Well, OT just left.
For once she actually got to see Robbie's (not) eating in progress.
At 1:15, he acted like he was STARVING. He'd barely eaten at his 11:00 feeding, so that was entirely likely.
He was wide awake, so I knew he wouldn't eat, but I hoped.
So I gave him a bottle. He sucked on it like a mad man for about a minute and a half. Then he stopped.
He'd taken 10cc. (About 1/3 of an ounce)
That was about the time the OT showed up. I was still sitting with the bottle in the mouth. He gummed at it. And gummed at it. And gummed at it.
She asked if she could try and I passed him over.
For an hour she stimulated his mouth, tried different positions, played with him. She eventually took a break and did his stretches and tried again. He took another 10cc in that time.
He was finally getting drowsy.
I told her that he'd eat now and took over. Sure enough, he sucked down 60 cc (2 oz) in about 10 minutes.)
That's the story of my life. Try to wear him out, try to feed him. Emphasis on TRY.
But at least she got to really see what it's like.
So her theory is now this:
He's SO not oral-averted that he's actually the opposite. She said he's a bottomless pit of oral stimulation need. All he wants is oral stim. So much that all it takes is something in his mouth to make him happy. He can ignore hunger (eating only enough to turn off the hunger) as long as his need for oral stimulus is met.
Now, I'm not 100% sure this isn't all a bunch of mumbo jumbo, but it does make sense. He'll chew/suck on anything- his hands, toys, pacis, my hands- you get the idea. But he won't EAT.
Anyway, she did some vibration stuff on his cheeks. He LOVED that. He just laughed and laughed. So I guess if nothing else, he's having fun. The idea is that we need to try to "fill up" his oral need and then he can focus on something else.
Of course, I also talked to the GI's office twice in the last 2 days. It started as me calling to ask them to call in the script for the Prevacid solutabs (his reflux pain is IMMENSELY improved now- and no side effects from the lactose.) and ended up with me telling them he's still not eating.
It would be funny if it weren't so serious but the GI's office recommended and OT second opinion and the OT recommended a GI second opinion. No one really knows anything.
I'm not sure if I believe anyone can do anything at this point.
At this point my plan is to give the new drugs and new therapies until the end of next week to work. Maybe once he feels okay long enough, he'll have an appetite enough to want to eat. And we'll fill his oral stim "bucket" as best we can and see what happens.
If nothing gets better, I'm going for a GI 2nd opinion. I would like to see about something to stimulate his appetite and see if it helps.
If it doesn't, I'm not sure I have much choice about the G tube. I broke down into tears talking to the OT about it today.
I feel so emotional about it. It feels so drastic. I feel so guilty that I let them put one in in the first place, then guilty that I let them take it out and now it turns out he may need another.
I wonder how it will affect him long term. Will it make his oral issues worse? Will it make his reflux worse? Will he be able to run and jump and play like other kids? Will he always have stomach problems? And of course, there are the risks of surgery in general.
But I worry about not doing it as well. He's just not growing. While being small isn't the worst thing in the world, babies should grow. I worry about his health and his developement.
I broke out the exersaucer yesterday and he really likes it. But his legs are too short for his feet to reach even on the lowest setting and his arms are too short to reach any of the toys.
Right now he's doing well in every other area except this. But it can't be long before other areas start to suffer.
I just hate all of this and want him to get better.
For now, we just keep slugging along.
Tuesday, January 13, 2009
Well, OT just left.
Posted by David, Trish and Robbie Cox at 4:54 PM