Note: I started writing this post nearly 6 years ago. I revised, revised, revised for all these years. I almost posted it so many times and stopped myself. I continually ask myself “what is the end-game here? What is my goal?” and I understand how emotionally charged this topic can be. Possibly better than most...
Omg you guys. Oh. Em. Gee. I have had one helluva few weeks after recording what you’re about to hear. Did you even know that there’s a difference between pain and suffering? And that one is healthy while the other is not. And that one can even alter your future AND you perception of the...
I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!) Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…” “Her…what?” So...
I’m such a rubbish blogger! It’s been 4 months since I posted about Grace’s video telemetry EEG test. Naturally it took a couple months for doctors to read the results and come to some conclusions. We saw our Neurologist a few weeks ago who explained the results in plain English and here are...
This week Grace gets the prolonged EEG I’ve been requesting for a couple years. This is how is goes down: she hangs out in a hospital bed for a whole week (fun) with a camera fixed on her and wires on her head. So it not only records her brain activity, but also video of...
Note: a week after writing this letter, Grace was approved for her eye gaze! I have no idea or proof whether the letter had anything to do with it (since no one it was really directed to even responded). But hooray! And now to get her one for home… “A Well-articulated understanding of legal protections...
If you follow Rett research closely (or maybe even loosely), this will be a drug name you’re familiar with. My Google analytics tells me it’s one of the most popular searches currently bringing people to this blog so I know you’re out there and looking for information about this potentially groundbreaking new medication and the...
