Wednesday, September 22, 2010

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.

2 comments:

  1. Let's hear it for HAPPY! Glad she is doing well. Grateful the Doctors & nurses are able to help. It was sooooooo fun to see Karsie at church. Makes me long for my little Grandaughter. But Christmas will be here before we know it. What a blessing you all are.
    Love, Cynthia

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  2. So glad to hear that Karsie is getting back on track. Amazing what a little Prilosec can do!

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