T+186 Back at RMH!

Our flight left Grand Junction Saturday morning at 6:00. We were all up at 4:00 (A.M.!) to get ready to go to the airport. Torie was so excited about going to Minnesota that she didn't go to sleep until 11:00 Friday night. She got a nap on the flight from Denver to here, and Ronald McDonald House had a room for us when we got here. Hooray! Torie was so excited to see the House, and Jerry, and the treehouse...she played like she hasn't for months! Sunday she played the catch-up-on-sleep game...she got up at 10:30 in the morning, and took a nap from 1 until 4! And she wasn't the only one! Josiah and Rachael and Jim got here Saturday afternoon and boy, it was great to see them. Josiah looks awesome. He's running, and climbing, and starting to talk. He's so healthy and perfect - I think he should be the BMT posterchild...this is how transplant should be! Then we got to see Kim and Pat, Joseph's Mommy and Daddy. He was discharged from the hospital yesterday, but we haven't gotten to see him yet. But we can't wait! Today we saw Baby Sydney, and she looks so good. She grew up while we were gone though...it won't be long until we're calling her Big Girl Sydney! It really is like coming home. We are so blessed to have this big family here as well as in Colorado.

We started our week of appointments this morning with 9:30 labs and a 10:00 appointment with Dr. Orchard. And that was all we had scheduled. So we made a plan to go to the museum to see the Dead Sea Scrolls with the Carman's. Unfortunately, my mother broke a mirror this morning while we were getting ready to leave. Uh-oh. We got Torie's labs back and her hemoglobin (Hgb) is down to 6.0, and her hematocrit (Hct) is 16.9. So they had to take more blood to send to the Red Cross and she will get transfused tomorrow when her blood is ready. She is on the last week of her steroid wean, and while it looks like the Nephrotic Syndrome is in remission, the Hemolytic Anemia doesn't seem to be. So she won't be getting her line out on Wednesday, she'll be getting a new one that day. And then we (well, "we" don't have to decide anything - Dr. Orchard does!) will have to decide what to do about the anemia. Torie gave Teddie a thorough assessment after Dr. Orchard was done with hers, and we went to radiology after that for a chest X-Ray. We ended up getting back to RMH about 1:30. It happens every time we think we're going to have a short day!
It was great to be back at clinic and see all of our friends there - Dr. Orchard, Theresa, the nurses, and the techs. Everyone loves Torie's curly red locks!

We got to see the Carman's while we were there, and then we got to meet Ryan. He has Hurler's Disease, and he was transplanted when he was 16 months old....17 years ago! Yes, 17 years! I can't tell you how much hope this gives us for Torie's future, and for Josiah's, and all the rest of our Hurler family who have chosen the transplant route. All it takes is faith, hope, trust and a bit of fairy dust. And happy thoughts and prayers from you! Thank you for helping us get this far...Vic-Torie!