Appointments over, vacation begins

Rylie's appointments/procedures went very well this week. We haven't heard back from her engraftement and enzyme level lab tests. The first good news was that Rylie continues to show no signs of carpel tunnel. They tested while she was under for her MRI. Next, Dr. Walker (ortho knees and hips) said that Ry's knees haven't changed much from last year which is great news. She is not showing much in the way of knocked knees, so we are hopeful that she could even straighten out as she grows more. We talked more about her hips as the xray showed a fairly typical hip socket for Hurler kids. However, Dr. Walker said everything was very mild so we'll continue to watch and see what happens over the next few years.

Dr. Vanheest (ortho hands) was not too concerned with Rylie's hands. She said her trigger fingers are typical for kids with Hurlers, and she didn't have much to say about her bi-lateral curvature since her fingers can be straighted easily. She did suggest a different kind of splint to try at night. She also suggested to do some finger stretches as part of our routine to help keep Rylie's range of motion.

Neuropsych went well, too. We have a smarty on our hands. Rylie made gains in every area, as we knew she would. She excels at visual perception and memory. She blew the doctors away during a memory game. They recommended she should continue her speech and PT, and also add in some OT.

More good news. Rylie grew 8 cm since last year's visit with Dr. Polgreen (endocrine). Her growth rate puts her about 52% of her age group. On the growth chart, she has improved to be 15% (from 7% last year)!!! This is HUGE for Rylie, and we are so excited to see her growing and improving so much without growth hormones. We pray this continues for her!

We got to see our pal Torie again. Oh my she looks good! I resisted the urge to squeeze her and kiss her since I didn't want to scare her OR give her any of our germs. She is eating so well after transplant and barely needed TPN. Her Grandmas have been such great caretakers for her, and I know they are anxious to go home and see Torie's mom and dad very soon (hopefully Tuesday?)! We are wishing them a fast and safe trip home to Colorado, and we look forward to play dates in the years to come.

We left the RMH this afternoon and headed north to Duluth (about 2.5 hours). Our old neighbors on 5D and at the RMH during Rylie's transplant live in Duluth and they were kind to invite us over. Rylie played with Erin (8) and then asked her to come with us as we were leaving. Ry didn't want to leave her new friend!

Tomorrow we are going to explore the area and play in the hotel pool. We are celebrating such great news this week and Rylie's health! Three cheers for Rylie!