It was so easy to take for granted… if I do everything right I will have a healthy baby. As we soon found out this is not true, Marshall was diagnosed at birth with congenital heart disease. ‘The Mars Effect,’ we found, is a complex constellation of defects and rare anomalies that seem to defy typical description. Where did this kid come from?! His constellation of heart defects include Hypoplastic Left Heart Syndrome, Total Anomalous Pulmonary Venous Return, Pulmonary Stenosis, Double Outlet Right Ventricle, and there’s more. Check out the What is the Mars Effect? tab above for descriptions. Sounds simple enough, congenital heart defect… Many people survive with CHD without any medical intervention. Others do quite well with surgical procedures to repair.
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This is the summer before Marshall heads off to kindergarten and really starts growing fast. I think he is about 1000 times more prepared for this than I am. I really don’t know what it will be like to not have a little boy at my side all day everyday. About the only I can do to make it easier on myself is work occasionally as a lunch lady at the boys’ schools. Marshall is super excited to go to school on the bus and eat in the cafeteria, and have recess on the playground and gym class and art class. WOW!!! Earlier in the year I had some major concerns about his stamina when considering him attending school full time all week. I had a meeting with some folks at the school who assured me they would do whatever was necessary to have Marshall join the other kids at school. However now that the time is quickly approaching I see he will be just fine and become one of the kindergarten pack with ease.
He just had a cardiology appointment that marks two years post Fontan. He had a wonderful report from his favorite cardiologist. According to her he is “asymptomatic” which means he’s outwardly showing no signs of heart disease. His oxygen saturation is great (96), his energy level is great and he’s growing up like he should. Another of the highlights from this visit was him being taken off his diuretic and getting the ok to travel to Colorado. As long as we take a layover half way through the flight and don’t stay for an extended period of time he is safe to travel to higher elevations. This is wonderful news to me as I haven’t been back to Colorado since we left there almost seven years ago. I hope we can make a trip out there to see the family whom I miss so very much.
We have been staying busy this summer with swimming lessons (Marshall can officially swim underwater), swimming in the backyard pool, swimming at the public pool, and swimming in the lakes. Yes, lots of swimming!!! He’s also been making his weekly trip to our favorite barn to ride horses. He even got a chance to try and keep up with his cousin Karlia who can run circles around every other kid I know. And, I have to say he held his own on the trampoline, the swingset, and at SkyZone (for the most part…).
We are just so very thankful to be here to watch him grow up and see what kinds of things he comes up with. I think so far his #1 favorite thing in the world is to annoy his big brother.
Thanks so much for checking in with us and God Bless!!!
Marshall decided for his Make-a-Wish trip he wanted to play on the beach with Grandpa and Gramma Marsha. We were so fortunate to have been included in such an amazing program. We all had a wonderful time going to the beach, shopping at Ron Jon Surf Shop, going to Grandpa’s zoo, and eating all kinds of yummy food. We even got to be entertained by Hurricane Matthew. Thankfully we survived that with the only damage to Grandpa’s house being some fencing that got blown over by the wind. However, our flight home was rescheduled giving us an extra couple days to enjoy beautiful Brevard County and some attractions in Orlando. Going to LegoLand with Aunt Carey and Uncle Ben was super fun too, except of course Marshall getting sick from the heat after leaving there and throwing up all the way back to Grandpa’s house 😦 We had planned to spend an evening at Universal City Walk but the VIP was just too sick to make a go of it. The next day Marshall got a nice air conditioned day to recuperate, going to see a movie with Grandpa and then riding the battery powered animal cars around in the mall! Here are a few snap shots of some of the great times we had on the trip!
Here is Marshall and Wyatt having a blast on beautiful Cocoa Beach. They are born beach bums, they would have been perfectly happy to spend the whole trip here!
Wyatt helping us prepare for Hurricane Matthew.
Marshall with the General Manager and Manager of Ron Jon Surf Shop. They were THE BEST! They had an awesome gift bag for Marshall with matching Hawaiian shirts for Grandpa and him ❤
Our VIP trip to Brevard Zoo. Marshall was more interested in playing with the hay despite there being an actual rhino to pet and brush. 😂
Our third trip to Cocoa Beach. And, a snapshot of Aunt Carey and Wyatt venturing along the shoreside.
We received Marshall’s travel package Monday night for his Make-a-Wish trip to play on the beach with Gramma and Grandpa. We are set to fly out of Pittsburgh Monday afternoon and arrive in Orlando just 2 hours later! Make-a-Wish has equipped us with everything we need for a week full of fun! They gave us 6 free passes to Lego Land and all of our travel and food expenses and money for Marshall to shop at the famous Ron Jon Surf Shop on Cocoa Beach. With all the arrangements in place i.e, Wyatt’s pre-approved absence from school, dog boarding, Gramma Marsha’s respite care for her foster lady, and of course Big Daddy Joe’s long anticipated paid vacation we are suuuuupeer excited to get on our way.
Only yesterday after confirming the flight plans with Marshall’s cardiologist did I discover he is required to wear oxygen while in flight. As an airplane cabin is pressurized to 8000 ft. So now I begin the rushed and frantic search for a way to have a Portable Oxygen Concentrator available for him to use. Making calls at 10:30 last night to Southwest Airlines to notify them of our “special needs”. 7:30 am calling Oxygen2Go in Wyoming (so this gentleman is working at 5:30am) to get all the details about cost and equipment. Let’s hope my call to Make-a-Wish this morning will be fruitful as the cost to rent this handy piece of equipment will be somewhere in the $600-$700 range for the week.
My first experience traveling by plane with a Fontan patient has already proved to be extraordinary! But, all this will be a faded memory when I see that million dollar smile on Marshall’s face as he builds his sand castles and collects seashells, and rolls in the sand of Coca Beach at night.
Though he has an interesting way of showing his excitement….
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Marshall celebrated his first last day of school today 🙂 He told his teachers his favorite things about school this year were learning the letter “P” and dancing. Next year
Mars is 11 months post-op and we just got home from his cardiology check-up. I was expecting him to have bloodwork, EKG, and a holter monitor in addition to his echo. But he got away with just an echo. I was a little disheartened by the echo report. Dr. K, who is now Dr. M, reports his valve leakage has increased from mild to mild/moderate and heart function not quite as strong as his last echo. I was expecting to come out of there with a glowing report so I’m feeling a bit like getting punched in the stomach.
On a happier note, Marshall has grown a whole lot with his height now on the growth charts at a whopping 8th percentile! He’s grown almost 3 inches in the past 6 months!
Mars goes back up in 6 months just after his tentative Make-A-Wish trip to Florida.
It’s a beautiful day in Southwestern PA and Mr. Marshall has t-ball practice this evening.