It's been so long since I posted that I had to figure out all over again what day # we were on. It's really nice being home and not thinking about the days as much. Yesterday Max turned 1 and we were very excited to have made it this far. Last year one of our nurses in the NICU gave Max an outfit for his 1 month birthday that was a size 12 mos. I remember thinking that it was very optimistic of her, but we made it!!! Max is doing ok for the most part, but his engraftment is still down at 23%. We're probably going to get another DLI tomorrow, but today we're going to Cincy for our IVIG. It'll be Max's first trip in his new big boy car seat!!! Enjoy the photos!
Happy Late birthday Max!!!! So glad you all are home -it's a lot to get use to. :) I'll be praying for the engraftment to go up and for you.
ReplyDeleteLove,e
Dear Max and Family,
ReplyDeleteOur son, Ethan has hurler's, he's 20 mths and T+149. Like Max, his chimerism hasn't settled down yet, and is declining slowly month to month.
My wife, Sarah, and I learn a lot from other family's stories. Thank you for sharing Max's journey with us.
All the best,
Todd Waddell
Portland, OR
www.caringbridge.org/visit/ethanwaddell