I think I mis-stated our room situation… we have a room that is PRIVATE but has a door – kind of like the hotel rooms that have the door in between two rooms so that parents can sleep in one side and kids in the other… except that this is SINGLE door and no insulation so we might as well have a window!! LOL Really our room is not all that bad but at 2 am when you have your baby woken for the THIRD time and you are tired as HELL the charge nurse will find you at the end of your rope!!! Today has been better… and I know that it can ALWAYS ALWAYS be worse… I was just pissed that for some huge pie in the sky reason we could not be moved ….. so…. I apologize if I made it sound like the pits of hell… it really is not.. I reorganized the room yet again today so my OCD fit can stop now. LOL
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Good luck with Ky’s surgery . I’m so glad that they are taking her nutrition seriously . I know they don’t with Maggie and I’m getting to a point I don’t care anymore because I’ve fought and fought and the only people concerned are me , her father and her OT .
Here is a WONDERFUL site for parents of tube fed kids Amber. This site is great. Right now they are having techincal difficulties but just keep trying to log on they are working on the issue as I type … http://www.parent-2-parent.org
I have learned SOOOO much from these families . There are some other VACTERL families on there as well .
Big Hugs to you and Ky .
Tracy -Maggie’s mom