Check-ups

Rylie and I stayed at a hotel for a couple of nights until we got in at the Ronald McDonald House. Last year she called the RMH the Donkey Donkey House. This year it's Old McDonald House. 

Not all of Rylie's labs have come back, so I don't know anything about engraftment or even her thyroid level. Pulmonology told us that we don't need to come back unless something crazy happens, so it's nice to get a smaller list of annual appointments. Endocrine went well, but she has slowed on growth this year. Last year she was at 15% for her age in height. Now she's around 7%. It's a matter of a couple of centimeters, so it's possible that she'll make a lot more gains this year. We've been warned that it is very typical to see kids with Hurlers post transplant do very well in growth for several years and then start to really slow down. Ages 6, 7, 8 are when growth rate can fall off the charts. We'll trust that God has special plans for Rylie, whether that means she is short or not. 

The worst news of the trip so far has been that the orthopedic doctor here thinks we should plan on Rylie having hip surgery and possibly knees within the next 2 to 3 years. They haven't changed much since last year. They aren't really that much worse, but they aren't any better. He is concerned about premature arthritis and hip pain in early adult years if we leave them the way they are. Apparently there is no good way to fix them once that starts. We are sad when we imagine what this operation would mean for Rylie, but we do want the very best for her. 

We have had so much fun visiting with our Hurler family friends and meeting a couple more. We met Ethan who is at day +60 and Jacob who is just starting the work-up for his BMT. Without Lyle here, this week would have been awfully lonely without Gracie, Wyatt, and their parents. Rylie loves seeing her friends in the halls at the hospital in between appointments and then for dinner at the Ronald McDonald House. It has been nice for her to see that other kids are doing the same thing she is. 

We hope that Rylie's MRI goes well tomorrow so we can catch our flight. We are anxious to see Lyle, the kids, and Lyle's parents who have pitched in and helped so much while we've been away. 

Our friend Ireland who we met when we were here for Rylie's BMT 3 years ago. 

She blows kisses that melt your heart.

Rylie, Wyatt, and Gracie (some of the cutest kids I know!)

All grown up! I remember when she didn't have to duck to get through the door.