A Big Week for the Baby

Ellis's visit to Children's this week went very well. She had a video swallow study which showed that she is doing much better handling thick foods like yogurt, ice cream, and the hummus she loves so much. She's still having some difficulty with the thinnest liquids, but overall showed improvement from her last test over a year ago. We are still waiting on the official report to be sent to us from the speech pathologist but the unofficial word is that her doctor will most likely increase the amount of thick food she can take by mouth and still allow her to have water sips as she wants them. She is still going to be getting all of her nutrition from her feeding tube, but any larger amount she can take by mouth will be great for building up those swallowing muscles for the future. And I just have to throw in what a trooper the sweet baby is. The swallowing test  is scary for her with all the big, noisy equipment and lots of strangers around. And the whole time Greg and I have to feed her food that she doesn't really want mixed with yucky barium. She had a sad face and a big bottom lip sticking out, but she did everything we asked of her without a fuss.

The second appointment we had was our first consultation with Ellis's plastic surgeon, which also went very well but was a bit overwhelming. The short version is that there are many things he thinks he and his team will be able to do for Ellis, but we are not quite ready to decide which procedures will be done or when. There are many options for facial reconstruction that I didn't even know were possible, and it's all very encouraging. We have another consultation scheduled soon with a pediatric surgeon that specializes in facial nerve reconstruction and ear reconstruction, so we will know more about the overall timetable after that. It doesn't sound like we will be scheduling Ellis for surgery any time soon, but we are excited to be discussing the possibilities.

To make sure Ellis's week wasn't only filled doctor visits, our buddy Joe took us somewhere very fun yesterday: The Kentucky Horse Park! I can not adequately describe Ellis's joy at seeing lots and lots of real, live, huge horses and a couple of tiny ponies, one of which intended to give her a ride. Thanks Joe for the super fun trip!

Ellis loved saying "hi" and "bye" to every horse.

This little pony was in a special pen for chubby horses. Poor dear. Ellis made him feel better with sweet pats. 

This is the pony that Ellis wanted to ride. She greeted him and seemed excited...

until she sat on him. And then the freak out began. I was going to walk with them the whole time. However...

she wasn't having it. As soon as she got off, she made nice with the pony again and even said "bye bye" and "thank you" to the handler when we left. Oh, well. Maybe next time. 

Yup. I'm that mom now. The one who wears tennis shoes all the time because she is on her feet all day and everything hurts. 

Thanks Joe!