T+88 Silver Linings

Torie had another appointment with Dr. Orchard today. He is very pleased with how she is doing so far. Her Echo from last Thursday showed a "trivial effusion" so we got to stop her Aldactone (diuretic) and she will have another Echo on Thursday. Her labs still look pretty good except for her liver enzymes -they jumped into the 300's, and her BUN was up a bit. Silver
Lining: we got to stop her VFend and Celebrex. And since she her blood pressure has been so stable, her Labetolol dose got cut in half. Dr. Orchard doesn't want to make any changes to the Lasix until after OR next Monday. She will get her 3rd dose of Intrathecal Enzyme, MRI of her brain, CT of her abdomen, G-Tube and hernia repaired then. She will have to be admitted to the hospital, but hopefully just overnight. Today they drew blood to check her engraftment level and her Enzyme level. Those results will take a while to get back. Dr. Orchard also said that if Torie continues to do well, and nothing unforeseen happens, our last appointment will be May 17th. 2 weeks from today and we may be able to start heading home! Hooray! Yesterday marked our 17th week since we've been here. We are SO ready. These last 2 weeks will probably seem longer than all our time so far!

Josiah had his repeat Echo today and although he doesn't have any more fluid building up again, he has to stay another week to 10 days. Silver Lining: We get to keep him and his family as our next-door neighbors for a little while longer! And maybe he will still be here when Rylie comes next week. Torie has told us "Rylie come to Ronald McDonald House and play with Torie." She is very excited, so I hope this surgery and hospital stay doesn't get in the way of her plans! We're pretty anxious to get her engraftment level back. We are praying she is still heading the right direction. Grow Cells, Grow! Engraft! Vic-Torie!