Look 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 MoreAny time I have a period of silence on the blog, you can guess I'm in a period of "stretching" in some form. It's been a weird few months. We've had great highs and great lows. Over the past year, we watched 9 heart buddies pass away, all under the age of six. But we've also seen great victories, and in between all of that, had many moments of normalcy for our…
Read Morehard 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.
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