Tuesday, November 30, 2010
We went into G.I. with a few frustrations:
First of all, we were irritated that we couldn't get a handle on her leaking. Karsie has been leaking out of her G-tube for a while now, and sometimes it's quite a bit, and sometimes the entire Pacific Ocean comes out of her stomach hole.
Also, we have been frustrated that her site continues to become irritated and itchy for her. (irritated and frustrated at the situation, not the doctors).
So after a ton of consulting with each other, the plan is as follows:
1. We will try to kill her granulation tissue with Kenalog, a medicine/steroid that reduces tissue. Instead of just giving it to her for 7 days, we will give it to her for 14. There was serious consideration given to just burning it off, but they didn't do that. If the tissue doesn't go away, however, they will probably have to do that as the tissue is the main culprit of the leaking.
2. Also, to reduce the leaking, they have decided to reduce the amount of volume given to her. In order to do this, Karsie will have to be put on a higher calorie per oz. diet. Hopefully this will do a few things. We want it to reduce leaking, to help her get more hungry, and also to gain weight. She was about the same (a little more) than when we went in 2 months ago.
3. To reduce the rash, Michelle actually researched and suggested ILEX, which is a barrier paste to go onto the skin. We asked our omphalocele mom friends and after a bit of hunting found out about it, so we asked the doctors and they ok'd it. So far, it has been miraculous. In just a few days her skin looks almost completely normal.
Monday, November 29, 2010
We're splitting the second topic into two parts. The swallow study will be first, the G.I. appointment will be next.
On our last OT appointment in San Diego (yes, we have two OTs - but the Bakersfield OT has graduated her - the SD OT is more for eating) they recommended that Karsie do a swallow study. She just hasn't been eating at all and she spits pretty much everything out that she is given. It was very concerning to the OT that Karsie has been retching after many of her feedings. She thought that Karsie could develop an oral aversion by associating food with the uncomfort of the retch. So we went in.
Good news! Her not swallowing is not mechanical, it's a defense. Michelle and Carlos went in to the study and they had Karsie eat a bunch of barium-dipped food...yummy! Then they took a video X-ray and watched Karsie swallow. Karsie does block the swallow with her tongue at first and is very tentative about letting food get by. But she does swallow. In fact, she swallows more than we thought, it's just hard to see when all we see is the food coming back out. They ruled that she didn't have any problems, so that means that our next job is to create positive associations with the eating. We are continually told, it's not about how much she eats right now, it's just getting her to be happy with food and enjoy the sensations. The amount will come. So, we have been on that journey, and it's actually starting to show progress.
Lately, Karsie has been signing "more" for when she wants food. She absolutely loves putting food into her mouth, and we're noticing that she is swallowing a lot more. We think that has to do with us decreasing her total volume of formula and giving it to her more frequently instead of all at once. She has not retched nearly as much, and she is more willing to eat. We really think that she would do a decent job of eating if she were to be taken off formula and get hungry, but we wouldn't be able to hydrate her yet because she doesn't have the same skill at drinking.
Sunday, November 28, 2010
Well...yes. We have been lazy. Just to get that out of the way.
We actually have a bit of stuff to talk about, but there always seems to be something that keeps us from posting when we sit down to do it. So, as not to overwhelm us, we will split out topics of discussion up. Here are our topics we will cover:
1. Karsie's terrible 2's coming early
2. Karsie's G.I. and swallow study
3. Update on development
Maybe that way we will get the posts done. Sorry.
KARSIE'S TERRIBLE 2'S
So, we have a two year old. Not in age, but in mentality. To be clear, she is still wonderful and she's really not that bad, but she has hit the stage. She loves throwing tantrums now at certain times when she doesn't get her way. They do not include throwing herself on the floor yet, but it does include fussing and stomping her feet while standing up. She also has started having an agenda for what she wants to do, and we all must cater to that agenda. Who ever said that the terrible 2's start at 2?
Monday, November 8, 2010
It's official. October was the weakest month for us as far as posting goes. It is starting to follow a trend of few posts. That probably could be considered a good thing as most of this blog has been specifically for Karsie's medical dealings, so an absence from us usually means some kind of normal.
We'll have to start to think about what will happen to this blog when her stuff is all done - especially if there's a little sibling for Karsie on the way (no...there's no announcement today). Maybe we'll do some sort of duo-blog until Karsie's stuff is done.
Well, enough of the rambling.
Karsie caught a small bug. She's been hacking a bit for the last couple of days. It's a good hack though. Nothing like it was this time last year. She has enough strength to get a good hack in.
Daylight savings was quite the downer. We usually get a good night's rest in. This was our first experience with a kid. No one tells them they're supposed to sleep an extra hour! It's a good thing Karsie is dang cute in the mornings when she wakes up because we weren't feeling so cute when we were woken up.
Karsie has been fighting yeast on her G-Tube site. It's a pain to get rid of once it starts, but we've been managing. Our doctor found us a stoma nurse here in town, so we have regular appointments with her. She gave us some powder to put on Karsie's site. We've been putting it on for a week and it's been doing very well. We're constantly wrestling with her leaking at the site which creates the yeast if it sits on her skin for too long. So the powder is accompanied by many dressing changes throughout the day. We didn't even do that many when she was in the NICU.
Karsie has been RUNNING around everywhere lately. When she learned to walk, she also learned to run. It has been quite the time keeping up with her. At one point we had a few seconds before we had to react to something. Now, we have to glue ourselves to her to make sure she stays out of trouble. Which she does for the most part. For now...
Monday, November 1, 2010
In response to the World Series being done (congrats Harold by the way), we thought we would post this.
From time to time, every 50-60 years or so, an athlete comes around and changes the landscape of competitive sports. It is now time to celebrate the next athlete of the century...and it is our daughter. Once this video ends, you will undoubtedly agree...