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  1. I am so sorry :( Praying for comfort while you...

  2. Praying for strength and that fighting CDH...

  3. Hope things are still going along ok... I live...

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    Seattle is a good place to be. We have gone...

  5. Thanks Sandi, Sean can't have a right heart cath...

  6. exercise induced pulmonary hypertension

  7. Nitric for pulmonary hypertension, older child?

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    Each child is very different. One of the things...

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    We have had Sean on medic alert for several ...

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    Hi Angie, and welcome to the forums. I am so...

  11. As the parent of a very complex CDH kiddo (16+...

    As the parent of a very complex CDH kiddo (16+ yrs old, who lost a large portion of intestine both small and large as an infant due to NEC) we were told that he is not allowed to have any live...
  12. Thanks everyone! We got some great information...

  13. Question about meals in the hospital for parents

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    HI Courtney, Sorry it took me so long to get back...

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    Hope you don't mind my chiming in here... my son...

  16. I assume that he has had a BM by now and you are...

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    Wow, just found this... it has been 12 years now...

    Wow, just found this... it has been 12 years now since I updated, and a LOT has happened! Sean is 15 1/2 years old, and still just as wonderful as he has always been. Briefly, his scoliosis issues...
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    (((hugs))) I am so sorry... I have been...

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    Face it, these kids are... Lol... Funky!! Ok,...

  20. Thanks for the update.. It might indeed take...

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    My son has had 15 heart caths... None quite so...

  22. Hi rose, Actually Sean has had 47 surgeries...

  23. Because Sean is TPN dependent (IV nutrition, that...

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    My son is also a CO2 retainer... and has...

  25. Sean has a partially paralyzed diaphragm... he...

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