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wires and what not


Forum: Children with Special Needs

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  #1  
December 14th, 2009, 05:22 AM
Ditzzy's Avatar Stupid Lamb;)
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Location: OH-IO
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Ava has been hooked up to medical equipment her entire life. This is a depressing thought to me. She doesn't know what life if like without tubes and wires.

Who else is dealing with this?
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  #2  
December 14th, 2009, 06:22 AM
quietsong's Avatar Just Another Slacker Mom
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Location: Missouri
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I know what you mean! We're lucky that Danny's stuff is portable and doesn't hold him back a lot...but life is definitely different for him. Wrestling, cuddling, etc is all different because of his implants and having to be mindful of them, and always will be. I'm thankful for the technology, but it does suck that he will wear medical equipment his whole life in order to access the hearing world.
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  #3  
December 14th, 2009, 12:41 PM
iamkc's Avatar Platinum Supermommy
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(((HUGS))) Milo is mostly hooked up while he's sleeping (oxygen, oximeter, feeding pump), but we have to give breathing treatments every 3 hours that last an hour, use the feeding pump a few other times throughout the day, and use oxygen quite a bit while he's awake. Nothing is portable, so we're stuck here most of the time. I feel badly for him. Once he's finished one therapy/treatment, it's time for another. We're always having to tape something to him, take it off, change it, clean the button, etc. He hasn't gotten used to any of it, either. He screams when he has to have oxygen awake (often), throughout the entire breathing treatment (EVERY time!), and he pulls out the tube AND button every time we hook him up (luckily, we get all the supplies for gravity feeds, too, so that helps, if he'll sit still!). I feel like he has very little play time, very little out-of-the-house time, just very little time that he's not being poked, prodded, or pinned down. He also gets a shot once per day, which is still causing quite a bit of grief, even after 8 months! He may soon have to have suction and apnea equipment. The apnea equipment will just blend in, but OMG how I hate the thought of having to suction him again! (We've already been through this.) BUT maybe these things will become easier as our kids get older, especially once they understand how to deal with some of it themselves, get used to it, and maybe even STOP some of it! That's my hope, anyway!
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