Meeting Dr. Black

We saw the neurosurgeon, Dr. Black, last Wed. and Ella now has a helmet too since Friday. Our frustration with Children’s Hospital continues. I just don’t get it. At one point, I understood there was going to be coordination between the Cranio-facial surgeon and the neurosurgeon. Now it looks like there isn’t even coordination between the epilepsy neurologist and the surgeon. I just give up. I feel like we have to make all this happen somehow or it just won’t. I sure look forward to the day when we won’t be so dependent on each of these different specialties. Dr. Black picked Ella up from her car seat and held her as he talked so softly to us that we could hardly hear him. At first he said he would like to wait 6 months, but then after listening to us he suggested we come back after 3 months and then as we got up to leave he said that if we’d really like to do the operation sooner that he would be okay with that. Since then Etan and I don’t see much point in waiting. If she were developing well it would be different but since most of the time it just seems like she is drugged up and so subdued, we think we’d like to go ahead. Black told us the operation will take 2 to 4 months to schedule anyway. Ella is really cute in her colorful helmet but she woke up screaming last night during her first night sleeping with it. She barely cries so we took it seriously and took off the helmet. She screamed again this morning upon waking up from a morning nap with it. Her whole head is sweaty when she wakes up like that even though while awake it doesn’t seem to bother her at all. I guess she’ll just have to ease into it.

This entry was posted on Sunday, January 27th, 2002 at 9:42 pm and is filed under Ella's Log. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.

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