MPS Family and Rylie Update

Nothing here seems important to blog about when several of our other MPS family members are in the hospital. Torie is 17 days post transplant, and we're praying for a quick recovery for her during this tough time. Josiah, whom we've never met but have been following, is also 17 days post transplant. They're both in Minnesota. Wyatt and parents are traveling to Minnesota this weekend as Wyatt's back surgery is scheduled for Wednesday. You can check out their blogs here:

http://toriebrady.blogspot.com/

http://thejourneyofjosiah.blogspot.com/

http://www.caringbridge.org/visit/wyatt

Please join us in praying daily for these courageous families!

As for Rylie, she is doing very well. We're so thankful for that. Now that she has her new ear tubes, she is still showing some hearing loss in her right ear, but her left ear is doing pretty good. We'll get another test in 3 months. Ry wears her hand braces at night. They're also known as "purple gloves." The gloves have three velcro straps for her fingers on each glove. I'll try to get a photo, because I really can't describe it well. She doesn't like the gloves. She tells me every night that she doesn't want them. We have old hand braces that we strap to her stuffed dog at night, too, so that helps. Part of me doesn't think the braces will do much good, but for now we're trying our hardest to keep Rylie's fingers as straight as we can.

Rylie starts private swimming lessons tomorrow. She's taking a special program called ISR. They really stress consistency, so she will go 5 times a week for 6 weeks! Her lesson is only 10 minutes each day. Apparently there is some research on how successful this method is. We're hoping that Rylie picks up on it quickly and learns to love swimming (even though her mom isn't a big fan, we think it will be a good skill for her).

Potty training is really coming along. I thought it before though, so I'm not saying we're done. I'm just saying that she's been out of diapers during the day for 6 weeks. We have plenty of accidents, but way more successes than misses. So, all in all, I'm happy with the progression.

We're very happy to report that Rylie has grown an inch in the last 6 months! Growth is a concern for kids with MPS, so we're happy to see some upward growth.

That's all that is new in Rylie's world! She'd probably have a lot more to say though if she could type. Maybe some day she'll take over this blog. If she was typing, she would say, "Come to house? Play?" She loves to invite people over to play, especially on her play phone. And she would probably want you to play "soccer team" with her or hide-and-go-seek. She could do that all day!