Feb 2nd, 2016
Hello amazing friends and family- Thank you all for the outpouring of support, prayers, and kind words. I can’t tell you how much it means to us. Sage did well in surgery yesterday. Dr. Warf found a new hemorrhage which may explain his right sided weakness and memory issues. Just like when he was a baby, they placed an external drain from the ventricles in his brain removing some CSF and blood… he has to stay still in bed until the blood clears so we have been busy making dubsmash lip sinc videos. We’ll send his favorite fight song (see attached). He’ll be going back to the OR in a few days once the blood clears from the CSF so Dr. Warf can have another look around. Keep the love flowing!
Liz, Stew and Sage
Feb 21st, 2016
Friends and family-
Thank you all so very much for your amazing kindness and generosity of love. We are so very blessed. We have laughed until we cried and cried until we laughed watching all the ridiculous ROAR videos that came our way.
Fingers crossed, we’ll finally be leaving the hospital tomorrow and returning to Portland! We’ve gotten very cozy here in our extremely decorated corner room that Sage calls our house, complete with everything one may need, including a transformer bed (turns into chair and car!). Dr. Warf decided not to take Sage back to the OR unless he needs a shunt. His external drain was removed Friday and he has remained stable. If that continues over the next day or so, I think we will leave without a shunt.
There are still many unanswered questions (why did this happen? will it happen again?)… but the brain demands that we embrace the mystery. We will do our best to give Sage every opportunity for recovery but also realize there are gifts in whatever path lies ahead. Even this long hospital stay, while difficult at times, has been filled with beauty and joy. There have been many moments of absolute perfection that could easily have been missed at home in our regular daily chaotic routine. Among my favorite moments…when I’m down on my knees at his level, he grabs my face in his hands earnestly and plants a kiss on each cheek and my forehead with a calm knowing energy that everything will be alright, “I love you, Mama.” Sometimes I feel that he is caring for me rather than I for him. He has certainly taught us more about joy and love than I could ever hope to impart. Interacting with other families in the hospital, I am constantly reminded that we are among the lucky ones.
Sage’s favorite prayer has taken on new meaning for us this month.
Guarded from harm,
cared for by angels,
here sit we,
loving and kind,
truthful and bold.
One last dubsmash in honor of our (hopefully) imminent departure!!!
Liz, Stew and Sage