Sunday, January 18, 2009

OMG did I cut them off???

Her curls that is. About two weeks ago I decided that it was time to give Ellie's curls their first real trim. The curls were getting tangled all the time and they were getting stuck in the zipper of her backpack too, and that was not fun for any of us. So we gave her a sink bath, washed her hair and then I got started with the cutting. Now her hair doesn't get stuck in her backpack, is much easier to brush and wash and doesn't look as ratty. But the perfect ringlets are GONE!!! I always loved how her hair made perfect Shirley Temple curls that looked like I had spent hours perfecting, when in reality I did nothing. Oh well, hopefully they will come back in the humid weather this summer. Hopefully.

So back to a more serious topic, Ellie. She is still not gaining weight. She is basically stuck at 14 kilos. We think she has gotten taller and we know her shoe size is bigger, but the weight gain is not happening. We are also battling high output from her ostomy. Usually I can pin point the culprit when she has high output, (pork marinated in brown sugar and orange juice, Mac and cheese, too much Popsicle, beef with too much spice) but this time we are at a loss.

After her study she was pooping in her diaper 8-10 times a day . Sounds like normal short gut right? But we did the study because she wasn't pooping! Her ostomy output during this time was fantastic. It was around 300mls a day and her urine production was great too. Then she went back to her normal of pooping 2x a day but only with a suppository. And her output went up to 1000 a day. Not great.

We have been managing her hydration with extra D5 during her naps. Then we have been tracking everything she eats and looking for a reason. She also started oral vitamins right after her study, so we have been looking at those. Now we are mixing them into her milk bag at night so that she gets them over a slower period of time. But we are still seeing high output.

The next thing we are looking at is bacterial overgrowth. We haven't seen this since before her ostomy was created but, it is very common in the short gut world, so we knew it would come back. Her breath stinks and her output has taken on a almost yellow orange color, we think these might be due to bacterial overgrowth.

If we can get her output under control then I'm sure she will start gaining again. I'm ready for her cloths to look like they fit again.

Other than the high output and looking skinny she is doing great. She started gymnastics, ballet and Tap classes last week. Gymnastics are her wild time and she is amazing in ballet class.

We are spending today snowed in and very bummed that we didn't get to go to CT for K8's birthday party. But we did have fun playing in the 10 inches of snow that was supposed to be 1-3 inches. The sight of a snow angel with a enteral back pack impression in the middle is fantastic.

5 comments:

Holly said...

We use Wild Mediterranean Oregano Oil everyday to ward off bacterial overgrowth. It's a natural anti fungal/bacterial. Caleigh hasn't had BO since we started it. As you know it could be a number of things that stopped it, but we are keeping with the oil just in case.

It's always a guessing game with our kids! Can't wait to see the new hair cut.

Angi said...

What kind of liquid vitamins are you using? My son had been doing so well and then we started the liquid vitamins and all poopy H*&l broke loose. Changed vitamins to Source CF and things calmed back down to normal. I know it is so frustrating to figure out what causes the output. Hang in there!

-Angi-

Kate said...

Who needs perfect ringlets? They were nice, but they were getting in the way of her fun. It's a haircut as feminist statement. India Arie has a song called "I Am Not My Hair." It might be the Ellie Brogan theme song for the week. That, and "Keep on Growing." (Remember the long "Grow Ellie Grow" chart?)

K8 from CT said...

So when do we get pictures of the new styled Ellie? :^) You were certainly missed back on Sunday, but I had a lovely time. See you soon I hope!

Mom2Juliana said...

I just wanted to let you know that Ellie is in our prayers. I wish I could offer advice but I can only learn from journey as we travel down the same path. I know it's frustrating to figure out the dumping situation. I am in the middle of one now.

Glad to hear she is enjoying her new classes and can't wait to see her new haircut. Wishing you the best.