Day 19 - Tube Weaning

Hard to believe we are already on day 19 of Allie's first tube weaning attempt.  In a way the time is flying bye, yet it also feels like it's never going to end.  The constant effort it takes to get her to eat is simply draining. One thing I have learned so far (which I already knew) is that if Allie doesn't want to eat, you cannot get her to eat. 

I am a strong believer that Allie still doesn't feel the "hunger sensation".  There is still a possibility that she feels it but doesn't understand what it is.  Since we kept her full on tube feedings for over a year, she might just not understand what the feeling of hunger is. 

Allie ate next to nothing over the 4th of July and she was on a streak of that again for the past 3 days.  Since Friday, Allie hasn't eaten much except a bite or two of solids.  She has been drinking some of her special milk though - so that's a plus. 

Last week our feeding therapist was slightly bummed because Allie wasn't hungry at therapy and it was a struggle to get her eat.  The therapist said that there is no doubt that with Allie being off tube feedings for this long, that she should feel hungry by now. 

So, we are chugging along and staying above water.  Allie is still doing great on her weight, even though she's not eating much.  Not sure how she is maintaining her weight but she is.  We go back for another weight check next week sometime. 

I continue to struggle with Allie and trying to get her to eat.  I have learned that she is in control of what she puts in her mouth and if she decides to not eat, there is nothing I can do at this point to convince her to eat.  If she doesn't want to eat, she will still ask for a tube feeding.  I try telling her that we are done with tube feedings and now she has to eat by her mouth.  She doesn't care, she still refuses.  But obviously, if she is maintaining her weight, she is drinking enough calories for her little body. 

Overall she continues to do great and we are very proud of her.  Allie is one tough little girl!

Please add our friend Shannon and her family to your prayers.  She lost her husband unexpectedly and she has 3 young girls at home. Thank you.

Allie taking a bite or two of her sandwich a the beach

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