As you can probably tell from the pictures we just posted, things are going well. We haven't been to Children's or had a doctor's appointment in over two weeks! It's weird because I keep checking my planner thinking we are missing something but I haven't gotten a phone call telling us otherwise so I think we are doing alright.
Alex is a great little traveler and festivarian. She loved being in Telluride. We camped at an awesome campground (with a couple 1000 others) and it took us awhile to get up and moving in the mornings and pack for the day. Alex was the first person up in the entire campground each day (before 7am) but we took our time to enjoy the mornings: cooking breakfast, sharing coffee, hanging out with our neighbors, taking walks and listening to people playing music all around us. As soon as Alex would start getting restless in the camper we'd put her chair outside and she'd be good to go until we took off to the festival. We took a 15-20 minute bus ride in and out of town each day and Alex loved this too. She spent a lot of time in her carrier with mommy while in town and hung out in her tent at the festival when the sun was out or it was breezy. It took us about 8 hours to travel to Telluride and another 7 back but Alex was a trooper both ways. She slept over half the time which was nice and didn't protest being in her carseat all day.
We've been meeting once a week with both PT and OT and working on Alex's physical development, eating and motor skills. She has low muscle-tone so we focus a lot on head and trunk control and hope she'll be able to hold her head steady for longer periods of time and eventually sit up on her own. She's definitely getting stronger every day and making us so proud. During tummy time, she pushes herself up for longer and if we put her on her side she can turn over on to her back. She is also interacting with her toys and surroundings more, and one of her favorite things to do is pull out her oxygen cannula and chew on it. We try not to laugh because we don't want to encourage this type of behavior, but it's so funny sometimes watching her be sneaky about it or blow bubbles with it in her mouth.
Alex wears her pink leg braces, also known as Ankle-foot orthoses or AFOs every day to help support her ankles that are turning out. They go up to her knees and don't seem to bother her at all. We have them on about half the day right now and will work up to her wearing them all day this summer.
We are still waiting to hear back on the sleep study and have a lot of appointments at Children's coming up in the new few weeks. It's so good to hear from everyone and we can't tell you how happy we are to read the comments you leave. We send our love and a big hug for all the thoughts and prayers.