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I have not posted anything about in a long time. His condition

changes so often and he is IN and OUT of the hospital so much, It is

hard to keep up with updates. After his 3 heart surgeries, and the

Nissen for reflux we thought he was out of the woods, but then he

started having seizures, and several episodes of life threatening

blue spells, he has coded and been brought back. Last night while in

the hospital his heart stopped. They managed to start it again, and

he is at Doernbecker. He is now 9 months old, and he has spent most

of his life in and out of the hospital. The longest time at home was

one month, after he first came home from NICU. Every other time he

comes home from the hospital he ends up going back within a few days,

usually due to respiratory distress or blue spells, and now with the

seizures.

Leon and Racheal, have ended up losing their business and are

claiming bankrupcy. with the incredible emotional stress since

was born, they continue to have a positive attitude and continue to

grow in their +personal lives, becoming stronger. And as for

me,'s grandma, I cry alot and pray for my family to be able to

survive this tragedy.

I wold like to ask if anyone here have children who have survived a

cardiac arrest? has there been brain injury? Anyone with pacemakers?

seizures that started around 6 months which have been very difficult

to control? And to be honest with you, I think these super

specialists really are confused and really dont know what is going on

with .

Wishing you All the very best for your families,even though I have

not posted for some time, I do read as much as possible about you all.

Liz

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