This was not a picture Max's first EEG, (electroencephalogram ), but it was a few days after his first EEG. For his first EEG we had no idea we would want to capture his history so there are no pictures.
|4 months old|
In this picture, he was four months old and was in status epilepticus
. It was just days after we had learned that our baby was having over 250 seizures a day, and had a rare metabolic disease. He was hooked up to a vent breathing for him and they had put him in a coma to give his overtaxed brain a rest. He wore these EEG leads for a month. It was only taken off twice for his brain surgeries, and always put right back on. You can't see his beautiful baby ducky hair under his EEG hat, but believe me, it was so soft and lovely. A newly graduated tech took off that EEG after a month with such tender care. As she started removing the leads his beautiful little ducky feathers came off in clumps. With each lead more hair came off. He lay there quietly and tears ran down her face. He was so little, and his body had been through so much in that month.
|Contemplating his world takeover.|
This was our baby, a month later, less part of his damaged brain that was causing so many seizures.
This is Max this morning.
|Still has one finger on things.|
After hundreds of EEG's in the past 13 years, I know now to shave his hair before we go in. He saw the same EEG tech today, who took that month long EEG off when he was a baby. She greeted us in the lobby with a hug each and took us back to the familiar room. She let Max fight her as she patiently put on the EEG, and we got caught up on each other's lives. Once he was all hooked up successfully, we put on his super suit and let him do his thing. He stayed awake ALL NIGHT, not closing his eyes once, to prepare for this morning's EEG, so we were really hoping he would fall asleep for the test. I don't remember the last time he slept for an EEG. It's important they capture some sleep to see what his brain is doing when he's not awake. We turned the lights off, and played him soft music while I patted his leg. He finally dozed off for about 10 minutes in the middle of the test. Then popped his eyes open as if on cue at the end.
|Awake after his test and proud of himself for sleeping for a whole 10 minutes.|
As she was taking off his leads she remembered when all his hair came off as a baby, saying "at least none of his hair will come off this time."
We should get the results soon, but hoping it shows some actual data to back up the great developmentally gains we have seen in the past months. And hopefully his doctor will agree 10 minutes is enough sleep captured to not have to do an overnight test at the hospital!
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