11/12/2022
Haven't updated on Lily cause she had been doing pretty good. A few weeks ago she had an episode in the middle of the night. I heard her choking so I went running in her room. She was unconscious choking on vomit. I didn't see any convulsing but she was unconscious. We (her neurologist and me) think that it was still a sezuire. So trying to ween her off that one med back in June/July didn't work.☹ They are not putting her on that one again but they increased her 💊Keppra dosage. So theres no chance of her getting off of any seziure meds anytime soon. 🥴🤷🏼♀️ The Neurologist said that her balance was getting better. She wanted to take her off the med that helps her balance. I was a bit nervous about taking her off that one. I was afraid she might regress if I took her off to soon. So I chose to keep her on it for now. She is still doesn't have very good coordination. Also she said during the test they did that she is showing motor atrophy with every movement again. They are not going to do an MRI just yet it may have been that night time sezuire she had it may not get any worse with the seziures controlled with meds. 🙏Praying it doesn't get any worse.
She still needs to gain weight. She was drinking nutritional drinks for a while. The appetite stimulate she is on stopped working like it was. She hadn't drank any of the drinks for a while. They increased the appetite stimulate. She started drinking the drinks better now again. Hopefully she will gain weight. 👍🏻
