Wow, can’t believe my last lewis update was in December. It’s been a really great 5 months for Lewis! In February was granted a Wish through Make-a-Wish Nebraska and we were able to go to Florida where we stayed at Give Kids the World Village. We got to go all four of the parks at Disney World, go to Universal Studios, see the ocean (picking sea shells on the beach was one of the things he was most looking forward too), and see the Kennedy Space Center! It was an amazing trip and we have so many wonderful memories - the kids talk about it all the time! It was magical and lifts up my heart just thinking about it. 

Health wise, Lewis is doing well right now. Last fall/Winter it was not looking great, but he responded to the steroid again and we were able to get his PLE back under control.  We are now down the lowest dose of the steroid and will not come off of it this time. He is going to maintain on this low dose and hopefully that will keep him from getting his PLE triggered by another virus. While his immune system is better now that his PLE is under control it is still not great. He has low lymphocytes and sees to pick up everything he comes into contact with. However, he has been able to get over them at home, using oxygen. He has had no hospitalizations, which has been such a blessing.  His labs are looking good and we have been able to space them out to monthly or even longer which Lewis has really appreciated! 

Our cardiologist was able to speak with the Colorado Children’s transplant team as that is most likely where Lewis will go for transplant and they said wait times for someone like Lewis is on average around 12-18 months in the hospital before getting a heart, and to do everything we can to avoid that as long as possible. So that is the plan, avoid transplant until we can’t! That will be our next step, we just don’t know how long it will be. We are praying for years!

He will go see his cardiologist in Michigan in June and will be having a heart cath on June 13th. We will update with how it goes. 

In the fall Lewis is going to Kindergarten and I am going to be his 1-on-1 health paraprofessional! Milo is going to go to daycare. So lots of big changes for us this fall, but we are all excited for this new adventure. This fall will be a big test, to see how being on the steroid helps with being exposed to all the viruses at school. And just a big trial year for Lewis. Going from 8 kids and 4 adults in the room in preschool to 1 teacher and aid to 24 kids is a big change, as is going from 3 hours 4 days a week to 8 hours for 5 days a week. He is so so excited to go and we want to give him as many normal opportunities as we can!

We are asking for prayers that Lewis can maintain his health, that his heart cath goes well, and for the transition in the fall for really our whole family! We are so thankful that Lewis has bounced back and we were able to get his PLE under control again. Life with him is always a roller coaster, but having that trust in God that he is with us every step of the way is a comfort. In the fall when his PLE became active again, I had just gone on our parish retreat and I was able to experience this peace that calmed my anxious heart and helped dispel the many worries I had. I felt truly that it was going to be okay. That I knew it was out of my hands and in Gods and either way he was going to take care of it. I’m just so thankful that now was not the time for him to go to transplant and we get more time before going on that Journey. Thank you for keeping Lewis and our family in your prayers ❤️