Hello friends and family! As you can probably assume by the lack of posts this weekend, it was quite a whirlwind. Denver has been teething for a few weeks, and this weekend seemed to be a really rough one. Poor girl didn’t want to be away from her mama. She wanted me to hold her alllll weekend, and if I wasn’t she was making sure I was aware she was very angry with me. If Dravet were a person, it would be a narcissist for sure. Dravet takes something as normal as teething, and it needs to be a part of it. It has to make sure that you never get distracted by anything else- Dravet always comes first. So, Dravet reared its ugly head for Denney. Thankfully, no tonic clonics, but lots and lots of head dropping. ESPECIALLY after naps. It is hard for any parent seeing your baby teething and in pain, but you add these stupid little seizures on top of it and it’s a whole new level of hard.
Saturday Nova had a REALLY good day. During Denver’s nap we made gingerbread cookies. She was having the time of her life with the cookie cutters. We filmed a video of her talking to her friends that I will try and edit and upload soon 🙂
We cut out regular naps for Nova around the time she turned 2. She was having a lot of myoclonus after that would sometime lead to a tonic clonic. It just wasn’t worth putting her through that every day. But sometimes sweet girl just NEEDS a nap. When she is coming up to you saying “sleepy. tired. so sleepy” and putting a blanket over us- it’s hard to not let her have one every once in a while. Well, yesterday she had been asking for a nap since 10 AM. So, I gave her one, and sadly yesterday was one of the days it turned into a tonic clonic. It was very short, but very aggressive. Her seizures are just so hard lately. They are so violent, and they knock every bit of energy out of her. She slept for about an hour after and then she was doing pretty well the rest of the night. Today she is pretty cranky-side affects of rescue meds. I’m hoping we have a good week this week.
We love you all so much,
Addi Epilepsymama
