Made of Gray

How 2010 Started

Holly D Gray4 Comments

The first few days of the new year have been relaxed and great so far. We moved Caleigh out of her play room and put all her many things in the dining room for the up coming renovation. I decided that Caleigh's play room is where the action will be so we are starting there. It's the most visited room in our house and we spend hours in there. I like to call it a "play room" instead of a "therapy room." Who would want to play in a therapy room anyways?

I've removed all the wallpaper, we've primed the walls and picked out the paint. Here's a little teaser for you.....
I'll post the full makeover when we are all done.

I haven't updated on Caleigh's medical stuff in awhile so here it goes...

I think the last time I wrote about Caleigh's belly we had already done two rounds of antibiotics for bacterial overgrowth with no results. We decided it wasn't bacterial overgrowth. Her colitis was acting up and we started the drug Apriso. Well, about a week into the twice a day Apriso things got worse. Bad, even. Caleigh's diarrhea was out of control and she was passing the medicine as soon as it was going in. I talked with our GI and he wanted to stop the med and see how she did. At the same time {which is a big no no to do 2 things at once} we were weaning Caleigh's reflux med and things weren't going well with that either. Her retching and reflux symptoms were terrible. So we went back to half strength and things got a little better.

About 4 days after stopping the Apriso we started giving Caleigh Slippery Elm Bark. Basically this is the natural version of the Apriso. It coats as it goes down. We give it 3 hours after her evening meds and again in the morning. You have to give it by itself because it can block the absorption of other meds due to the coating.

I've known about this stuff for about a year, but never jumped on it. I'm not sure why since the Oreganol Oil worked so well. Natural is the way to go. There are several special needs parents that give it to their kids for reflux and a couple of short gut parents that do the same. I did some more reading and people with Crohns, Colitis and IBS love it and have amazing results.

So we started the Slippery Elm about 2 weeks ago and things are really looking up. Caleigh only stools once maybe twice a day and there is consistency not just liquid. Her belly is soft and smaller. Her constant coughing has slowed down. It's not all the way gone, but better. Her retching is down to 3-4 times a day. I had lost count previously, but it was way more than that. I'm not sure if the colitis bleeding has stopped. We will have to wait for a stool sample to check for blood. Some of the information I read talked about curing crohns and colitis bleeding. I'm hoping this is the case.

As far as feeding isn't. We are taking a break from feeding and feeding therapy. We'll still be going to Speech for speech therapy but not trying any food. I still offer Caleigh her sippy cup with water in it and sometimes she likes it and other times she doesn't. I also offer smells of everything I can. I'm sad and relieved at the same time. It's a weird feeling. Temporarily giving up and not fighting with her anymore. Until we get her intestines feeling better it's useless. I can see why she would hate eating right now.

Caleigh is currently at 75 ml an hour for 16 hours a day. 1200 ml of Elecare a day which is about 40.5 ounces.

The next two weeks are full of doctor's appointments. Nephrology, Neurology, Endocrinology, GI, Pulmonology just to name a few. Things will be busy as we get back into our normal therapy schedule too. It will be fun getting Caleigh all dressed up in her new outfits for all her appointments.

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