Thursday, July 28, 2011

Day 36 - Still a Mystery Child

Allie had feeding therapy today at the clinic and she ate pretty well. She ate 3/4th of a corn dog and 1 go-gurt. It wasn't enough calories for a full meal but it was calories consumed!  Our regular therapist is back from vacation so her and I had a good talk today.

Ms. Anna (Allie's feeding therapist) has been a feeding therapist for many years (actually Anna is ready to retire).  In all of her years as being a therapist, she has never helped another child like Allie.  Most children with feeding issues have the inability to eat, oral aversions or other issues, but she has not encountered another child like Allie.  Allie has every ability to eat (safely) but simply refuses food after a couple bites.

Ms. Anna has been helping Allie for several months and she does not think that Allie's eating issues are behavioral.  She has seen Allie willing and able to sit at the table and consume her meal.  Ms. Anna feels that if a child has behavioral issues with eating, they will NEVER come to the able to eat and willingly eat.  Allie will sit and eat at the table at therapy about 70% of the time.  So, Ms. Anna said if it's behavioral, Allie wouldn't be complying so often at therapy.  30% of the time at therapy, Allie will take 2-3 bites and declare she's done eating.  One Allie makes up her mind she's done eating, you can almost bet you won't get her to eat anymore. 

Allie has no oral aversions, she will try everything and anything.  She can handle all textures of foods with the exception of very chewy meats.  Since Allie's behavior and energy levels have not fluctuated with our tube weaning attempt, Ms. Ann is thinking the same as me - Allie doesn't feel the "hunger sensation".  Ms. Anna seems to think that going 1 month without adequate food would have triggered Allie's hunger by now - however, nobody knows for sure of course.  Ms. Anna is writing up a short progress report and sending it to Allie's doctors so they all fully understand where she is at with eating orally.  She wants to make it clear to them that Allie's oral intake is sporadic, there is no rhyme or reason to it at all.  Some days she eats a little bit and other days she eats next to nothing.

Our weight check for this week was cancelled so it's been re-scheduled for next Wednesday.  Allie's GI doctor wanted to give her new appetite enhancer medication time to kick in before our next weight check.  So, after that weight check, I will be consulting with Dr. Brown and see what his thoughts are.  I have now increased Allie's liquid intake with her tube.  I'm getting nervous about dehydration since Allie is consuming less and less liquid.  Yesterday when I was giving her a quick bolus feed with water, she was telling me she wanted food with it.  Not sure if she was joking or just hoping we go back to tube feeds shortly.

So, our roller coaster continues but I must say that Allie is doing amazing!  She is still full of energy and continues to be her feisty self!  She joined dance class a couple weeks ago and is loving it - I think she's a natural born dancer (with her own special moves).  The girls are really enjoying their summer - they play with friends almost everyday.  I'm enjoying the summer with the girls, however I'm extremely stressed.  Feelings of not being able to get Allie a diagnosis is creeping up again.  This tube wean has really taken a toll on me and watching Allie consume very few calories each day is still hard to digest.  It's just extremely frustrating to watch your child refuse food day after day.  But I have to keep looking at the big picture and in that picture, we are all doing wonderful! 

Pool time!

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