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  #1  
July 7th, 2009, 02:28 PM
peimum's Avatar life blows sometimes.
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So, I was thinking.... those of you who have a heart child that is a little older... (mine is 3 months old) Could you tell me (and the other parents that are new to this) something that you wish you would have known about.... I know each child is different.... but are there certain things you did not expect?
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  #2  
July 25th, 2009, 04:52 AM
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DD's condition is still so mild, we haven't really had to deal with much.

I did see a mom, who put together a binder that kept track of her child's health and medical records from seeing various specialists. It helped to organize test results, doctor reports, lab work, lists of questions for the doctors, etc. I really should start doing something like that.

The cardiologist reports that DD's peditrition gets are always very interesting to read. DD's heart overall really stuns her doctor.
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  #3  
July 25th, 2009, 12:22 PM
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Location: Carroll Valley, PA
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Not really something that I wish I had known, but something that I've found makes school paperwork easier....

Jude is in preschool, and I've found that it's easier to print up a card, or paper, that briefly explains his heart condition, and what sympoms and signs are red flags for him, his doctors names and their phone numbers. You can just give them to the teacher(s) and health staff/school nurse. It keeps you from having to repeat it to everyone, and is a way to make sure they remember. It can be placed in your child's school file for quick reference.
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  #4  
August 4th, 2009, 04:09 PM
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Oh -- I forgot about that! I went onto a website (can't remember if it was web md or the American heart association) and printed up a "fact sheet" that explained DD's condition. It was easier for her to see a visual of what I was talking about. I also highlighted the signs and symptoms of what to look for and to let me know if she's noticed DD experiencing any of the symptoms.
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