Amist the land of blogs, a real life happening. For miss Ivey that means mornings at preschool and dances with her daddy and the never ending saga of life with epilepsy. This battle, among the many others she has faced and triumphed, is a nagging thorn in her side. And in the past two months they have renewed our friendships with many of our favorite nurses and doctors in the ER. So at the beginning of January, she had a MRI and CT scan, both of which came back with information not found in previous scans. So a video EEG was scheduled for next week.
Really? You mean we get to schedule being in the hospital for several days, make plans, line people up to take over the boys, etc, etc. Oh that's right we are talking about Ivey....better to fly by the seat of our pants.
So here we sit, day three at Scottish Rite.
Monday her seizures went completely weewonkee, and we earned the grand prize. A trip via ambulance to Scottish Rite. Well, at least I didn't have to drive.
Today electrodes were glued and gauzed to her head - along with this sleeve-like thing covering the gauze, add to that tape around the sleeve thingy. She still managed to half-way take the sleeve-thing off. She will be monitored (EEG) for the next couple of days. A couple of her seizure meds have been reduced, and for the first time ever we are actually hoping for seizure activity.
Now I need to let all those people who graciously agreed to help us next week know that we are issuing a rain check. We are here this week instead.
I'll update more when there is a chance -
And the glory of time in the hospital....I have full control of the TV remote.
I miss my boys back at home (I joyfull do not miss sharing the remote, watching Disney) but I reaaly miss them. Sweet dreams guys.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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4 comments:
So sorry to hear that Ivey's seizures have picked up. Prayers that they'll see what they need to on the EEG and figure this all out ASAP.
Thinking of you all, epilepsy is awful.
ok..so are these the tests that you were going to do next week anyway? When are we going to celebrate your BDAY????
Praying for you guys, Hope God will allow you to find out some good info, and then a way to better help/stop the seizures. By the way the date with dad is Priceless. So inspiring!!!!!
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