I can't offer any advice but my thoughts and prays will be with you and your husband and of course for Simon.
It's never easy to make a decision about if it's time to let go or not but I think that what Laura's Babies said makes a lot of sense "I would check out ALL options and weigh them all, research online as much as possiable to learn all I could keeping in mind quality of life verses quanity. If he could live a normal happy life after having that surgery and you can afford it, and are prepared for the after care and make my decision from there."
Good luck,
Melissa
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