hard time getting things done this week. Ruger is over whatever virus(es) had him so sick, but unfortunately his asthma medication is causing a lot of problems — So we are working on figuring all of that out, and it has been very stressful (that sentence is packed with a lot of backstory and stress that I won’t get into). I woke up Monday with total laryngitis, so we decided that I should stay home while Derek took Sunley to her Houston check up…
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 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 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 MoreI have our final number! I am so beyond humbled and grateful to announce that our first year as a nonprofit raised…
Read MoreThe more I am emptied, the more I am filled. What a weekend it was. We ended up with about 30 lemonade stands going up in 13 states, which far surpassed my expectations when I started Write With Light Project. As if that wasn’t enough, we had unexpected news coverage at at least 4 of our stands (click here to see), and the amount you all have raised for this has already passed my initial goal. I don’t have a final total yet, but when I…
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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