Wednesday, February 04, 2009

cha cha cha cha chaaaaaa Cha!

So we are better? We went to clinic last week and she weighed in at 14.2 kilos. That is down from 14.28 two months before. Needless to say they were not ecstatic. They gave us a month to get her gaining weight again. They also agreed that the stinky high output is probably due to bacterial overgrowth. So we did a week of the antibiotic Flagyl. We are now taking a week off and will do two more rounds of one week on, one week off.

We are also looking into a different vitamin, because we were able to tie a few of the high out put days directly to her vitamin. So we are looking into tablets or chewables.

I hate that we had to use Flagyl, I hate messing with the flora of her bowels. But it had to be done. So now that we messing with it, we are going to look at and start pre and probiotics. Thank you everyone that sent info about what you use. It gave us some good info to start with. Why re-invent the wheel, right?

Ellie is just like she always is.... a wild woman.
We on the other had are getting a bit tired of the "short gut cha-cha" and are ready to stop dancing for awhile. It seems like we have a good day followed by a bad day, and repeat. But amazingly today is day our first of 2 good days in a row. So we are hopeful. Good days usually mean weight gain and that is a good thing.

Other than the output thing we are all doing well. Ellie loves ballet/tap and Gynastics are fun and scary with the wild woman. As you saw in the previous post, Ellie is into story telling. She will tell us whole scenes from Shrek and almost all of Green Eggs and Ham.
Hey Max! Try this one!
We had a bit of an eye opener today. Ellie started telling me about the "special doctor". I asked for clarification as to who and what the special doctor was. She explained that at the "special doctor" she gets a big white bed that goes up and down, that there is a big TV on the wall and there is also a brown table that goes over the bed that we put her train set on. Yeah, that would be the hosptial that she is talking about.

After I picked my jaw up off the floor I asked her if she liked the "special doctor", and she replied, "Yes it is very fun!" That took a little of the sting out of the fact that our "she won't remember this" time is over.

7 comments:

Anonymous said...

Sorry to hear that she's gone down in weight...so has Collin. She looks beautiful! Our prayers are with her and your family!

Erin
(Collin's mommy)

Anonymous said...

Collin was having problems with bacterial overgrowth so we've started giving him Cultural 2x a day...so far so good. Talk to your dr's maybe they'll think it will help? Good luck

Erin

Anonymous said...

Oh! I forgot to add, they first treated the bacterial overgrowth with flag (3xday for 14days) then started him on the Cultural.

eirn

Yuko, Randy, Max, and Kai said...

I'm afraid to show Max that one! Hugs to your gorgeous girl.

Anonymous said...

I hope you get the overgrowth under control soon! As usual, it seems like you're doing all of the right things. I think it's wonderful how on top of things you are with Ellie. I work at a camp for kids with special needs, and I wish all of the parents could be as knowledgeable as you two are! I'm also a patient of the GI department at Children's, and I might have to have the manometry testing done that Ellie had. Did you get her results yet? Perhaps you posted about it and I missed it? Just curious!

Anonymous said...

Okay, I got persuaded to show Max the photo. He immediately ran over to his trampoline and put his head down and his butt in the air. He wants to know what Ellie does after that.

Warren said...

cha cha cha... reminds me of Phuel Dock Phil's warnings, "You don' wanna go out to Looe, man." The Veeper and I think of you two all the time, hope to see you sooner than later. Lincoln has much to learn from Ellie - do keep up the updates.