Our GI flew in from Arizona!

Today was our first visit with GI Doc since his move to Arizona, where they apparently have enough sun for him to get a tan. He didn't like her micro nutrient labs or her CBC and sent our dietitian on a mission, more tweaking of the formula. She is pretty anemic and low in carnitine, so we are going to get those in IV form to give through her G-tube (yes you can do that. You can even do it with IV benedryl, but it makes Mia super grouchy). We are adding a packet of vitamins to the formula because she's just too low in too many nutrients, like zinc. You can tell around her mouth and her diaper area. She also has the sickness shiners under her eyes, I tried to capture them in the first closeup picture, but the flash really takes the oomph out of it. SO. There is blood in her stools, she is having vomiting episodes, her weight is dropping, no appetite (I'm having to tube more feedings than ever), anemia and poor absorption. Most of us were baffled by this but he had a suggestion that made a lot of sense; her sustaining meds were switched up about two months ago, when several of these symptoms began. The pharmacy had me take her Budesonide out of the mix when GI Doc meant for it to continue with the introduction of the Ketotifen. Not having that budesonide basically triggered an Eos flare so her gut is bleeding and sloughing and is too irritated to absorb nutrients properly.
We started her Budesonide again and were going to give her a five day punch of Prednisolone when I spoke with the pharmacist after noticing that they gave us big white pills. I've been at this long enough to see a big flapping red flag and found that they had lactose in them. Now we have to wait for Monday to roll around before getting the Rx corrected. I'm going to miss this doc when the time comes for either us to leave or him to terminate his contract with Providence. He is just so proactive and intuitive and can scrape you off the ceiling when you've gone batty with worry. We still have our amazing dietitian, and I've already told her that she should just consider moving with us. Next week we visit with the dietitian, endocrinologist and the allergist. Sometimes we feel like we're running a circus!

You can see her mouth getting sores from low zinc, and the sick or "allergic" shiners

She wanted a tunnel, but the mats would only allow a tower

Girl loves her leg warmers. She calls them "wiggle wormers"

Mommy has to do some shameless bragging on the dress