hi everyone!

just a last minute prayer request for Lewis. he is having his 6-month MRI today (friday) morning at 7am. prayers that getting his IV & sedation goes smoothly and for more clear scans! we will go over the results next wednesday, and would love prayers for peace til then. we also have an neuro-ophthalmology appointment next week.

a few updates - unfortunately, we were not able to get insurance to over the weekly growth hormone shot after contesting it. last week, we switched to the daily growth hormone shot and Lewis has been taking it really well. today he actually said he preferred the daily over the weekly because it hurts less, which is such a praise! it has been an adjustment though to give him his shot & poke him with a needle everyday, but apparently it is harder on us than him haha - that’s how it should be!

Lewis’ eye surgery in november went very well! his recovery was great and it is very cool to see how his eyes have straightened out. you’ll have to check them out next time you see him! he was very happy to leave the eye hospital with a handmade minnie mouse quilt from the elks volunteers (they support the children’s eye clinic where he got his surgery). thank you to everyone who was praying for this surgery and thank you for continuing to pray for improvements to his vision!

we are having some changes at Lewis’ oncology clinic. when we go over his MRI results next week, it will be the last time we will see Lewis’ primary care nurse who has been with us ever since Lewis started receiving infusions. she has been the most amazing support who was able to access Lewis’ port with a needle in under 10 seconds, all while he was eating a bar, without him even noticing or crying - truly impressive, starting when he was only 15 months old! she is a true light of joy, so sweet & fun to be around, she made Lewis’ visits to clinic SO much fun with how she loved on him & brought him all around the clinic, letting him talk to everyone, instead of dreadful & sad. she really walked closely with us through a very tough time & was a bright spot in our journey. she is moving to another clinic, as she has been working in children’s oncology for 13 years! a literal angel. so, it will be very bittersweet to say goodbye to her next week, we feel so lucky that she took care of Lewis & us! we will miss her very much.

we also said goodbye to Lewis’ oncology doctor last month, as he moved to a different state. it is the end of an era in a lot of ways, we are thankful for the dream team that got us through the hardest parts of his journey.

lewis (18 months) with his favorite nurse!

on another note, Luke unfortunately was laid off from his job of 7 years last week. the day before he was laid off, he wrote this very nice piece about Lewis & his time at CES, kind of serendipitous in a way. he has had a lot of support from colleagues & a few leads on jobs, but he is looking to get back to working if anyone wants to hire a tech editor! this could put us in a tough spot with medical insurance in particular, but we are hoping and praying for the best!

we are enjoying the extra time together as a family for now. at least once a week, one of us wishes that we were back on our make-a-wish trip in florida at disneyworld & give kids the world. we are so grateful for those unforgettable memories!

thank you for covering us with your prayers! we are very thankful.