grrlTravels

honestly, I am completely at a loss

Took Z. to feeding therapy yesterday. I have made an uneasy peace with it. I hate it (it makes me feel like an unfit parent instantly) but I know how important it is. We have gotten in a groove with feeding therapy. A good groove.

So imagine my surprise yesterday when the therapist informed me that Z. is almost finished. With her feeding therapy. Even though she doesn't yet eat much more than yogurt and even though she still has the feeding tube. For no medical reason except for the fact that she will not consume enough calories to keep herself alive.

She has met all of her stated goals. This is true. The goals were things like "accept intra oral stimulation with minimal aversion when provided with maximum cues with 80% accuracy"* and "consume small trials of dissolvable solids 3 times a session when given minimal cues for 5 consecutive sessions to facilitate age-appropriate feeding skills".** She has certainly done those things.

She doesn't know how to chew, though. And when I say that I actually mean that she doesn't understand the concept of chewing. At all. That seems like a fairly important life skill to me. She doesn't self feed at all either. Ever. Most three-year-olds self feed, and even at her developmental age of...hmmm...let's go with 1 1/2 most children are self feeding. Another life skill that seems kind of critical.

The therapist tells me she isn't ready to chew, that she is showing no interest in chewing. The therapist tells me this is as far as she is ready to go right now, that she might need some additional therapy in the future to help her chew.

I don't cry until I get into the car and call K. on the way home. I don't even know why I am crying this time. I suppose it is because I thought the feeding therapy, hard as it is, would bring some answers, some relief from the constant worry and the grueling overnight feeds*** and the questions still lingering. I am faced again with my misconceptions.

No one is going to fix those things for us. No one. No one is going to tell us definitively how to get her to eat. No one is going to figure out the vomiting (which she did on vacation and which I am convinced is related to food allergies, although of course I could be wrong). No one is going to put all of the pieces of the puzzle of Z. together for us. That is something we are going to solve ourselves.

We are going with it. We will finish out however many sessions they will offer us and we will stop feeding therapy at the rehabilitation center. We will go to China and meet HSM and settle in for the winter and think about our next step. I think our next step will to be to travel to visit with someone who has some new ideas about Z., to consult with a specialist we have yet to contact or even locate. The timing is tricky with HSM just coming home so we will need to form a plan after we see how he is adjusting. We will go back down to one therapy session per week for a bit (yay me!) and wait it out.

Wait it out. That is still the plan with Z. You might think I would know that by now.

You would be wrong.

*I understand this to mean Z. lets them put the chewy tube or the nuk brush just into her mouth and swish it around a bit.
**I understand this to mean that she eats crumbs of graham crackers mixed with applesauce.
***They are grueling for us, not her. Getting up at 4:30 or 5:30 am every day to turn off the pump, having interrupted sleep every single night of the year, it gets to you after a while. There is no break from the pump. It is always there, every night, pumping away, and then beeping with its annoying little beep.