Tuesday, June 21, 2011

Ohhhhh what to do....

Allie had in-home feeding therapy again today and it was anything but successful.  The session was suppose to last 1 hour but due to Allie refusing to eat, the session only lasted 20 minutes.  Allie started out by eating a little chocolate pudding and then 1 bite of a pizza pocket.  After that, she was done and wanting nothing to do with lunch.  Allie actually told Ms. Anna (her therapist) she was going to go to bed and she would see her later.  Ms. Anna went into Allie's room and carried her back to the table.  From that point on, it was a constant fight to get Allie to take even 1 more bite. 

After 10 more minutes of trying to get Allie to eat, Ms. Anna said, "Allie, if your not going to eat, I'm going home.  I come here to help you eat and if you won't eat, then I'm leaving".  Allie didn't mind, she didn't want to eat anyway.  So, that was  how our feeding session went today - a complete failure.

Part of me is happy that Allie acts like this for Ms. Anna because this is typical behavior that we deal with every single day and at every meal time.  This gives Ms. Anna the opportunity to see all of Allie's bad behavior.  Another part of me feels sad when I see Allie acting like this for Ms. Anna because it's just a strong reminder of how hard it's going to be to get Allie to eat like a typical 3 year old.

I constantly go back in forth with myself trying to figure out if now is the right time to try weaning Allie off the tube.  Do I have the strength, patience and endurance that its going to take to make Allie eat like a typical 3 year old?  Do I wait until she's older and understands better or do we continue to try and get her to eat since it's a known fact that the longer a child is tube fed the harder it is to get them off the tube.  I'm torn because so far, my efforts to get Allie to eat are failing.  Yes, she will eat at times but it's on her terms and her terms only.  It's a power trip for Allie and I don't know if I have it in me right now to fight that battle.

There are two very different approaches we can take when it comes to Allie's oral eating.....

1) We go back to simply offering Allie food for every meal.  If she chooses not to eat, we are okay with that.  She will receive a tube feeding that will provide all the nutrition she needs. 

2) We continue to try to get Allie to eat orally at every meal.  This doesn't mean offering her food and if she refuses it's okay.  There is no okay in refusing.  We don't force feed her but we do everything in our power to get food into her mouth.

I have to admit that #1 is easier on us, however it's mentally exhausting having to tube feed her every 3 hours.  Tube feeding is saving her life but it's also frustrating when you have a child that has every capability to eat orally but simply refuses. 

Option #2 is also mentally and physically exhausting.  Trying to get a child like Allie to eat is no easy task.  I know that people who have children that enjoy eating cannot even begin to comprehend what we go through.  But take my word for it - it's not fun and there is no magic food that my child will eat.  I have tried everything to get Allie to eat enough calories in a day but she just cannot/will not do it.  So, having a food battle 3 or more times a day is tiring and stressful on the whole family.  It's worse than you can imagine and if you don't believe me, I welcome you into my house anytime any day to share the experience of having a child who refuses to eat.

So, neither option is perfect and that's okay.  I just need to figure out what is best for us as a family. 

1 comment:

  1. It is a constant struggle. I wish our girls would wake up one day with the natural desire to eat...but for some reason we have this battle before us. I am so sorry....it sounds like it is really taking a toll on you right now. I totally understand the ups & downs...you know I refer to the roller coaster all the time.

    I can't decide our next move either. It seems pointless to do the feeding therapy because it simply gets us no where, but will doing nothing at all hurt her?? We are faced with these hard, hard questions every day. HUGS!!! Oh my goodness-LOTS OF HUGS!!!

    SO, SO, SO many of Haven's feeding therapy appointments have gone like that. Remember when Haven got kicked out of her session? Yeah, she was like Allie-just glad it was over. The typical methods just don't work for our non-typical girls. Praying for our miracles to come quickly!!!! LOVE & HUGS!!!!