Friday was our GI appointment, bringing new news. We bumped up our appointment because we thought Tyler was possibly having allergic reactions to his formula. He wakes up at night screaming in pain, many times holding his Mic-key button site. During naps he'll cry out while sleeping as if he's uncomfortable. And we've noticed that sometimes during his night time gavages, his eyes will get red and itchy (he rubs them). The ONLY thing going into him right now is Neocate (formula), Nexium (reflux medication), probiotics (VSL brand), and Mirolax (we know what that's for, right?). When we finally saw our GI, we were pleased that she was happy to give us a bunch of samples of another elemental formula, which we've been giving him. So far, we're not convinced it's better or worse than the Neocate. We'll have to wait and see.
BUT the interesting news is that when discussing Tyler's non-eating habit, she agreed that further testing of Tyler's oral track was needed. She ordered an endoscopy with biopsy to determine if there is a physical reason Tyler can't eat. The procedure is out patient, but he will have to be put under for obvious reasons. The appointment is scheduled for October 30th. We're hoping that if something unusual is found, at least we would know what we were working with!
Yesterday Tyler and I went to UCD for swallow study evaluation. The Speech Therapist concluded that Tyler wouldn't be able to complete a swallow study because NOTHING is going down his throat right now. She said they have a hard enough time trying to get oral babies to drink Barium and she didn't see how we could do it and if the results would help us right now. We really need to wait for the endoscopy. The positive thing about our appointment and is that we've decided that both boys should come see the therapist for feeding therapy. We've been trying for months to get our current "rock star" therapist on board to see the boys, but insurance company "issues" are making it impossible right now. It's heart breaking, but I have to get some guidance and assistance or we'll NEVER make progress in their eating. So...for what I hope to be a temporary amount of time, I'll be driving the Bubbies to UCD weekly (or possible every other week when the weather gets icky). What to do but make do!
Below are some pics of the boys in their brown bear snuggly outfits, fitting them a little too well! They've almost outgrown them and winter hasn't started yet. There is also some funny video of them before we left for the appointment. It shows Tyler at his prime - Mr. "chatty, walky, bug brother, don't listen to mommy" brown bear baby! Parker has some cute smiley moments in here too! Enjoy!