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.