Saturday, August 14, 2010

Update 8-14-10

A little delay in the San Diego birthday pictures. We realized that we really don't have a lot of pictures as we were busy doing things. So if you have cute pictures send them our way so we can post them.

Karsie has been doing very well lately. We are completely onto Pediasure now and Karsie is doing very well with it. We're hoping it really helps with weight gain. Not that it is an accurate measurement, but she feels much heavier at times.

Karsie has also completely changed her eating desires.....again. A couple of weeks ago she was eating puree foods exclusively. She would eat a ton. Now, she will barely take a bite, but she'll wolf down solid food like chicken bits or crackers. We are hoping for more of a balance, but she doesn't seem to be listening.

A bit of good news: She had her first day of really good drinking the other day. We gave her some water and she drank it quickly. She got so good at it she took it from our hands and drank herself. For those of you who don't know she is behind on her eating habits and WAY behind on drinking. Since she's had a G-Tube, she's never had to drink. So we have been busy trying to introduce drinking to her and trying to have her associate drinking with positive feelings. She also coughs a lot when drinking like she doesn't quite close her windpipe. We're hoping she grows out of that soon, but when she took the sippy the other day she started off coughing a bit, but she got the hang of it after a while and wasn't coughing as much.

We're about to start work again this coming week. Kevin is full time and Michelle is job sharing with another teacher. So Karsie will go to Auntie Becky's for 2-3 times per week. We're so lucky to have people we trust watching her.

Our next step in Karsie's ultimate closure goal is coming up. We're going into G.I. for another appointment in September and we're going to try and schedule an appointment with Dr. Gossman (plastic surgery) during that time. Hopefully Karsie will be big enough to start expanding her stomach. We have decided that while compression wrapping is the less surgical route, it really doesn't do as well with G-Tube babies. We started trying to wrap Karsie's omphalocele a while ago and she leaked so much during that time. We may try again when she is not leaking, but we think we're ready to just subscribe to the tissue expanders. We hope to have some news on that front soon.

Til then...

1 comment:

  1. I'm so glad she's doing well! I'm sure she'll be drinking and normally soon, just give it time. She is such a little inspiration.