Saturday, October 20, 2007

Well, we still don't have any results from Cleveland yet. I'm hoping that's a good thing and means there's nothing obviously going on in his labs but I suppose I can't be too sure. Emeric had an eye doctor appt. on Friday because of some strange eye movements he's having. The eye doctor said it's not his eyes, which means it's his brain. We met with the neurologist and she is wondering if what we're seeing is possibly another type of seizure. She set up a 48 hr video EEG. I'm so looking forward to this!!(insert sarcasm here). She also wants an MRI and a muscle biopsy done. I really think if we have to have the muscle biopsy done we're going to go back to Cleveland for it. I just can't see risking having the frozen one done with only 60-70% accuracy whereas we could get the fresh muscle done with 90+% accuracy.

Emeric has also lost weight since we were seen by the neurologist last, which was a month ago. He's lost 18 oz. That's not great news and when we saw the GI at Mayo in August she told us if he hadn't gained any weight that she was going to do a scope & CT scan. She also said if he loses weight at any time to get a hold of her right away. So, I'll be calling her Monday. It makes me upset that he's losing weight. I know part of it, if not all of it, is that he's been pooping 4-6 times a day and puking little amounts all the time. Along with the low grade fever these symptoms make me think he has a virus, but this has lasted for months. What kid has a virus for over 2 months??

Please keep him in your prayers. I don't want to put him through all this testing and yet we can't not put him through it either. We've also scheduled surgery for his tear ducts to be fixed since they're still clogged. The eye doctor said if we wait much longer we'll end up needing a more extensive surgery to fix them so we're going ahead with it at the end of November.

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