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Owen 👉 Mom is Colleen
@keep_goin_owen

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2 years ago today we woke up at 4am, signed the papers, and put our son in the arms of a CHOC brain surgeon. It’s a date that’s burned into my soul forever. At that point we were absolutely desperate, long dangerous seizures were striking every night and during these episodes Owen would wheeze struggling to breathe and be completely paralyzed. It was terrifying. It was dangerous. And we were out of options. So we took a chance on a corpus callosotomy surgery that had only a 60% chance of helping (not curing mind you, that wasn’t even part of the discussion). We did the due diligence of getting two totally independent medical opinions first. Two sets of MRIs, two PET scans, 2 long term EEGs, and because one hospital had to be EXTRA, we also got a MEG scan. Anyways, thankfully everyone was in agreement and it was time to cut 💀 We opted for the laser ablation method here at our home hospital (CHOC) and shortly after the procedure, we said goodbye sucka to those night time seizures … Those episodes were actually focal seizures that would generalize across his whole brain. The surgery was effective at stopping the secondary generalization. Nowadays Owen’s epilepsy is responding well to treatments, he doesn’t have total control or even long lasting control, but we’ve spent the last 2 years enjoying back to back honeymoons from every drug we’ve tried. If this is stability then I guess I’ll take it. I no longer go to bed bracing for the electric devil’s visit but we do continue to fight LGS all day every day. It’s relentless and with an upcoming hospital stay and 2 outstanding genetic tests, even stability looks like insanity 😵‍💫 — — — #epilepsy #seizures #infantilespasms #epilepsywarrior #epilepsyawareness #developmentaldelay #disability #intellectualdisability #lennoxgastautsyndrome #autism #specialneeds #neurosurgery #neurodiversity #inclusion #disabilityadvocate #hollandtribe #epilepsysurgery #TeamOwen #OwenStrong