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Neely’s ADEM Recovery UpdateArticle posted on Thursday, July, 28th, 2011 at 7:15 am
We have a little sign hanging in our living room that says, “Everyday holds the Possibility of a Miracle” and not a day goes by that my eyes don’t linger over those words as I think about Neely’s recovery. It may only be for a moment, but those memories seem to linger just below the surface and remain as a constant reminder of everything for which we have to be grateful.
Last month we had a check-up with Dr. Morales. It marked a 2-year anniversary of us being released from the hospital. Neely, as usual, was so excited to see him. As soon as the nurse opens the door for us to go back to the exam room, Neely begins scanning the halls to see if she can be the first to see him and I always wonder if he has that effect on his other patients.
I’m fairly confident that she has few (if any) actual memories of the time that she was so sick, yet her fondness for visits with him is something that has been consistent from the beginning.
I’m not sure if/when/how we would ever be released from Dr. Morales’s care. We just haven’t gotten close enough to even think about that step – but I truly cannot imagine the day. I guess it would be weird if I insist on annual visits regardless. (HaHa)
Neely’s progress continues to amaze us. She has remained seizure-free (2 years at the end of September) and is scheduled for an EEG on August 5th to monitor her status. EEG’s can be a little tricky to prepare for from a parents perspective. Ideally, they would like to be able to monitor her from both a waking and sleeping state. So she goes into the test sleep deprived. Which means Mom is a little sleep deprived too! The night before the test we will keep her up until mid-night. Thanks to Neely’s medicine (which has insomnia as a side effect) keeping her awake isn’t too hard. After a few hours sleep, we wake her back up at 5:00 am and then keep her awake until the test later that morning.
The test lasts a few hours. The most difficult part of the test for Neely is having the EEG cap put on. It’s an elaborate mass of brightly colored wires that are attached to her head with a very sticky gel. (Not ideal for little girls with long hair) Once the cap is on, we just relax, watch movies, play games, and try to get Neely to take a nap. We typically get results from Dr. Morales very quickly.
If her EEG looks good (and we have every confidence that it will) we may be able to begin weening her off of Keppra, the anti-seizure medication. That will be a giant step for us in trying to close the ADEM chapter of Neely’s life. We can’t wait to share the results with you…Stay tuned.