Monday, June 6, 2011


Well, we didn’t get home like we had hoped for, still here waiting… Waiting for what? Yeah, that’s what I said…

We got a phone call this morning from CHOP telling us that they added Cole to our insurance policy. She went over the deductables and that his surgery would be covered 100%. Ok, I hang up the phone and go, “Wait a minute. How the heck can they add him to our policy without us consenting? And we don’t want him on our policy!” ‘Ashley had to call the insurance company anyway because of a mix up with Cole’s pediatrician appointment; and so she asked them and she said they just called and told them when he was born. We won’t really know for sure until bills come in, since insurance companies can get away with lying to you.

Today, Cole got his eye test done. Well, it’s not really a test. They were looking into his eyes to see if they could see posterior embryo toxin. It’s just a fancy word for a circle thing that hangs out in the back of his eye. It’s just another flag for AGS and it was very apparent that he had it. Three different eye doctors saw it. He had some labs drawn while he was sleeping and slept right through it. He sleeps allot. We have to try to keep him awake when feeding him. We have to wake him up so he doesn’t sleep through his feedings. If he wakes up and he’s not hungry and we don’t feed him, he’ll sleep right on through. We’re hoping he does this at night…

All those other fun tests that were “scheduled” weren’t “scheduled” at all. Pretty sure it was the Residents fault. Who strangely never poked their head in to say, “Hi” even though one of their excuses for keeping us today was for them to get to “know” Cole. So tomorrow he is scheduled for his X-ray first thing in the morning and the hearing people better get their butts over to him right after that. They drew labs on Cole twice today and both of them were comprised samples. Meaning they screwed it up somehow. The poor kid has nowhere else to be poked and each time they have to literally squeeze the blood out of him. His labs have been fine since he’s been born, I’m not sure what they are so concerned about that will change in a day. We can always go and get them drawn out patient around us if they want them to be checked in a few days. But yeah, we said if you screw it up tomorrow morning… you’re done.

They wanted to give Cole Tylenol today to help with the pain of one of his vaccinations. Tylenol is a big, “NO” for liver patients. And since we don’t know how Cole’s liver is affected by the AGS yet, we’re both hesitant about giving it to him. Of course you’re met with, “When I get shots I take Tylenol cause it hurts” and “let me go see what the doctor says” attitudes. {I wonder why he doesn’t come in and say hi to us?}  Well, we didn’t give it to him and he was fine; it didn’t phase him one bit.

We did have one of our favorite nurses for a few hours today and our favorite male nurse came in and talked to us for a little while.

We’ll have an appointment with cardiology before the end of the month. We have a pediatrician appointment on Thursday and I’m sure we’ll need a GI appointment in a couple of weeks.

So anyway, tomorrow?

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