Another great check up in the books for Sunley Summit! This trip had 3 days of tests and check ups in Houston, and Sunley was such a trooper. We try to make the trip special. I like to say “We put the fun in Fontan,” and I'm still waiting for the Fontan Go Clinic to adopt this slogan because I think it's fantastic.
We left last Sunday and spent the night with the Blankenships. It's always good to…
Read MoreWe try hard to make these trips to Houston fun for Sunley and for the siblings left at home. I left our three heart-healthy kiddos with a super fun babysitter and a freezer full of yummy (junk) food, and we booked a hotel in Houston that has a pool, which was Sunley’s only request. We got to the hospital around 10:30 am Tuesday morning, and we were hoping to run into our buddy, Oliver, who also had appointments that day, but unfortunately the timing never worked out with their down time between doctor visits. Sunley was very nervous about the “big stickers” that are applied during…
Read MoreSunley has a check up next week in Houston, and while we expect good news, Derek and I both can't help but brace ourselves every time. Strangely, it's not the same emotion as worry. We are just "girded," for lack of a better term; Armed in case of battle. Please pray with us that there are…
Read MoreOne year today since the Fontan. A year full of pink lips, Jiu Jitsu classes, lemonade stands, and lots and lots of ordinary days, which sparkle the brightest. We prepared for this surgery since well before Sunley was born, and that lead up didn't wear off immediately. We chose the surgical path for our unborn baby a month before she was born, knowing that we could get 3 or 4 years in and then have a failed Fontan. It’s a huge leap of faith that we made with the guidance of the most experienced doctors in the country. And it was either that (surgeries) or let her go. And I have to say, even if her Fontan had failed and she had passed away, I would still have been glad we made this choice. That’s a very deep and extensive topic that I won’t hash out right now. The whole experience changed my life in so many amazing ways. The enemy tried to shake me up and even break me, but what he didn’t know is that I’m a freaking glow stick…
Read MoreLook what He has done. Last month, we took the whole family on a trip to Houston specifically so the kids could be part of the delivery of the check from last year’s first annual fundraiser. Thanks to all of our selfless donors and lemonade stand hosts, we were able to write a check to the Fontan Go program for…
Read MoreI’ve lost track of the exact timing of everything, but for the past 2 weeks, our 3 youngest kiddos have been dealing with some kind of respiratory virus. Davis got over it pretty quickly, and mostly just had a runny nose. Sunley almost had to go to the hospital for low saturations and difficulty breathing, but she came through it without hospital support. Ruger has had a very hard time…
Read More"How is Sunley doing?" I never know how much information to give when people ask. Do they want a short answer? The whole schpiel?…
Read MoreTo avoid any unnecessary drama, I'd like to preface this post with the following sentence: I do NOT have cancer.
We spent most of Tuesday at Texas Children's, and most of Wednesday at MD Anderson.
Medical updates first:
Sunley gets to be DONE with her fluid restriction! We are so happy to not have to measure every single liquid, as this has included things like ice cream, spaghetti sauce, smoothies, and Sunley's favorite: Pho. Her chest x-ray was clear, and her echo looked good. She developed some collaterals about 3 weeks post op that are still there, around her descending aorta, but they are not currently causing any issues that we can see.
Read MoreWe have been home for nearly 2 weeks now! About 10 days or so before we left, I had a really out-of-the-blue opportunity to speak with Lauren Simonetti from Fox News on her podcast, “We’re Momming Today” about the nonprofit and about Sunley’s story (Link here, if you’d like to listen). Trying to condense my thoughts into 20 minutes was hard for me (if you know me then you know I can talk forever), but the whole experience was amazing. The fact that a New York reporter from Fox News would take the time to do that with me just absolutely blew my mind. I’m a stay at home, homeschooling mom of four — I do not have time to start a nonprofit, but I did it because I just knew I needed to lay some groundwork for God to do what He wants to do with this. And already, look what has happened! We have over 30 lemonade stands going up in 13 states now, we’ve sold hundreds of t-shirts and raised thousands of dollars to support a clinic that didn’t even exist 5 years ago. When will I stop forgetting to just let God take the lead? When amazing things like this happen, it makes me wonder how in the world I ever fall into old patterns of control and frustration. But we all do it. Thank goodness for fresh starts.
Read MoreWe've been in Houston for a month now, and as much as I would love to keep the slow, focused pace that we have here, we are all definitely ready to go home. Sunley had a checkup with her cardiologist this week, and it went well. Her oxygen saturations seem to have leveled at 96-97 which is great, and she's starting to gain back some weight after losing a bit during the hospital stay. She still looks super skinny to me, but I'm sure with time everything will come back. She's running and dancing again, and it's pretty much the most beautiful thing ever.
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