It feels like I just made a blog post celebrating Sunley’s 5th birthday, but here we are a whole year later and she is turning six! Toddler days are long behind us — we have a little girl now, itching to be older and in charge of the world. The week leading up to her birthday closes a months-long resurgence of memories and feelings, heavy with conflicting emotions. This week is my own weird version of a Holy Week, because
Read MoreWe had a quick trip to Houston last week to revisit some ENT issues with Ruger, and to see our friends, the Blankenships. Oliver, their son and Sunley's first heart buddy, just celebrated one year with his transplanted heart. If you have followed Sunley’s story for any time at all, you have definitely heard about Oliver and Ivy (Ivy has her Fontan coming up this year sometime). Our reunion was as beautiful as ever – to see them in their fresh start new house, and to be able to wrap my arms around both of those boys, and their parents. What a gift. As with any trip to the hospital, however, I came back with echoes in my head and a heaviness on…
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 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 think about the story of Jairus in Matthew 9, Mark 5, and Luke 8 pretty often. I see it differently now than I did years ago. I’ve done the whole pleading-with-God-for-the-life-of-my-daughter thing. I know the type of yearning and begging that arises out of the deepest depths of a parent’s soul. Physically, it feels like it begins in your gut — it’s nauseating, actually. I know the simultaneous faith and frustration: Knowing Jesus could heal her if you could only…
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 MoreI think I'm long overdue for a recap on Sunley's condition, and what exactly this Fontan procedure did for her – and what it means for her health in the future. The surgeries she has had are called “palliative.” That means that none of these cured or will cure her heart condition. No one has ever been able to give us a very accurate prognosis for her because there is very little data
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