We have now been in the hospital 92 days, and are 71 days out from transplant. The past several days have mostly just been more of the same for Raul. It has now been a week and a half since he needed GCSF, which is great. He continues to have his fevers on and off each day, but his fever curve has gotten a bit better. He got a blood transfusion Saturday, then again Tuesday. Platelets on Sunday, Tuesday, and Wednesday (I think). He has not had another dose of the Soliris since last Friday, they are working on figuring out a schedule for him. He has been following his regular dialysis schedule, but the good news is that he has continued to pee more. After having not peed a measurable amount for several weeks, this is very exciting! Over the past several days I have been trying to get Raul out of bed more often. We told him he needs to practice so he can sit up to open his Christmas presents! We are also trying to get him out of the room more often to practice, as we are hoping to get a pass for a few hours on Christmas. Last night I got him to sit on the floor with me to do a craft of making homemade bouncy balls.
On Monday day we got him to go downstairs to check out the setup for the video chatting with Santa, though he did his chat in the room so he didn't have to wear a mask or use the stroller cover. Raul got all dressed up in his collared shirt and bow tie with Santa faces! He even sat up willingly while talking to Santa! He was very excited, and smiled when the video came into the room, but then got a little overwhelmed as there were a lot of people in the room. Today he got to go downstairs to pick out a few presents, which he was pretty excited about! We went at the end of school, and his teacher came down with us to help him pick the best trucks!
We are very sad for Anton's family after his passing last night. I am thankful that I got one last chance to see Anton last weekend. Raul does not know, as death is not something he understands right now. But I am sure he will miss seeing Anton in the halls and looking at the pictures on his door! We met their family for the first time almost four years ago, when the boys were both two years old and had been in the U.S. less than a year. We have both been on crazy journeys that have intertwined, and given us the opportunity to see each other, several times over the years. And while at home Anton's mom, Vanessa, was always there to talk or give advice on the issues our boys have had in common!