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Hi. I'm Steph, I'm 21, mom to 3 boys, Xavior 3, Patrick 2, and Tristin 9 months. I guess I'll start with Xavior, he is still not fully diagnosed, but so far hes been DX'd: deaf in his right ear, HOH in his left, low muscle tone in his legs(genetic, first boy born is usually the one who has it, my 19yr old brother is missing muscles in his thighs), possible PDD-NOS, allergic to ranch(not sure what ingredient){skin reaction}, OCD,his mental age is about 1 1/2-2 yrs old, he also has a bad uncontrollable temper. He was born medically "normal", he lost his hearing due to severe ear infections and extremely high fevers {106.6 was his highest} when we found out he was deaf, that's when we learned about all his other medical problems.I'm already tired of hearing the questions "oh, is he deaf?" or "is that a hearing aid? is he deaf?" Sometimes i want to tell them, "nope, hes not deaf, and no that's not a hearing aide, i put that on him because i think it looks good." but i don't, i kindly answer their questions. but sometimes i wish people would not ask me anything. It seems like its everywhere we go. We call his aide his "ear" because his real ones don't work. and when he asks for his ear off people look at us weird, lol. Patrick has GERD, and a milk intolerance, he is outgrowing the GERD, and can now have some milk products. Tristin, we are just now starting to dx, he has possible gastroparesis{paralization of the stomach}, allergic to apples{rash and horrible diarrhea},he also possibly aspirates when or after meals. so far we have trialed apples and bananas, so food allergies may include more. I am new to the whole mom to disabled children, but slowly i am learning how to handle and cope, i catch my self crying a lot still, and hopefully that will pass with time. We have had a upper GI done, an ultrasound, and an endoscopy, with biopsy's taken. Well thats all i think for now.. Thanks for reading. :)

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Hi Steph & welcome to Hopeful Parents!

 

I'm Diane, mom to 32-weeker Evan who's now 10 and  in fourth grade.  His issues include hypotonia, hyperflexible joints, global dyspraxia, and some form of  high functioning autism.

 

You certainly sound like you have your hands full having three little ones with varying diagnoses, and I can understand you wanting to take your frustrations out on the unsuspecting general public. :)  You might consider using the opportunity to educate them about the dangers of high fevers and ear infections.  They're just curious and don't know what to ask, so they ask the first idiotic thing that comes to mind, because most people aren't used to seeing a hearing aid on a preschooler.  Evan signed almost exclusively for over a year, and I know I got some strange looks, because he obviously could hear me just fine.

 

I'm glad you joined us and I hope you find the support you're looking for.

 

Diane.

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