Monday, June 13, 2011

Some Encouraging Signs

For those of you that have been able to get on, we apologize for any inconvenience with the blog. If you would do us a favor and post a comment on this blog and let us know you can read it. There are only about 30 or so that are signed up w/ us now, so hopefully since we haven't heard many issues yet (only a couple) that everyone's been able to get on.

As far as Karsie's progress goes, we're seeing some great signs. First of all, she continues to develop with speech and vocabulary. She is basically a normal kid at her age except her eating and her tummy.

Speaking of eating, we are pleased to see that she has really gotten the hang of it. So much so that we are starting our own make-shift process of weaning her off of the tube food. She was getting about 580 mL of food each day (400 at night and 180 during the day). It seemed to us that the days she didn't get her food at night (usually a mistake or she leaked a ton during the night) that she would be more interested in food during the day. So, we decided to try and slowly decrease her tube food and see what that would do (we did a bunch of research and talked with other parents before we tried).

The good news is that she was taking more to her food. The bad news has been that she still can't quite feed herself enough to sustain her weight. In fact, right now she's not really growing, but she's maintaining her weight. We've gotten down to 425 during the night and nothing during the day and she's still maintaining. Hopefully, she will begin to eat enough for her to grow soon.

The signs we're seeing, however, are positive. She likes lots of different types of food, and she's willing to try them. She is now shoving food into her mouth in bigger chunks. It used to be that she would eat little nibbles here and there, but lately (a few weeks worth) she's been putting handfuls in and working it well.

Hoping that this trend continues...


  1. Yay for Karsie eating! Grampa

  2. Good Job Karsie!!!! We are so happy to hear that you are one step closer to being g-tube free!

  3. first post i've been able to see in months! so glad that you are doing well :)

  4. I can read it, glad to have you back in my feed reader so I'm notified when you post.

  5. First post I have been able to see, as well. I have continued to pray for you all, and I just had a feeling---maybe I should check out the site the way I used to, and here you are. Thanks for allowing me back in to see Karsie's progress.