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MUFFIN862's Photo MUFFIN862 Posts: 5
8/6/07 9:29 P

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Reading your site makes me think of my daughter. She has Tetrology of Fallot. So i have been through the blue spells. The words of the drs say she wont live past 72 hrs old. And saying she wasnt having cynosis at 3months old when she really was. Most of what you say about your school yrs is what she goes through. She is already pulled from gym for the rest of her school yrs, has been through the teasing, has considered ending it all a few times. And has few friends. She is now finding that she can no longer ride her bike which is depressing her again. But i am trying to work with her through it. Trying to find other things we can do. like go swimming and so on. Just some days its so hard. Now wonder i gained weight over the yrs. I tend to eat when i feel down.. Go figure lol.

MA


 
KATHY71's Photo KATHY71 SparkPoints: (0)
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8/6/07 8:35 P

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Welcome to the group. I have a Congenital Heart Defect myself. I am a little (ok a lot) older than your daughter. If you get a chance please check out my website at www.freewebs.com/tasurvivor. I think it might help both you and your daughter. I also run afew Yahoo groups if either of you are interested in joining let me know.

Please just know I am here if you have questions I will try and answer what I can.

Kathy

A person's task is to hear the Lord saying to them everyday "I have chosen you and you are precious and you are beautiful and I love you".





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MUFFIN862's Photo MUFFIN862 Posts: 5
8/6/07 8:03 P

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I just joined this group. I am 40 yrs old a mom to 7 kids and a grandma to 11. Our 3 older daughters are my step daughters (his children). (all over the age of 20 now). The last 4 are ours. One of which has a congential heart disease. She is now 15 yrs old and has already had 4 open heart surgeries to correct her condition. For the most part she is doing great. Just the off days she has now and then. As she grows and understands her condition the more stressed i see her get. Its hard to explain to her what is going on and why HER.. The common question i get from her. :( She knows that heart surgery is going to be a fact of life for her. She knows that she will need another one in about a yr or 2 depending on her body. She is feeling the warning signs now and is scared. I know its not time yet but she doesnt see that. She just feels her self getting weaker and more fatigued by the day :(. Its really hard on a person to deal with something like this especially when its your own child. Some days i dont know if i can answer all her questions or have the strength to stay strong for her.

MA


 
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