Tuesday, we went to see the GI for a follow up. It was an incredibly quick visit, but we have no issues, so that's fine with me. I mentioned that during her last GI switch, the Dr. at Baystate said she will need a new size GJ button soon. So, the GI said to just mention that to the nurse when I schedule the next replacement. Apparently, Eve will need to be unconscious as they size the stoma. It doesn't sound terribly comfortable, and she guards that area as it is. He then said that he wanted to increase her feeding rate. I raised my eyebrows and said, "Really???" He asked why, and I lifted her shirt and stuck my fingers under her belly flap. Her tummy hangs over enough to cover nearly my entire fingers. I asked him how much weight she put on since the visit in March (they weighed her in kg and I'm not good with metric). He admitted 3 pounds. I told him it had been 3 pounds in the 6 months prior to that visit, too. I asked if that was typical weight gain for a typical 9 year old. He said it was "generous" and agreed that we didn't need to increase her feeding rate for another 6 months, but warned me that it would catch up to us. I understand, but am comfortable waiting until she either enters that range for a typical amount or falls below it before we increase the rate.
Next up is a visit to the neuro next month. I always look forward to this visit. He is very helpful and manages several of her meds. Added to the list of things to talk about with him is another possible seizure at school yesterday. The last one was in February, I think. She was fine when she got home. Just a quick pain episode at the end of her shower, but when I got her on the couch and was going to grab the morphine, she relaxed.
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