I'm all caught up reading last month's and this month's thread, but I'm kind of sad, so I'm just going to update on stuff yesterday.
The good news is that Z doesn't seem to have a thyroid problem. I'm pretty pissed, though, because I think dr.-dr. miscommunication cost us a couple of weeks. One of the hormones *is* elevated, but ultimately, it doesn't matter, because the most important one is within an acceptable range. And apparently, the endocrinologist *told* our ped this, but our ped is "very stubborn" (endo's words), so he said he'd see us anyway, at the ped's request. (Meanwhile, 11 days go by, and we're back to square one.) Sigh. The endo *did* agree that Z's weight curve doesn't look good (he's closing in on the 5th %ile, and it looks like he's starting to slip in length now, too), but he thinks it's a feeding thing or a neurological thing (he wanted more details about the hyptonia, but unfortunately, I don't really have them at this point). So we're supposed to see a dr. in the growth/nutrition dept (which is supposed to be good with complicated cases like ours). We'll find out on Monday when we can get in *there*, but it will be the end of April at the earliest. (Sigh.) We're also going to go ahead and get something scheduled with neurology, too, because apparently their wait time is generally super long, and if we get some answers/help elsewhere, we can cancel. I *seriously* doubt that neurology is going to give us any answers (and I seriously doubt there is a neurological problem), but at this point, I'm all for being thorough and ruling things out. Sigh.
I talked a bit with the growth/nutrition dr. on the phone yesterday (the endo did a naughty thing and gave me her direct office phone #--if I were her, I'd kick his hiney for that). She was actually kind of helpful for dealing with this treading water phase. She wanted a copy of his blood tests to make sure he's not low on zinc or iron, and she told us she wants him on a liquid vitamin with enough zinc and iron. Turns out the vitamin she wants him on (there's only 1 out there which has enough of both) is the one we're already giving T (so it's in the fridge--we'd have given it to Z, but there's not a recommended dosage for babies on the bottle). And after talking with her, we're trying to work with our ped and our LC to start getting Z extra calories. We were going to try adding breast milk fortifier (they use it with premies) to pumped milk in a SNS, but there's no BMF which is dairy free, so I had to (put a bag over my head) and buy a can of isomil. Z wanted no part of it (don't know whether it was the tube, the nasty taste, or that he was overdue for a nap). We'll keep trying, but I'm not very hopeful at this point.
He's making good progress on the gross motor stuff... I think he'll be crawling within a couple of weeks (cross your fingers). The mouth stuff is really hard. We're working, gently, gently, gently, and he's very resistant. We do see tiny, incremental progress, but oh, I wish he could just get more calories.
I'm ready to start looking into alternative stuff. The LC gave me a lead, and I'm going to call my accupuncturist when I feel a little more "together". (I'm afraid I'll just start sobbing on the phone, and I just don't want to do that with a stranger.) I also have a mama friend or two to ask about this.
Anyway, I'm just so sad and worried. I wouldn't be quite so worried about his weight and eating if it weren't for the dramatic drop in his weight %iles, the slowing in his length, and the developmental concerns. But there it is.
The good news is that Z doesn't seem to have a thyroid problem. I'm pretty pissed, though, because I think dr.-dr. miscommunication cost us a couple of weeks. One of the hormones *is* elevated, but ultimately, it doesn't matter, because the most important one is within an acceptable range. And apparently, the endocrinologist *told* our ped this, but our ped is "very stubborn" (endo's words), so he said he'd see us anyway, at the ped's request. (Meanwhile, 11 days go by, and we're back to square one.) Sigh. The endo *did* agree that Z's weight curve doesn't look good (he's closing in on the 5th %ile, and it looks like he's starting to slip in length now, too), but he thinks it's a feeding thing or a neurological thing (he wanted more details about the hyptonia, but unfortunately, I don't really have them at this point). So we're supposed to see a dr. in the growth/nutrition dept (which is supposed to be good with complicated cases like ours). We'll find out on Monday when we can get in *there*, but it will be the end of April at the earliest. (Sigh.) We're also going to go ahead and get something scheduled with neurology, too, because apparently their wait time is generally super long, and if we get some answers/help elsewhere, we can cancel. I *seriously* doubt that neurology is going to give us any answers (and I seriously doubt there is a neurological problem), but at this point, I'm all for being thorough and ruling things out. Sigh.
I talked a bit with the growth/nutrition dr. on the phone yesterday (the endo did a naughty thing and gave me her direct office phone #--if I were her, I'd kick his hiney for that). She was actually kind of helpful for dealing with this treading water phase. She wanted a copy of his blood tests to make sure he's not low on zinc or iron, and she told us she wants him on a liquid vitamin with enough zinc and iron. Turns out the vitamin she wants him on (there's only 1 out there which has enough of both) is the one we're already giving T (so it's in the fridge--we'd have given it to Z, but there's not a recommended dosage for babies on the bottle). And after talking with her, we're trying to work with our ped and our LC to start getting Z extra calories. We were going to try adding breast milk fortifier (they use it with premies) to pumped milk in a SNS, but there's no BMF which is dairy free, so I had to (put a bag over my head) and buy a can of isomil. Z wanted no part of it (don't know whether it was the tube, the nasty taste, or that he was overdue for a nap). We'll keep trying, but I'm not very hopeful at this point.
He's making good progress on the gross motor stuff... I think he'll be crawling within a couple of weeks (cross your fingers). The mouth stuff is really hard. We're working, gently, gently, gently, and he's very resistant. We do see tiny, incremental progress, but oh, I wish he could just get more calories.
I'm ready to start looking into alternative stuff. The LC gave me a lead, and I'm going to call my accupuncturist when I feel a little more "together". (I'm afraid I'll just start sobbing on the phone, and I just don't want to do that with a stranger.) I also have a mama friend or two to ask about this.
Anyway, I'm just so sad and worried. I wouldn't be quite so worried about his weight and eating if it weren't for the dramatic drop in his weight %iles, the slowing in his length, and the developmental concerns. But there it is.
: necessary mama! My nephew who had lots of feeding issues (tube fed for a while) was glugging down coffee haagen daz/pediasure shakes til he was 2 for the extra calories. We're having good days and bad days around here and lots of teeth on the way isn't helping. Pursuing alternative therapies in the meantime also sounds promising. *deep breaths* You're doing all the right things and hopefully more helpful answers aren't too far away.
You guys, he ate more in one sitting than he's eaten in the past 4 1/2 months. I guess it was the mix of spicy (remember, that's supposed to be good because it's more stimulating), plus fairly easy to work in his mouth, and he did really well, because obviously he swallowed it (I have to admit that I was doing face/mouth stim exercises for ~15 min before dh got home, too). Not the healthiest food in the world, and I imagine not the healthiest fats, but I DON'T CARE. If anyone "should" be eating it, I guess it's a baby who needs to gain weight. I'm assuming that this means we'll be going back tomorrow, and then thinking about coming up with our own homemade but still palatable/interesting version. (I'd been meaning to try hummus on him, too, and this is encouraging to me.) 
Well, I did have some quiet time to myself.
And more 
I am so not ready for a toddler! 
. Yikes, with a 10-month old!
Scary stuff. I wish I could hold him forever, keep him from harm. But we will do the best we can, right? 
endocrinologist should have noticed that... The stupid dr. said that they don't start worrying until they stop growing in length. Well worry, mr. smarty pants. He stopped growing. We have an appt tomorrow for him in the Growth and Nutrition Dept at Children's. I really, really hope they have some answers, because I'm starting to get pretty scared. Saturday and the bean burrito was great, but he's totally lost interest in it since. And even though the gross motor therapy is going well, I feel pretty frustrated with the mouth stuff... it's very hit or miss, not as obviously well-fitting to help him. It's really hard to do it without making him cry, and making him cry about oral stuff seems like the wrong thing to do (like we could give him an oral aversion), so we have to be very, very creative, and it takes a huge amount of energy. We also have the requisite appt with a neurologist scheduled for the 25th. I seriously doubt they'll find anything with *that*, but we have to keep crossing things off.
when she figures out that I am going potty without her :LOL.
He does bathtime too, which is nice, although I had to outright tell him that I wanted him to take significant role in bedtime and suggested bath - "Oh, um, ok. I guess I could do that... but will you help?" he said - 
: But he does it on his own and its all good.
: )
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