Friday, December 24, 2010

Feeding Therapy

Last night at dinner she refused almost every single bite.  It is a true battle.  And I don't want to fight her anymore!  She seems to swallow comfortably.  She's not sick, so I don't think her throat hurts or anything like that.  She refuses all food offered equally, so it's not a taste thing.  So, it's a control thing.  She gets no reward from eating orally, and she's probably tired of being forced to do a whole bunch of things she doesn't want to do.  So much of me can't blame her.

But I want her to eat!!!  I want her to gain weight.  I want her to be as "healthy" as she can be.

We had feeding therapy today.  We tried something new.  I left the room and watched the session from the viewing room.  That was weird.  But neat at the same time.  There is a camera in the room and in another room down the hall there are all these tvs and phones.  I can hear and see what's going on during the session.  And if I want to talk to the therapist, I just pick up the phone and she can hear me.

Harlie definitely refused some bites.  But she didn't push the spoon away like she does with us at home.  Allison just waited her out and sat there with the spoon for minutes at a time, until Harlie realized that nothing was going to happen until she took the bite.

At one point, I had to go in to suction her.  Feeding was going pretty well prior to that.  And as soon as I entered the room, she went back to refusing the bites.  After I left, she went back to eating.

Another thing - at home we have to suction A LOT during feedings.  Most of my SN moms would fear that means aspiration.  But, I know it is completely behavioral.  She makes herself cough to stall the feeding.  We have to put down the spoon, turn the suction machine on, suction, turn the machine off and then pick up the spoon again.  A week or so ago I started pausing the TV every time she coughed or needed suctioning or refused a bite.  Watching a movie/show like this is agony!  Not that I'm watching, of course, but I don't see how she could possibly enjoy the show like that!

Well, during this session she hardly coughed at all.  And I only suctioned once, and it wasn't even necessary, really.  UGH!  That girl KILLS me!!!

After this session, it is pretty clear that my presence changes her behavior - and NOT for the good.  And, I gotta be honest here - that hurts.  And as much as I would love to make myself disappear for every feeding, that just isn't going to happen.

So, we trudge forward.  She is completely capable - in every way - of eating orally.  We have to let her know that she is not getting control of this.

So...

No more discussing her feeding or her behavior in front of her.
If we have a hard day in battle, and I don't feel I have the patience for oral feeding, then I tube her that night.
We wait.  We wait her out for her bites.  Please God grant us patience for this momentous task.
We go back to smooth purees to take texture preference out of the equation.

Oh, the joys of special needs.

On a positive note, we weighed her today to see if all the calorie boosting we've been doing has had any impact.  And it looks like it has!  She gained a little more than a pound since December 1st.  So, that's a relief.

And I had lunch with my friend, Heather.  That was much needed girl time.  As usual, we had a great time with lots of laughs.  Thanks, Heather!

Tomorrow is Christmas Eve.  And with any luck we can enjoy most of the day.  Not sure how feeding her will go.  Grandma and Pap Pap are coming tomorrow.  We are so looking forward to having them here to celebrate Christmas with us!

Please wish us luck with this feeding thing.

Thanks!
~Christy

4 comments:

Anonymous said...

She is a tough little cookie is so many ways. But paitence is a virtue and I am sure with that you will succeed. I pray for you all every day. Grandma and Pap Pap will take some of the strain away I am sure. Have a Blessed Christmas and a very Happy New Year. Love Ron and Sue

Jennifer and Elizabeth said...

I wish you all the luck and please remember that you can always contact me on facebook or by e-mail tigeress1026@hotmail.com I do understand and am always here if you need someone to vent to or with. ((((hugs)))))

Susan said...

Ahh! There is nothing worse than power struggles over food. Well there are worse things, but you know what I mean. It's one of the few things kids are in control of. And the therapist isn't as emotionally invested in getting Harlie to eat and she knows that. Hopefully you can let it go for a few days and get back on track after the holiday. I still think she's doing great considering how long she was tube fed!

B-Mama said...

She is so smart and has figured out how to push her mama's buttons! Kids are so good at that!! What a stinker!

Can you act like you don't care (even though you're dying inside!) Can you make her sit there until she eats it? Can she possibly start working on feeding herself?? These thoughts might be completely out of the question--just ideas to put out there! Hugs and hope things start looking up! You are an awesome mom.