The Next Step for Eli

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Eli had his 3 month post laser ablation surgery check-up in Houston. Our doctor in Baltimore ordered a 48 hour video EEG over concerns during his recovery process. Eli is having myoclonic seizures daily- which is like a twitch similar to “sleep jerks” that people sometimes experience. One of the side effects from one of the medications Eli is taking can produce myoclonics so as we started decreasing that medication we noticed less myoclonics and we are hoping that it was not due to his HH. However, the EEG showed 14 seizures just in the first 24 hours. We only noticed a few so that was shocking that his brain is firing off like that so often. And we began to realize after trying to remain so optimistic that we were nearing the end of this adventure, that we may just be stuck in the middle. And indeed, Dr. Wilfong, the neurologist in Texas recommended surgery again. It still didn’t sink in until our appointment with the neurosurgeon right after. He gave us a lot of time and space during that appointment and there as he let us sit with it, and as Eli played with a sticker book on the floor, the sadness started to set in. The sadness that he has to go through all of this again. The sadness that we are indeed seeing some cognitive decline. The sadnesss and worry of possible complications of brain surgery. The sadness of seeing his physical body again change as result of the high steroids. The sadness of how such a fun, bright, cute little boy is managing these tough circumstances. The sadness for us as a family continuing to be stressed out for months to come. Then the logistics, getting more time off work, paying for another long trip to Texas, needing help to care for him once we return to Baltimore when he can’t go back to pre-school, struggling with the insurance company, setting up special education services… So, we continue on this adventure hoping that this unlucky ’13 year will end with more success.