The weekend was a mixed bag. No photos! I’m not very good at photos anymore. We had a lovely Friday night with Mike and Sofie where we went out for ramen at Pike and Rose and then Sofie and I spent the rest of the evening playing the cooperative board game Pandemic (all the players against the pandemic) which I haven’t pulled for many years given that we were living it in real life and I did not need to play a game of it. And I thought it might still be a bit early for it, but Sofie wanted to play and I had forgotten the rules – it’s a fun game and as was appropriate, the pandemic won and we lost – but even after we lost, we kept trying to play to see if we could win until it was nine pm and we were both tired and gave up and went to bed.
On Saturday, Edda seemed a bit agitated and flushed upon waking, but she had just started her period and seem to recover a bit by lunch. Jeremy was out on a 6 hour bike ride, I was home – working, paying the bills, etc. Eliana was here minding Edda. Edda at first refused lunch, but I gave her a Motrin and she took a long nap and Eliana managed to feed her her entire lunch before she left at 3 pm.
Jeremy got home, triumphant in his over 100 mile bike ride and settled into make dinner. Edda and I were at the table waiting for Jeremy to bring out the food when we both saw her go into quite a strong seizure – the first daytime seizure that we’ve seen in a few years. She appeared to have been biting her tongue repeatedly and so we held her until she calmed and then let her rest while we ate dinner. She, obviously, did not want to eat dinner, but we tried to coax at least her seizure medication down her which we were mostly unsuccessful in doing.
On Sunday, it was just the three of us (four if you include Elka) and we probably spent 4 hours trying to feed Edda mostly trying to get the medications into her to try to stave off any more seizures. Was it an injured tongue? Did she have a sore throat which was what I thought was happening before the seizure? Was she just in an uncooperative mood? Unclear. We managed to get the morning meds into her after a few hours. Lunch, I kind of offered a bit, but gave up after a while. Dinner – we had DC Martins dinner at our house – and Edda was still reluctant to eat until dessert when she enthusiastically ate the cake and ice cream and then went backwards to eat the main meal by the time everyone was ready to head home. I was happy that she ate most of the meds and then ate a full meal and then as I was getting her ready for a shower, she pooped. So, a triumphant Edda day – post seizure recovery.
Both Jeremy and I agree that the seizures are changing a bit. It used to be that there was no aura before the seizures and this time, I felt like it was an all day aura that was trying to tell us that a seizure was going to happen. She does get a few seizures at night and Jeremy pays more attention to those than I do and he reported that he now does often see the entire seizure because Edda does vocalize a “warning” now whereas before he often only saw the tail end of the seizures.
I have a feeling that either the nature of the seizures change or else the meds lose their efficacy after a bit, so I sighed thinking that we may have to change the meds that she’s on soon. I don’t want to do this while we are initiating the Daybue medication, but it may be what we have to do.
I’ve been in touch with the Daybue company and we’ve filed all the paperwork to trial it. We are just waiting to see what insurance will approve.
Other than the Edda seizure – I had a nice weekend. I worked a bunch, I played some music, I did laundry. It was raining, so not much to do outside. I’m actually a bit bored. I’m waiting to see what is next. I’m trying different things until something sticks. In the meantime, I’m trying to enjoy being less busy.
Oh, I’m so sorry to hear that Edda’s seizures are so unpredictable. I wish you good luck in trying to figure out a solution. It’s such a challenging condition in the best of circumstances.
The seizures sure sound scary. I am sorry that she (and you and Jeremy) have to go through such things.