GeneticEpilepsyJournal

So, let's continue... we left off on Daring having multiple episodes of not breathing in the middle of the night at home and we called 911.  Paramedics arrived and at that point, Daring was fine - heart rate and oxygen levels appeared normal from the brief eval they did to him. He passed some serious gas at some point while we were all sitting there and the one ambulance tech seemed to just accept that as what was going on, "Maybe he was holding his breath trying to pass gas?" I felt so foolish when she said that. Like I'm some idiot making a deal out of her kid having to fart.  I was feeling like a crazy person, but this thing happened! What was it? What if it happens again and I'm not awake to realize it?  I just remember the one paramedic looking at me and telling me we could go to the hospital - no harm in having Daring looked at ... and that's what I needed to hear.  We went by ambulance to the closest hospital. I remember Daring being put on the bed and ...

When Daring was born, I'm not going to deny there was a whole bunch of fear.  There was the fear I'd have him in the car - Hahaha! Baby #1 was so fast, she almost was... So I felt like there was a real likelihood of this happening with baby #2.  Then there was the personal fear that I'd seize again. In my last trimester with Daring, I started pregnancy/ baby safe anti-seizure medication in the hopes of avoiding another seizure after giving birth like I did with Darling. But he arrived safely, not in the car, and I didn't seize - all was wonderful. What a big, beautiful baby he was. Just perfect! Daring was born towards the end of May and in the first week of August, I woke in the middle of the night as a new mom often does. Daring was in a crib attached to my side of the bed and I remember looking at him, realizing his eyes were open and things went a little like this:  I thought "I don't think he's breathing" I put my hand on his chest. I put my hand ...

 So, it's been a minute.  I wasn't sure if this was actually helping anyone (so leave a comment if you've found yourself here or have a question).  I'm still not totally sure how much is too much to share...  And honestly, the thought of writing out about Daring has been overwhelming. Maybe because seizures are still so present and active and unpredictable with him. Maybe because his epilepsy is still unfolding? I don't know.  I keep a little journal of his seizures for record-keeping/ to try to make any possible connections of things we can do to avoid them and even that puts me back so heavily into them. Reliving them is hard. But here we are. This is important (?). So, expect some new entries soon.

So the last less than 48 hours have been nuts up to this point if you read the first part of this . It's now a little before 9pm that Wednesday night and Darling started to seize again . We called the discharge number for the ER that we were just at and Darling was just starting to come out of the seizure while we were speaking with the doctor we had seen. The doctor said he'd call over to try to speak to neurology at the main hospital we were scheduled to consult with. He said he'd call us back. However, before the doctor could call us back, well, here's what I wrote in Darling's journal: " you jerked up (from being asleep on my chest) & awake. You let out this awful yell noise, then your head started to turn like an owl's and you started to turn blue: freakin terrifying! We called 911 and took the ambulance back to the hospital we'd been at even though you were waking & getting your color back when EMTs arrived. Your other seizures were stress...