Summer update

The ENT doctor said that Rylie's left ear tube has fallen out and the right one is "working its way out." She got the tubes placed last August, and they usually stay in for about a year. So the timing is about right. He isn't going to automatically replace the ear tube. I was surprised. They are going to wait and see how she does without it. Since we've dealt with so much temporary hearing loss, I'm a little dubious about just seeing how it goes. I like knowing that her ears are open and she's hearing. But I am glad that he didn't say she needs surgery right away again, so that is a relief. We'll just have to keep getting those ears checked out. She is scheduled for another hearing test on September 2. By the way, our BMT doctor looked in her ears after the ENT doctor did, and she said that part of her tube is still there. She then showed it to me. I'm a little disgruntled with our ENT doctor, but we've had problems finding one we really trust and like. Even the one in Minnesota is hilariously terrible. If anyone has an ENT doctor they like in the Denver area, please let me know! 

Rylie is officially in potty training boot camp. She is doing really well, but she isn't quite making it to the toilet every time. And of course we don't even try not having her in a diaper during nap time or overnight. I'm extremely proud of how well she is doing. I can't believe she will be out of diapers soon and officially NOT a baby anymore. Rylie is scheduled to start preschool on August 25. Her schedule is Tuesdays and Thursdays from 9 to 11:30. We toured the preschool a couple of months ago, and it is really cute. I really liked how the kids help with a garden every year, and they have a lot of interesting learning activities. I'm hopeful that Rylie will flourish, but we're a little nervous about all the germs. I'm not ready for Rylie to be sick again, so we're praying for an extra strong immune system this fall and winter. 

Please be praying for Rylie's hands and fingers. I've noticed that they have gotten a lot more restricted lately, and I get very sad thinking about what that might mean. As parents, Lyle and I really want Rylie to do anything she wants to do, including playing a music instrument, drawing, or any fine motor activity. Her poor little fingers are starting to curl some. I trust that Rylie CAN do anything she wants, but it would be harder if her fingers keep curling. So the only thing I know to do is pray. If anyone knows of other treatments or preventative measures, please let me know. Thanks!

We're still doing therapy over the summer, but one of Rylie's teachers is on maternity leave. We miss Marlo, but we wish her the best summer with her new little one. DDRC, the organization where Rylie receives her therapy, is putting on a few summer activities. In a couple of weeks we'll be going to Luke's Farm in Evergreen with other kiddos that get therapy through DDRC. In August we hope to go to the "water day" they are creating for the kids. It's really nice to be able to do these things! We are really blessed that Rylie is doing so well. 

We're still doing music class, and Rylie loves it. Every time we finish a class, Rylie does the sign "more" and "music." She wants to stay for the next class. It's cute how much she likes it. 

We are thinking about our friend Danny with Hurlers who just had knee and hip surgery. We pray he recovers nicely and doesn't have any pain. We continue to think about Brinley and LB's families as they miss their little boys. Our hearts break when we think about how much pain Hurlers and MPS has caused for kiddos and their families. 

Keep scrolling down for videos from Rylie's trip to Kansas. :)