Things are going well for our girl Ry. She's busy with swimming and school and therapy, and we are scheduling a trip to Minnesota for her two-year post transplant appointments in May. We were hoping to schedule them here, but since Rylie is in the intrathecal enzyme study, we need them to see her every year for three years post transplant. Since we're going anyway for that, we will get almost all her testing done there. The specialists are much more familiar with MPS, so it's a huge advantage to go there when we can. We are sad we will miss our friends Gracie and Wyatt this year. There will be no photos on the RMH slide with our buddies, but we are looking forward to seeing Torie again and, hopefully, meeting Josiah and his family.
Rylie has another week of swimming lessons and then we're taking a break until July. I posted a video from today. Watch her feet. She has learned to kick! And float . . . which is a terrific survival skill.
3 comments:
Good to talk with you. Lots going on for our Rylie and her parents. I am not able to link to the video. Any suggestions? L&B
Hooray for Our Girl! And hooray for a post on here...we love hearing about Rylie's days! We are so excited to see you all, and we are so grateful for your prayers and thoughts. Love, Cheryl and Torie
Wow... bummer to miss you! But so glad to know that Rylie is gonna be able to show off to all of our peeps in MN, they'll be so happy to see her. :)
Have a great and safe trip.
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