So, over the last 12 months, I've been asked by several people (believe it or not) to start a blog so that our friends and family can keep with Little Miss Sassy Pants and her medical/feeding/tube stuff. I read other peoples blogs and think, "Nothing I have to say will be interesting or stimulating" but over time, I've felt that I'm actually HELPING alot of fellow tube moms with the things I've learned in my quest for a cure, the unbelievable amount of internet hours I've spent learning, digging, searching and the common sense approach that I *try* to take towards Reide's health issues.
I had someone tell me once, while laughing/ridiculing me for giving Reide "paci time", that we were "ridiculous with Reide"..... THEN, I smiled, felt embarrassed, questioned my abilities as a mother, questioned Reide's temperment as abnormal.....NOW, I'm certain, beyond the shadow of a doubt, no questions asked, that I've always given my daughter everything she needed, that I'm a fabulous mother. NOW, if someone were to make the same gutsy comment to me, they'd be the ones leaving with their dignity disturbed and their abilities in question. I've gained/learned unbelievable strength, stamina, knowledge and perseverance over the last 12 months.
So, what's next? Well, we'll take Reide to Atlanta, GA to the Children's Center for Digestive Health Care (http://www.ccdhc.com/) on December 7th for a consultation and see if they have something to offer her and her poor tummy. We're curious to know the state of her Nissen, whether her reflux is still as bad as we think it is and what our next move is. We're also planning a home-based, Graz-style (http://www.notube.at//) tube wean beginning December 17th. We've got so much riding on her wean....that deserves a "Post" of it's own.
Till then.......
Goodnight.....the 2am tube feed awaits me in 2.5 hours.....*sigh*
I believe that you are an incredible wealth of knowledge and even if we may not have the exact same reasons for having the tube, we can both learn and give each other very helpful advice.
ReplyDeleteTo be quite frank, I often don't feel like the best Mom. I constantly question her care. I go with the information that I have available and I make the best choices with the information that I have. You seem so confident and I really do admire that in you.
Reide is beautiful, confident, sweet, and she will eat. How soon, time can only tell. But I have complete faith that she will learn to like foods, and have the same wonderful attitude about life that you do. Thanks for being so open about "The Business of Reide".
Great first post! I know nothing about what you are going through, but have learned a lot just keeping up with you on Facebook. I have learned that you are a wonderful Mom and very STRONG!!! I can't wait to see what you find out when you go to Atlanta! God Bless!
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