Part of Weslee's setback involved leaking brain fluid, pressure behind his eyes, missing memories, and loads of missed time plus confusion. CT scan showed normal but what is confusing the neurosurgeon and epileptologist is the leaking brain fluid. It is coming out of his 2013 incision, NOT any of his May 2019 spots. They stitched it up, and take the stitches out tomorrow. Then in 2 weeks, he will have an EEG done for 3 days at home, to see if any of these new weird symptoms are a result from seizure activity.
July 11
Weslee has had a bit of a setback. Had a CT scan today. Seeing his surgeon tomorrow.
July 7
This is one of the reasons that I haven't slept well since 2011, when Weslee had his first tonic clonic seizure. SUDEP. A very real possibility of death from seizures. I still check on him several times a night, especially with all that has happened recently. // As a side note, Weslee LOVES Disney's "The Descendents" and is quite upset the passing of Cameron Boyce. ( https://abcnews.go.com/…/disney-channel-star-cameron-boyce…/ ). // Please please help other parents sleep a little easier by donating to the Chelsea Hutchison Foundation). CHF supplies monitors and such to people who need them. Do it in your name, Weslee's name, or in Cameron's name... just do it. Today. Now. (Please visit www.chelseahutchisonfoundation.org to donate.)
July 5Today was Weslee's first appointment with a specialist opthamologist. Referred because his eyes aren't tracking correctly and because he has tunnel vision. Doc did a thorough exam and recommends he try special prisms in his new glasses, then take a wait and see. He was already partially blind from his first epilepsy surgery in 2013, and thankfully he's no more blind now. Hope to pick up his glasses by the end of the month. There's another problem, though. His head is still so swollen. We've order a headband instead of ear-pieces but it may not be enough for him to comfortably wear glasses.
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