Saturday, August 23, 2008


Today was Charlie's neuro appointment and it went well. We discussed medication options for her seizures, since the Keppra didn't do much. We're increasing the Keppra over the next 10 days and after 2 weeks I'm supposed to call and let them know how she's doing. Except if her seizures completely stop, in which case he said just keep her at that dosage. If the Keppra starts to help, he can increase her again, but if we don't get a noticible difference from it, he wants to wean her off that and try Topamax. Once we find a med that works, we'll start weaning her off the phenobarab. Yay!

Her neuro is thoroughly confused by when she has her seizures and how her oxygen levels are affected. Charlie will desat while she sleeps, even with the oxygen on. We sometimes (1-2 times a day usually) have difficulty keeping her sats up and then we know when she wakes up, she will go straight into a seizure. She doesn't have seizures in her sleep. She only has them upon waking. And when she wakes and goes into one, *immediately* her sats start to climb to a normal range, even if we take the oxygen off. And then she's fine. He says it's odd and normally sats will *drop* during a seizure, not climb. I guess Charlie just has to be eccentric. LOL He also said he's leaving it up to us if we want to do another sleep study. I think we will hold off on that for now.

Her ct scan basically showed some scar tissue in areas of her brain and some shrinkage. Some parts of her brain did appear normal. Basically what you'd find after and HIE event. I disussed with him her birth and how I didn't think anything added up. He said because she didn't have decels it was most likely the HIE occured before I went into labor, up to 2 days before she was born, based on when her brain swelled. We'll never know for sure, but it's nice to hear that we're not completely crazy. When a child has an HIE event during the birth, there's usually some SIGN. We were completely caught off-guard!

I told him it had always driven me crazy because when we got to the hospital (first LMH and then Children's) we had a few people who were nasty to us and acted like it was our fault. At the time I DID think it was my fault! Before we knew what was even wrong with her I was wracking my brains wondering if this happened because I didn't eat as well as I could have or if I'd been too lenient on taking my vitamins or if I'd lifted my son too much towards the end. I was SO hard on myself. I didn't need other people to be cruel to me, I was doing a damn fine job myself! So when I thought it definitely happened when I pushed her out, I was at peace with it, knowing the same thing would have happened in a hospital. I'm not sure how I feel about all this now. It won't change anything I know that. If I have more kids I might be more paranoid about going past my due date, or paranoid about all the strong false labor I tend to have. I've been wondering if the constant contractions that last week compressed her cord just one too many times.

He was great about it though. I told him how I felt about her birth and he told me not to even think about it. He said in his (birth) country almost all babies are born at home, and yes, sometimes things like this happens, but it is rare. And things like this happen all the time in the hospital. He said it's just that Americans are so used to hospital births, that they have a hard time accepting when things go wrong at home, because they feel *something* could have been done in the hospital, but the fact is, usually *nothing* can be done. It happens all too quickly and no one can predict these things.

I think that's about it. Oh I missed my exit on the way home and passed a Whole Foods, so I got the urge to stop and look for goat's milk and they had a huge selection! Jugs, cans, powdered. I picked up a can of powdered (man it's expensive!) so that I can make what I need, when I need it and don't have to worry about it spoiling. When I opened it though, there was no scoop in it! So I have to call the company on monday. Maybe they will give me some coupons or something. So once Charlie's stomach calms down and she's back on her motility meds, we will be trying it. I hope she tolerates it better than everything else so far because goat's milk is far less nasty than most other milks out there, especially this crap formula she's on now! Bleh!

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