Wednesday, September 29, 2010

Update 9-29-10

Tube Site - things are going well here. Karsie has not been bothered by is really since we changed her ointments. It still looks a slight bit red and irritated, but it's so much better looking than before. We have another week with the ointments and then we need to start putting on the medicine that kills the granulation tissue. That tissue is growing around the tube and needs to go away. We usually put the ointment on once a month or so, but that ointment exacerbates the problem we're trying to get rid of, so we have had to stop that, thus making her tissue grow.

Eating - Still an issue, but Karsie is starting to slowly explore food again. She likes eating junk food that's for sure. She really likes to taste the food and play with it in her mouth, but she won't swallow the least most of the food. If it doesn't dissolve right away like cheese puffs, she spits it out.

Physical Therapy - Karsie has now graduated from physical therapy! She has met all of her milestones. She is still a little behind the curve, but not enough to worry about anything. She is starting to quickly move from crawling to walking. She is in the beginning stages of standing up on her own without support and, as you saw, take small steps. She has repeated her stepping since Sunday's post.

We are a month away from Karsie's plastic surgery appointment where we meet with the surgeon to discuss her future. We're pretty sure we'll have a date then, which is scary but necessary.


  1. Hi Michelle & Kevin, I have a question. I'm sure this has been explained, but here it is. The tube site is for feeding. Does having this inhibit the eating issue? Is the tube something that could potentialy go away if she eats? I appreciate your patience as you have been so amazing in sharing every part of Karsie's journey. After seeing her, she has a special spirit about her. Blessings, Cynthia

  2. Cynthia. As far as we know, yes. As soon as she shows that she can eat and will eat, the site will be closed up. However, this will not happen until she has had her closure surgery. They don't want to take it away, have her surgery, kink something that makes her revert back to not eating, and have to make the hole to her stomach again. At this point we expect that it will be at least a few months if not years after her closure surgery before she gets it removed. We have heard stories of 7-8 year olds that still have it. We hope that she doesn't take that long.

    Karsie will hopefully have her closure surgery some time in 2011. Therefore, she will be 2 at the earliest before it's stitched up. Not that she will need it that long. There is a possibility that she eats normally and we will just close the tube hole while waiting for it to be stitched up. Hope that makes sense.