Great

Rylie is doing great. She has had a string of visitors from grandparents and is now enjoying some quality time with her aunt Jordie. Rylie is eating more and more, but she is still needing her night feedings. We do not need to give her boluses of food during the day anymore though. She is eating cereal, chips, pureed pasta dinner, and some pureed fruit. The biggest hurdle to get off the nose tube is drinking. Rylie doesn't want rice milk, juice, or water. She'll only take sips, but she needs at least 28 oz. of fluid a day. So I have to give her all her fluid needs through her tube since I can't get her to drink. I have tried fun cups and water bottles, but she just isn't ready to drink. (When Rylie was drinking tons of water this summer, it was because she was on a diuretic. She is no longer on that drug, so she isn't as thirsty.)

We are continuing some in-home therapies, and Rylie is doing great at those.  Our speech therapist told us that Rylie isn't that far off other kids her age, and since she had a lot of temporary hearing loss as a baby due to fluid build-up, it's amazing she is doing as well as she is. She scores normally at her receptive skills and a little below normal expressively, but if we counted the words she can sign, she'd be up to speed with the other kids her age. Physical therapy is also going well, and Rylie continues to make huge strides there. 

We're starting to think more about our trip to Minnesota for Rylie's 6-month tests. We'll be flying up there for her tests. We think we'll need to be there for about five days or so. We're not sure yet, but we're looking forward to showing off Rylie and all her skills. Hopefully she won't show off some of her new twoish ways! She can be quite opinionated these days! I'm reassured that this is normal behavior for two-year-olds, but it is hard to believe since Rylie has always been so easy-going. God, give me patience. :) 

Thanks for checking in on Rylie. We're just so relieved to have such great news to report!