So far Peanut is STILL doing awesome at her new feeding regime! I am so excited, she doesn't have to get hooked up until bedtime, and is unhooked in the morning. This has been a goal for SO long, and it has never even seemed possible. Now we are here, and I am sighing a huge sigh of contentment.
I would of course LOVE my Peanut to decide to eat "normally", with her mouth, as most kids do. For some reason she just won't. If you can get a bite in her mouth, she is able to chew and swallow it. She just hates it. Even when she likes the taste of something, she hates having to eat it. No one can explain such severe aversion to me, we have been working on it for years, and it is SO frustrating.
In the end though, we are able to nutrition her up and keep her good and healthy. And now we're doing it with minimal retching and gagging.
Life is good!
Oh, and did I mention that we got approved for the Littlest Heroes photo project?? I have been contacted by a photographer and we are working on setting a date! I am SO excited!!! :)
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
3 comments:
I saw this & wondered if it might be something good for your Peanut. They are having a giveaway.
http://www.5minutesformom.com/5415/is-your-child-non-verbal/
Mouth aversion issues are NOT fun! It's so sad when your child doesn't want to eat. We sit Gavin at the table with us at meals, but he gets SO upset anytime I try to put ANYTHING in his mouth and he looks so bored sitting with us at the table....but what can you do?
Glad to hear that the other feeding areas are going well! That is my goal some day as well.....PATIENCE! Something I'm not always good with! :)
You know, my son is the same way. I can't get him to eat or drink ANYTHING by mouth. Logan seemed to lose all desire shortly after his feeding tube and Nissen. I too hope for him to eat orally someday.
As hard as it, it has to be on their time, when ever that is. Patience is definitely key.
Glad to here you were approved for the photo shoot. Sure sounds ike fun!
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