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 food...at 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.

Karsie's First Steps

We saw this coming, so we whipped out a camera and got her taking her first two steps!!! Good job Karsie!

New Dressing Supplies

Hello? Yes, We're Here!

It's good to be back, but it's also good to have our Mac back. We have slacked a little on the blog lately, but our extended "slack" this time was due to the computer needing to be worked on by the Mac doctors.

We'll start from a couple weeks ago and end today, which had Karsie going to G.I. Karsie and company went to Disneyland on USC game day. Hope that doesn't offend anyone. Especially as Karsie looks darn cute in USC clothes. She had a blast! Especially where we found places she could crawl and walk.
Since a while ago, Karsie has stopped eating pretty much altogether. She seems to have regressed to where she puts food into her mouth and then thrusts it out with her tongue. So we made an appointment for the food clinic in San Diego at the same time as the G.I. appointment.
Michelle and Karsie went down to San Diego with Great Grandma Koch and had to leave Kevin at home. There was lots of fun time with friends, family, and other special people who love Karsie.
So the appointments: The food clinic was awesome actually. The therapist seemed to know exactly where Karsie was developmentally - so she has seen this before. Basically, it seems that Karsie is keeping the food centralized in her mouth and then doesn't really want to swallow. We're all pretty much in agreement that when she had to go on antibiotics for her G-Tube and being off of Prilosec may have thrown her back to where she doesn't want to swallow. However, she has the capability. Otherwise she'd be drooling. The goal now is to "wake up" Karsie's side mouth sensors since she's only keeping the food in the center. So we got a ton of toys (all given to us by OT) to have Karsie play with/chew on in order to wake up those sensors and get her to move food around in her mouth. She either didn't ever move it around, or she unlearned it during the time she was not eating (including now) that started with the antibiotics and not being on Prilosec.
G.I. - Her G.I. appointment was today. Our goal was to go back on Prilosec (to keep her tummy feeling better, to keep the heightened acid off her skin when her site leaks, and she's been gagging more lately). Karsie saw a stoma nurse (looks at her site), the G.I. nurse, and the dietician. The stoma nurse put her on a whole new dressing regiment that we're very optimistic about. Karsie has been fairly miserable with her itchy tube site, and when the nurse put on the "stuff" she almost immediately felt better. We put on the cream, put on a powder that helps with the itching and dries it out, put on a water barrier that's a spray, and then put on a foam dressing, which is now taped down by nicer tape. We used to have mean tape that would make Karsie upset when it came off. She has not dug at her site hardly at all since we put it on. Karsie was put back on Prilosec, which we are very happy about. Also, we have increased her feeding by 60 mL a day. She also will be given about 30 mL of water between each feeding to keep her hydrated. She has been having less wet diapers lately.

Finally, Karsie did some good growing. She's now at 18 lbs. 11 oz. At this point in a toddler's growth, they grown on average of 9 grams per day. Karsie grew 17 per day since her last checkup. So she's doing some great catch up growth. Her length is almost 29 inches, which was also growth. The dietician was very happy. So were we.

Two for Tuesday (or Monday)

Bath Time! How obvious is it that she kind of enjoys baths?

Uncle Todd's hair needs to be pet. It's just a must.

**Disclaimer... we have had dogs for years... so long before Karsie came along, we adopted a "close the door" policy in relation to non-essential rooms. So, please rest assured that Karsie isn't crawling into bathrooms unless well supervised.

Karsie's Walker

A Clarification

The last post may have been confusing, so here's a clarification. We got an appointment WITH plastic surgery...meaning the practice of. We did not get an appointment for the actual surgery, just a consult. Hopefully we will have a date for the surgery after our appointment in October.

Also, Aunt Mandy has been heard from and is alive and well. She wasn't actually home when the quake hit as she was on a little vacation. Karsie was able to see and "chat" with her a bit the next day. We even got to witness an aftershock live.

Quick Hits from the Week (9-4)

-Karsie's site looks much better and she is feeling better. Although today she is digging at it a bit more. We think it's just from a pressure sore that opened up today. We're keeping an eye on it.

- Karsie's feeding is not going well at all. She has actually stopped trying all that much, and when she does try she thrusts her tongue out and it pushes out the food. It's like she's backtracked a bit. We are hoping this is just a phase, but it may be a sign that we need to start going back to therapy for her.

- Karsie's Aunt Mandy (Kevin's sister) is in Christchurch, New Zealand and is okay for the time being. Yesterday's earthquake was pretty scary, and we're still not too sure how it is there, but she's alive and we are all very happy about that. We're still praying hard for running water and anything else that is needed there. We'll put up an update when we hear more from her.

-We got an appointment for plastic surgery. It's in late October. We hope by then she will have grown enough to be ready for her tissue expanders. It's bitter sweet for us because we want her young enough so she doesn't remember much of it all, but it's surgery and terrifying for us.