February 1, 2008
We’ve heard from M’s family several times today. My nephew is doing a bit better. They’ve already lowered the oxygen on his vent to a very low level. Both M’s brother and parents were able to see him, and he is responding to having people around. There aren’t enough nurses for the unit, though, and major alarms are being ignored on those babies. I’m really wishing they were in a large city where if this happened in one hospital, they could easily transfer to another nearby. This is the only hospital with a NICU for over a hundred miles in any direction.
My SIL isn’t doing so well, though. She isn’t recovering the way they expected. She’s still dependent on the oxygen, and each time they try to wean her off it, her blood oxygen level drops through the floor. She has fluid everywhere, too, and apparently everything they’re doing to flush it out isn’t helping. They moved her to the ICU earlier tonight. It’s in a different building altogether, so M’s brother keeps wandering from one to another to visit his wife and baby. They also won’t let him visit either past normal visitor’s hours. My SIL hasn’t even seen her baby yet.
So in a nutshell, things aren’t going particularly well. Neither one is critical, but everyone is quite worried about both of them. It’s going to be a long weekend around there, I’m sure.
February 1, 2008
My suspicions were confirmed yesterday: I’m not crazy (at least not entirely). We had our first meeting with someone from ECI, mostly to do paperwork stuff, but I noticed her watching PJ very carefully. She agreed almost right away after listening to him talk that they were not normal speech patterns for a 2-year-old. He definitely qualifies for the longer assessment in that area (which happens in three weeks). That assessment determines whether he qualifies for services. And while the woman certainly agreed he is behind in speech, he will only get help if he is a certain number of months behind (I think she said six).
I’ve been debating what I really want to happen. I think the best scenario would have been for her to watch PJ yesterday and wonder why I’d called her. I would rather waste her time and look foolish if it meant finding out that nothing was wrong. But that didn’t happen, so I think the next best scenario would be having him qualify for services so that he can get help. I don’t want to find out he’s that far behind, but it’s already been confirmed that he’s behind, so the best thing would be that he gets help so he can catch up. I think I will be most frustrated if it turns out he’s five months behind–not enough to qualify for services but too far to be able to catch up easily on his own.
She said that it looked like PJ has a real deficiency in what she called “functional language.” Most of what he says is “jargon,” phrases or words that he associates with certain situations that don’t really communicate much to us. Functional language is answering questions or being able to communicate his wants and needs to us in ways other than dragging us places and throwing tantrums. We’ve had a real issue with this lately, so I know PJ is getting frustrated with not being able to communicate. Hopefully he will qualify for the help he needs so this problem can get resolved. I just hate that we have to wait three whole weeks for the next step.