?

[Guest guest]

No you really don't know with our kids. As our card told us, they

don't come with a manual. You have to wrack your brain and try to

think of everything when they are small and sick like this. And you

do never know about the heart stuff either --a year or two ago on the

lists there was a little boy with DS about 8 or 9 I think who died

due to undiagnosed hole in his heart and subsequent pulmonary

hypertension --and he had been seen regularly by a big

hospital/cardiologist --it was just hidden somehow. One of the

attending cards once with Evan told the rest of the team to listen up

real good on Evan's heart because that day it appeared he had a

healthy heart. He said, " This is why pediatricians miss these heart

defects --it is turned in such a way at this moment that if you

didn't know any better, you would think this child's heart is

perfect. " It wasn't and we had surgery a few weeks later.

Am praying you find answers soon. Just keep after the docs and keep

asking them questions. Our card was on the phone a bunch with cards

from all over the states trying to figure out Evan. It possibly

saved his life.

Priscilla K

>>>>>>>>> (PST)

Thanks for your input, Priscilla.

We have been thinking about his heart too, since he has a small ASD

II which is supposed to be slowly closing by itself as we were told

by the cardiologist. He just had an ultrasound checkup last July and

they said everything was fine. When he was about 2 months old he had

a MRI of the heart done as well, just to make sure they hadn't missed

anything with the previous ultrasound. But you never know, do you?

I'll keep it in mind.

>>>>>>>

Priscilla Kendrick, married 29 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

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