Hi friends and family!

Thank you so much for your prayers since our last post. Lewis is doing really great with his weekly growth hormone shot - he’s such a tough kid. With six under our belt, we’ve already seen 1cm of growth! Lewis is always excited to measure himself, and we were so surprised that he’s already started growing. We were struck this week by how blessed we are to be able to do a weekly shot instead of a daily one, that we’re able to do it ourselves at home, and that so far he’s been handling it so well. Prayers answered already!

But last week, Lewis experienced an adrenal crisis — something scary we’ve always known we’d have to deal with eventually. It’s always represented the greatest danger to Lewis’ life, and it’s the reason we are required to carry around an emergency shot with us wherever we go.

On Tuesday of last week, Lewis started acting a little strange in the afternoon, and then began to throw up around 5:30pm. He began throwing up every 15 or 20 minutes, and it was getting worse and worse. With no other symptoms, we didn’t know where it came from or what was wrong. But it was the kind of situation we’d heard lots about from others with the same condition (induced by what we now know was the flu). So for the first time, we had to give him his emergency shot and take him to the ER. he’d already thrown up close to 10 times and was dozing off by the time we got to the hospital. In retrospect, we wished we made the decision to give him his shot earlier, as his body was clearly shutting down and he was throwing up the oral medication we were trying to give him. They got us in quickly, but it was so scary to be in that situation we’d always heard about and worried about. He wasn’t responding much by the time we were in our room, but they got him another big dose of cortisol, along with IV fluids.

After a few hours, he woke up and bounced back really quickly. We didn’t have to be admitted to the hospital and were able to take him home by around midnight that night. We were just so thankful to God that he was able to bounce back quickly and that he got what he needed early enough. All of us ended up catching what he had, and it’s made for a really hard week.

But we also know this won’t be the last time Lewis will need the emergency shot and a trip to the ER. It’s just the nature of his condition and the reality of not having a working pituitary gland that produces enough cortisol for his body naturally to deal with stress in the body. In this case, it was a stomach flu that caused his body to go into stress, and the vomiting meant he couldn’t take his extra dose of cortisol orally as we normally would do. We’ve learned a lot going through the experience this first time. Lewis does so well in the day-to-day that it can be easy to forget about how fragile his condition makes his body, and this was real wake-up call to that for us.

On a different note, we do have a prayer request - but for Emmett this time. This isn’t something we’ve told many people about, but he is having a minor surgery on the morning of April 1. It’s nothing too serious, but we’re sad he has to go through it and are mostly just worried about having to put him under anesthesia. So, if you could pray for us on that morning — that Emmett would have an easy time going under and waking up, that the Lord would protect his body during the procedure, that the whole thing would go smoothly, & easy recovery.

Lastly, we wanted to share a really cool opportunity we had to share Lewis’ story with the media team at Stanford, where we had Lewis’ tumor resected last June. It’s hard to believe it’s been almost 10 months since then! The article gives a good rundown of the surgery, the complexities of the tumor, and just how miraculous Lewis’ outcome really was. It’s also a really special opportunity for us because it was through a similar blog post about a kid (Ari) who had the same surgery & was close in age to Lewis when he had his. His family was a huge encouragement to us personally during the weeks before surgery via email, they are so kind & generous with sharing their experience. That post was how we first heard about Dr. JFM and his approach and the whole team at Stanford — and we pray that our story will encourage other families who were as desperate for hope as we were and even consider our amazing surgeon. Here’s the link: https://healthier.stanfordchildrens.org/en/doctors-remove-highly-complex-brain-tumor-through-toddlers-nose/

Thank you for all your prayers and support. Happy Holy Week and Happy Easter!