Day 4

First I want to start off by thanking everyone who has reached out personally to me and asked how Evie is doing and praying for her. I can’t thank those enough who have helped us in some way from gifting food and any other contribution to her, to helping with the other kids (love you) and the dogs, to help with the house, to those in the family within the medical field helping (love you too), and for the one crazy enough to make an 8 hour trip just to come pay us a visit (you know who you are). It all means so much to us. She loves seeing videos from her friends at school and the rest of those who have shared a video saying hi. Her immune system is pretty low right now and she will start some prophylactic antibiotics to protect her from PJP (Pneumocystis jirovecii pneumonia) but within reason, I’m sure she would love to take visitors soon! For anyone wanting to send cards, she’s in room 415!

Today was a good day! She had her single dose of Calpargase and won’t receive that again. It went well and her labs are still looking promising. She’s doing much better with taking her medications (used to take an hour of convincing and now we’re down to maybe 2 minutes). Wilson, Addie and Maisie all were back today for a visit which was longer than yesterday. They colored together, watched a movie together and Evie shared her play-doh with them. Evie enjoyed making Maisie laugh. She receives PT 4 times a week while here, so today the kids got to watch her do that and Wilson even joined in. We spent some time today brushing her crazy hair and enjoying that while we still can 🥺 Tomorrow she’ll go in to get her PICC line and remove her femoral line (in her groin which she’s not a fan of). While they’re doing that, they’ll also go back in the spine to pull some more fluid to test. The doctors seem happy with her stats so far. 🤞🏼 She’ll be able to take a proper bath tomorrow also, which if you know us, the baths have surely been missed!

Every Day Evie… You’ve Got This!