ROUGH AFTERNOON WITH SEIZURES

Today Emmalin had 4 of her "big" seizures. I hate it when we have days like this! Yes, there are MANY people who have it a lot worse, seizure wise, than Emmalin, but for us, this was a hard day! You see, if we have 3 days in a row where Emmalin has seizures (the same amount in a day or the same times in a day) at the same time, in some way, and then I consider it our "norm". I know this doesn't seem like a long time before it's our "norm", but with Emmalin, her seizure types and amounts are constantly changing! It just comes with the territory of CDKL5 (at least for us anyway). Here lately Emmalin had only been having 2 "hard ones" a day and we have been pretty okay with that. Emmalin also has head drops and sudden jerks that are seizures, but as bad as it sounds, I don't even count those in her "grand total" at the end of the day. I know this may sound bad, but it's just the way it is.

Anyway...Emmalin had her 1st seizure today around 6:30am and then her 2nd one ended up being around 11:00. This one was a surprise because she had been only having 2 a day, one in the evening and one around 2:00pm or 3:00pm. Emmalin had to sleep a lot after her second one and that's very typical right now. So because of that seizure, we Emmalin had to eat lunch around 2:00pm (because of her sleeping so much), but she wouldn't really drink anything, which isn't normal for her. I should have realized that she wasn't feeling well right then, but played it off being from her molar that she is cutting and went on with our day.  We then had to go run some more errands and then when we came back, she had her 3rd seizure around 5:15pm. Every time Emmalin has more than 2 seizures in a day, or if she's had 2 pretty close together, Emmalin doesn't normally feel good for the rest of the day (unless she has like 4 hours or so to "sleep it off"). Well, after Emmalin's 3rd seizure, she just didn't feel good, and her body kept having a lot of big jerks (poor thing). So Jarrad and I "through our plans out the window" for the evening and I just held her. She would try to relax (and go to sleep) and then she would jerk again and it would just make her wide awake again. I felt so bad for her! Then around 7:00, Emmalin had her 4th "big" seizure. Sometimes I wonder if she can tell that another "big seizure" is coming. I know today she just didn't feel good after her 3rd one (but who would) and this is pretty normal after a third. At that point, whatever it is that we have planned for the rest of the day we have to cancel and get Emmalin back to our house so that she can sleep or just be held and rocked the rest of the day. You just feel so bad for them as they have to go through all of this! Again, I realize that there are many people out there who have it worse, but knowing that still doesn’t' make me feel any better while I have to watch my baby have these bad afternoons. I HATE SEIZURES!!! After her 4th seizure, I got her jammies on and then Jarrad and Emmalin cuddled and fell asleep in the recliner. The best part of my entire day was watching the two of them together asleep in the chair. I know that may sound strange, but seeing them like that, made my day a little better.  That's Emmalin and Jarrad's thing, getting their cuddle time in after dinner and Em's bath. I have to say that Emmalin is very lucky to have a daddy that loves her so much!

I feel like I need to say, as rough as an afternoon/evening that we had, we have definitely had worse!!! And when I go to bed, I will always thank God for Emmalin only having 4 seizures (or however many she had that day) instead of 5. Like I always say, it could ALWAYS be worse, we've had worse days!!! And I feel very blessed to be at the point where we have a diagnosis and Emmalin's seizures are down to 4 big ones on a hard day.
God is SO good!!