Monday, July 28, 2008

New Neuro

I took Anna to see Dr. Klein this morning because she has thrush and I assume this in combination with teething is why she has been rejecting the bottle and anything the least bit acidic over the past few days. Her sleep habits have also been quite screwed up and we are all so exhausted. Then it was off to see Dr. Hernandez, our new neurologist. He was nice and seemed very knowledgeable. I still miss Dr. Miller and he will never be able to be replaced but he is not coming back so I must move on. Dr. H reviewed Anna's records, tested her reflexes, played with her, and talked to us quite a bit. He looked at Anna's MRI and stated he though there was definitely something abnormal with the white matter in her brain. He says he does not like the term "cerebral palsy" and prefers to call it "static encephalopathy." Basically- that is brain damage that is not changing and of unknown cause. He also seems to think there is more going on though. On a happy note, he was able to get the results of the chromosome testing back and it was normal. I was happy but then he told us that test doesn't really tell much and they had to actually do the FISH test for micro deletions to be able to tell anything. He said that test might be back by the time we see genetics. He also ordered some other tests of which I have no idea how to pronounce or what their significance is. The plan now is to have Anna spend a day at Cook's in Ft Worth and have an all day EEG to look for seizures- she seems to be having some where she just stares off into space and becomes unresponsive- not the convulsion kind, they call them absence seizures. Anyway, she will have the EEG and a repeat MRI and we will meet with a nutritionist all during that day at Cook's. Dr. H was quite concerned with Anna's size and her nutrition or lack thereof. I was so glad to finally see somebody sharing my concern. I told him she is chunky now compared to before- he seemed shocked that we had not seen a nutritionist before now. So basically we are no further than we were except one test is ok but then we know that test basically doesn't mean a whole lot. I was telling Kenneth that I just want to say "screw it" sometimes and quit all of this doctor visit after doctor visit crap but then I know we have to keep searching because if we give up we may end up not finding something that is fixable and then Anna will have to suffer the consequences. Unfortunately, I am waiting for a Dr. to tell us Anna is fine and there is nothing wrong and all of this was just nonsense. That will never happen. I know it is cliche but this really feels like a bad nightmare I cannot wake up from. I want to get away from it all but I can't. No matter where I am or where I go or if it is morning or if it is night, this is always with me and causing pain in my heart because my baby is sick and I can't fix her. I'll try to update more tomorrow but I am so tired my eyes are crossing and Anna is actually asleep and Carly says she's tired- I must take advantage of this...

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