ND Chic reminded me that I haven't done any updates on Pickle's health in a while, so I figured I'd do a general kid update, since that's where all my time is going.
Pickle is amazing. She still has her feeding tube, and is basically still dependent on it - but we have been doing weekly feeding therapy since January and are seeing huge strides. In recent weeks, we've managed to eliminate a quarter of what she gets by tube, as she's made gains with oral eating. She's also been weaned off all of her reflux meds, and is able to take by mouth medications that we used to have to give by tube (liquid vitamins and the odd ibuprofen/acetaminophen dose).
It's hard to guess whether she's close to actually losing the tube. She has mastered purees, but still stores a lot of food in her cheek and doesn't swallow it (this is common with toddlers, but typical kids still swallow some food because food cures hunger, and that's a connection Pickle's body has not yet made). Her feeding therapist works on desensitizing Pickle's lips, cheeks, and tongue and especially her gag reflex. They try all kinds of weird combinations of foods to challenge her with textures (lately it's been ritz cracker crumbs mixed in yogurt, blech).
The fascinating part to me is that Pickle and Baby Bear were briefly at the exact same stage with eating - but Baby Bear has now surpassed his big sister. If you've ever started an infant on solids, you know about the tongue thrust reflex and how their gag reflex is super close to the front of their tongue but gradually moves back as they put toys and food in their mouths. Because his instincts were not interrupted, Baby Bear managed to reduce his own gag reflex, learned to swallow mushed/chewed food instead of just liquid, is now capable of eating most table foods, and is working on his pincer grasp. Because Pickle's instincts told her that eating hurt, she still needs our help to reduce that gag reflex and learn to swallow anything that's not totally smooth.
At any rate, the therapy is definitely helping (and is covered by insurance, thankfully) so we are working on challenging Pickle more and more with how much she eats by mouth. In a way I'm in no rush to lose the tube, because she is getting awesome nutrition through it (I still make all her food in our blender, or sometimes use a commercial product called Real Food Blends - she hasn't had formula in over 18 months). Keeping her focused on eating by mouth is a challenge, because she gets bored with it way before she's eaten enough calories to sustain her, so it's nice to not have to worry about it.
At the same time, I think that for us losing the tube will be a lot like potty training: she's not going to do it until I force the issue. For potty training, I picked a day, warned her for about a week, and then threw all her remaining diapers away (into a box for Baby Bear to use when he grows into them). We had several messy days, but there was no going back to diapers for her, and so she has learned to use the potty, even at night. With the tube, I'll have to craft a plan with her medical team and then just...stop feeding her and let her body figure out how to regulate itself. This is much higher stakes than potty training, so we'll have to have a limit for weight loss and dehydration and be willing to step in if necessary, but I sort of see it needing to be an all-or-nothing thing. It's down the road, but I'm not sure how far.
In other news, she has handled several colds with no problem (sometimes we do rescue breathing medications, but we haven't had to actually go in to the pediatrician), she is meeting or exceeding most developmental goals for her actual age, and she's obsessed with construction equipment. Baby Bear is a good-sized almost-9-month-old, sleeps mostly through the night, has a bunch of teeth, and is army-crawling around the house. They are lovely siblings to each other and drive me up the wall every day.