"You can't hit a home run unless you step up to the plate. You can't catch fish unless you put your line in the water. You can't reach your goals if you don't try." Kathy Seligman
I wish I knew why Allie doesn't eat. I don't know why she chooses to avoid food or why she doesn't feel hungry like most people do. As a mom, these are hard things to understand, eating is suppose to be a simple & natural thing to do. It's a tough road to go down when your child chooses not to eat (or in some cases they have a medical condition that doesn't allow them to eat).
The quote above is what I am currently feeling. I know Allie is doing wonderful right now and she is finally gaining weight with her tube feedings and continues to be vomit free. She is finally at a point where I can breath easy and let Allie just be Allie. However, there is also a part of me that knows the longer a child is tube fed, the harder it is to wean them from the tube.
I'm reaching a point where I'm thinking a feeding clinic/intervention is the next step for Allie. There is no medical reason that Allie doesn't eat (at least the doctors cannot diagnose anything). She has ever ability to eat but chooses not to. She can eat a normal meal and she does every once in a while. I'm starting to think that Allie truly doesn't know anything besides "not eating". It's how she grew up and now she has to learn how to eat. I know that if we keep feeding Allie every 3 hours with her feeding tube she will not want to eat because she is always full - I get that. But, just reducing her tube feeding will not necessarily make her feel hungry. Honestly, Allie probably doesn't even know what hunger feels like. She MIGHT feel it but she probably doesn't know what it is and what she is suppose to do when she feels it. I don't know but one thing I know is Allie will need a trained professional who will work with her for 3 or more meals a day.
Right now I'm trying to decide if it's the right time to proceed with a feeding clinic/intervention. Of course it takes several months to get into any inpatient feeding program so my goal of taking the summer off is still on target. I want Allie to just be Allie and enjoy the summer with no doctors or needles. I have lots of thinking to do and decisions to make - I know there is no right or wrong answer. Nothing with Allie is black and white. I have learned to accept that and I just need to follow my motherly instinct.
I'm back to thinking it would be very nice to know all the answers in this big world of unknowns :) One thing I do know is this beautiful face below is my inspiration and it pushes me to continue searching for answers, treatments, clinics, etc. Anything that will help little Allie in the long run.
We started feeding therapy we are hoping it is a step in the right direction to get off the tube!
ReplyDeleteIts through early intervention and only once a week and I know we may need more than that but this is a start.
Sean didn't know what hunger was but he is learning you can learn it I will tell you it took months for him to figure out hunger though but we kept trying and he finally FINALLY will turn his head when full! (well at least some times!) but sometimes is better than never! and he will sign more and get cranky when it has been a while in between meals/snacks. It will come to her. For the longest time I thought he was missing the signal between his brain and his belly, but he just needed more time to figure it out!
I can see how this might be good for Allie since she can and does eat sometimes. I can totally see your line of thought that she may need professional guidance to understand the sensation of hunger and what you are supposed to do with it. Now that you've brought it up, I think it kinda sounds like Allie would be a great candidate for the inpatient clinic. I say-apply and I am sure they will tell you if they feel she is a good match for their program. I'm excited just to think she may get off her tube. Haven isn't there yet, but I have faith she will get there. HUGS!! Will pray for guidance for you guys!! OH and I have been slacking on reading your blog updates...because I am a slacker : ) So I didn't know you were taking the summer off...PROMISE I didn't try to copy your plan/thought!!! I guess our great minds were just thinking alike : )
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