Monday, Monday

Today's clinic visit was busier than normal. After a whole bunch of blood work, we had an appointment with our BMT doc, or should I say our doctor had an appointment with Rylie? She had a play stethoscope that she insisted to use to listen to his heart! She definitely knows what to do with all medical paraphernalia. After Rylie finally allowed Dr. Orchard to listen to Rylie's breathing, he thought it might be best to move Rylie's CT scan that was scheduled on Thursday to today. We did the scan without anesthesia like we have done in the past. Lyle and I sing a lovely rendition of Twinkle Twinkle while one of us holds her arms and one of us holds her legs. It's not pretty--the music or the pinning down part--but the scan is so fast that we got the deed done. We're so proud of Rylie and how brave she is during all her tests. We haven't heard anything back yet about the CT scan, but if it was bad I know they would have called us right away. In the mean time, we're just keeping an eye on her and making sure she'll be ready for Thursday's lumbar puncture and ear tubes. 

After we got back from the CT scan, we decided to go ahead with the nose feeding tube. We thought we'd probably wait until we were in Denver, but after this weekend's poor showing of eating, we went ahead with it. We hope to have the transition off of TPN to the NG tube finished by the time we go home on Sunday. Rylie is handling it all in stride. She knows there is something foreign in her nose, but she is leaving it alone for the most part. We've started a little formula feeding with the tube, but we're going very slow in order to give her tummy a little time to get used to it.

We also had a surgery consult today regarding Rylie's umbilical hernia. Because of Hurlers, Rylie is preconditioned to hernias, and she developed one during her hospital stay. It doesn't hurt her or cause any problems right now, so we're going to wait for the repair until Rylie is a little stronger. Hopefully we'll have it fixed when we come back in November for her next round of tests. 

God has been so good to us. We give Him all praise for Rylie's good reports. We still need more prayers though. Please pray that Rylie doesn't get sick this week and that Thursday's procedures go well and that all of Rylie's tests come back with great results. Also pray for safe travels on Sunday. We're praying extra blessings on all of you that have been praying and helping us during this hard time for our family. We're also continuing to pray for those kids who are still on 5D. Please, please pray for our friends that are having a more difficult time than Rylie right now. They need God's miracle.