No EEG for now

Isa had an appointment with her neurologist Eva yesterday, last time we saw her was sometime in May. There was no room available for her check up so they sent us upstairs to the children ER, the neurological department, right where Isa was hospitalized almost a year ago, when all this started and Eva would meet us there. I had this familiar feeling right at the moment when I crossed the entrance, I tried to look into the nurses room trying to see some familiar faces. Despite the awful feeling of being there for a week last year with Isa, the medical attention she got was really good, and everybody working in that department was really kind to us. We were sent to an office to wait for Eva and I had to go to the toilette as usual (pregnancy stuff :)) I walked through the room Isa had last year and I saw this young couple coming out with their baby, maybe around 7 months, the mum looked probably as I looked a year ago, worried, tired and carrying her child with her love pouring out from her body, I felt like stopping and giving her a hug, but I didn’t.

We finally got to see Eva and got to talk about Isa, everything that has happened during this 7 months that we haven’t seen her, she asked about her eating after looking at her weight gain charts, we explained that she is eating better and she actually put on some weight but then was sick for almost a week and lost weight again, but it seems to be doing better with food anyways. We talked about how she has been seizure free for 8 months and how happy we are about it. We thought she was going to schedule an EEG but she wanted to wait until spring, Nicklas asked her again to do one so we could see how her brain activity is since she hasn’t had any seizures for quite some months, but she said she wanted to wait one year, then she would schedule one and depending on how it was looking we could maybe start decreasing the medication, but she wanted to wait first until she had been seizure free for a whole year. She will also send us to a dietician just to keep an eye on Isa’s weight and maybe get some of those nutritional shakes so she can drink those if she is sick and doesn’t want to eat anything else. Overall it seemed that Isa is doing very good and moving forward it was nice to leave her office feeling this good.

Isa also had an appointment with the eye doctor on Tuesday, she’s having another one at the end of January, basically it seems that she is only squinting with her right eye now, so she is gonna be wearing her eye patch only on her left eye, 30 minutes a day for 6 days a week and we will see how it has improved in 2 months. Her eye glasses are getting small and she has started to take them off a few times a day, but we have to wait until the next appointment to get a prescription for new ones. I love her with her eye glasses, they are just a part of her, but they are probably a bit uncomfortable for her now.

She has been feeling stronger this week again, every time she gets sick it takes like a week until she is strong again, but we are getting there.

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