity and strength that wanted to pull at his tube.
We were at a point where the ng-tube wasn't the right fit anymore and we needed to explore the idea of a more permanent g-tube. I really didn't like the idea and felt a bit defeated. Our hope was to go from ng-tube feeding straight to oral feedings but despite our best efforts, it just wasn't going to happen.
Nicholas' g-tube surgery went well and we were now able to feed him without the old irritations. Although it's been such a blessing, close to 2 years later I'm still not completely in love with it. I may not be in love with the g-tube but I am in love with the idea of Nicholas' ability to thrive because of it.
Nicholas has a feeding tube, not because he can't eat, but because he can't get enough nutrition by orally eating alone. We have tried everything and still continue to introduce new foods. Yes, we've even tried whatever food you are about to suggest... We've done ice cream, all things sweets, salty, savory, cold, warm, textured, smooth, runny, fatty, raw, cooked, and basically anything and everything we can think of. We keep working at it though as the goal is still to eat 100% orally and to get the g-tube removed one day.
Nicholas has a feeding tube despite the notion of waiting it out until he is "hungry enough." He would have wasted away faster that he would have gotten hungry. There are medical reasons that have effected his hunger that we are currently experimenting with medications to assist with.
I'll be honest, I've used the lack of awareness about feeding tubes. When we were at Disney World last year and we had to feed Nick, I would purposely not hide that we were tube feeding. It usually made people clear out of our immediate area which was good since I didn't want Nicholas to be over crowded by people and germs 😂 For others, I hope that maybe seeing how Nick got fed led to more awareness.
Feeding tubes are a way of life for us and we celebrate it. Hopefully the next time you see a tubie, you will celebrate with them too.
February 5, 2018 posted 7:32pm:
Does anyone have any Reese's Pieces? 👽
February 2, 2018 posted 1:16pm:
If we've learned anything in the last couple of years, it's that plans don't often go to plan in our family.
It's tough parenting little terrorists, I mean toddlers. One second, your child is clamoring to your leg to be picked up with such intensity that they've almost convinced you that life itself will cease to exist for them if you don't pick them up. In the next second, that same child has all of a sudden discovered their independence and has made it clear cross the room and decided to do a live reenactment of the titanic scene at the top of the stairs.
Some of you may already be saying to yourself "how could anyone let her kids do anything potentially dangerous like that" or "why have so many kids then?" 🤔😏 But admittedly, I've done this. I've read an article or heard a story and had an opinion about someone else's parenting. The truth is that it's easy to judge and parent shame but much harder to actually parent. My own kids use their iPads more than they should, we watch too much tv with them, we let our kids stay up too late, they have been known to stay in the same clothes for a couple of days, we spoil them with too much stuff, and we've even done dessert before dinner. 😳
We haven't abandoned all conventional methods of parenting, we still believe children definitely need structure and guidance but we've come to terms with the fact that sometimes it's okay to ditch the playbook. Especially when there are nights like the last, when it's waaaay past any reasonable parenting guideline for bedtime and herding the kids like cats into their rooms to go to sleep is a never ending and losing battle. We sometimes have to roll convention out on the floor like a blanket and set up a family room slumber party instead. It may not be the perfect parenting method, but it is perfect for us.
Life is too short for judging or fear of judgement about things that on a grand scale, really don't matter. Happy Friday, remember to encourage, embrace, appreciate, and love each other.
February 1, 2018 posted 4:08pm:
Today officially starts heart month!
❤️February marks the month in which we bring awareness to heart health and to all heart disease.
❤️ Heart disease is the leading cause of death in men and women and can be attributed to every 1 out of 4 deaths.
❤️Congenital heart defects are the most common birth defect world wide and approximately 40,000 babies are born with them each year in the United Sates.
Some dates to note:
❤️February 2: National Wear Red Day
❤️February 9: Wear purple for CHD
❤️February 7-14: CHD Awareness Week
❤️February 14: St. Valentine's Day
January 31, 2018 posted 9:17pm:
What's a Wednesday night without a little goofiness 😜
Cabin fever is starting to set in a little for the kids. We take our occasional car ride around town but it's only natural for them to get a bit restless. There are a ton of activities to do around the city, especially since the Super Bowl is in town, but we choose not to participate because of the risks.
This flu season is very concerning and extremely nerve wracking. The number of cases and the growing pediatric death toll is beyond alarming. If healthy individuals are dying from this flu, how well could we expect our immune compromised children to cope?😳
If we are going to have a chance at preventing the flu, we have to do everything possible that we can. So, we've all had flu shots, we always practice covering our mouths when sneezing or coughing, we load up on vitamin C, we don't touch our mouths, face, or nose before washing our hands when we have to be in public, we use sanitizer when we can't wash our hands, we sing "happy birthday" 2 times while we wash our hands, and we wash our hands A LOT!
Please help to do your part. The public, and especially Nicholas, thanks you!
January 11, 2018 posted 1:35pm:
As fast as Christmas and New Year's Day came, they went!
We tried to stay low key but still managed to entertain some visitors. The kids got to see family and friends from out of state who came in town for a Viking's game and a short visit.
Nicholas continues to make improvements, however small they may be, with eating. He easily and willingly tries all things food. Whether or not he swallows it or keeps it tucked in his chipmunk cheek for hours is another story. The new medication that was prescribed seems to be helping a bit with the vomiting. We will revisit his progress with GI in a few months.
It's been unbearably cold and we are so looking forward to warmer days. Until then, we are hunkering down at home. No doctor appointments, family outings, or new adventures until cold and flu season is over. Spring can't come fast enough!
Happy Thursday, stay warm and carry on!