Longer leash

The PA at the BMT clinic is letting us wait a month before we go back to see her. I'm really happy about the longer leash, because Rylie hates getting poked for labs so often. We do go to the endocrinologist for the first time on Tuesday though, so she won't get much time off before another poke. She is pretty good about it though. Today she held out her arm when the nurse came in and then started crying. It was like she was saying, "I know we have to do this, but I don't have to like it!" They gave her a stuffed bear and some stickers afterward, and that seemed to easy the pain some. 

I asked at clinic how much longer we will be going to clinic and not Rylie's pediatrician for sicknesses and other things. They said as long as Ry is showing signs of GVH then we're stuck with them. They still think her red, itchy, and flaky scalp is GVH related. In my medical opinion (HA!), it is only cradle cap or really dry skin that just won't go away no matter what I do. I suppose they think she is still having some donor cell reaction there because the steroid shampoo and oil has not made it go away, but it is minor enough that they aren't too concerned (and they are letting her stay off of CSA). I actually prefer the clinic for Rylie's care, so I don't mind going there as long as it isn't very often. It will be weird going back to Rylie's pediatrician who is not familiar with Hurlers. 

The weather has been extremely warm and sunny, so Rylie and I have been doing lots of outdoor activities. We went to the zoo on Monday and then to the park yesterday. She can now go down the slide by herself, which is a huge accomplishment. Six months ago I thought Rylie would NEVER play on the playground. On Friday we went to Target and got Ry a T-ball set. She is really cute when we help her hit the ball off the stand. She looks really surprised and says, "Whoa!" She has started to poke the ball with the bat to make it fall off of the stand, but she hasn't quite found her power swing yet. We have all summer to master that. 

Lyle's parents are coming to visit tomorrow, and we are planning to head to the mountains for a few days. We are really looking forward to a couple days of skiing while Granny and Granddad play with Rylie!   

We hope all of you are doing well, and thanks for checking in on Rylie. We love reading your comments.