Late last year Nicky started having issues with his G-tube. This is the same g-tube that he has had since March 2000, and we’ve had minor issues since then, but lately it was hurting, more and more, and nothing was helping. After trips to his Doctor and the ER, tube changes etc, it became clear he either needed a new ‘hole” or something was wrong with his stomach. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. Any meds or food he had to take orally and that was a challenge for him. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. The whole thing was a disaster. The day before the surgery Stanford pre-authRead More →

Nicky’s having a rough time right now. Just when he was able to clear his throat by chocking up a piece of skin-not a pleasant thing, since now he has a wound in his throat that needs to heal-he is now dealing with a big piece of skin torn from going #2. It’s always something. I promise to do a blog at Caringbridge about our trip to Stanford sometime this week-I can never find the time. This is the only morning I have this whole week to do ‘stuff’ and all I did is take care of this blog while I helped Nicky doing various things. Which is why my poor book is written in 15 minutes here and 15 minutes there increments. It’s mind boggling. At this point, I will be happy if I am done by the end of summer/early fall, but I am not making any promises!Read More →

It’s true with anything, anywhere in the world. You give something for free for people in need and some will take absolute and complete advantage of it, making someone else suffer in turn because they are taking something away from those who desperately need it. But what do we do, take this advantage away, make stricter rules or close our eyes? Surely the rotten tomatoes of our world needs to pay consequences, but do they? Never in my experience. I always found it perplexing how something designed to specifically help children like my son, who suffer horribly every day of their lives, all of a sudden becomes ‘not available’. It’s everywhere in sight. From that healthy person taking the last handicapped parking spot I badly need to get my son out of the car, to the lady at the amusement park telling us that my son has to wait inRead More →