Sorry for the lack of update. It's been a bit frustrating around here lately.
The Keppra did not work for her seizures at all. We went back to the neurologist and we're going to start Depakote (which I really didn't want to use) and wean her off Keppra. Our plan is also to admit her to the hospital in December to start the Ketogenic diet. I really didn't want to do that either. We've run out of options though. The Keto diet has a 50% chance of reducing 50% of her seizures.
Then we went to her GI dr. She has been puking pretty much every day for the last 16 months. So, we put her on an elemental formula called Elecare. So far, she hasn't thrown up yet. Unfortunately, that's very indicative of a food allergy (even though we trialed no dairy and no soy before, it must be something else). If it IS a food allergy, we can't do the Ketogenic diet. Which sucks. Aside from surgery, it was our last option. The surgery has even less chances of working for her.
Also, her feeding issues have gotten so bad, she's on a continuous feed of 45 ml (60ml is 2 oz) an hour for 23 hours a day. Even on the Elecare. Her gut just hates her or something, I don't know.
We were able to buy the awesome special needs bumbo for her (www.childrite.com if anyone else wants one for their SN kiddo! It's great!) since it was on sale this month. I got some photos of her in it that I'll add to the little gallery. It's so neat and she loves it. It's HUGE and will hopefully work for her for at least another year or so. Maybe longer if she gains more head control. The first day we got it (just last week), I put her in it and she sat, smiling and laughing, for an hour and a half. I took her out thinking she would be getting tired and she started crying, wanting back in. I put her back in and she just was so happy. I'm sure it's great for her to be at the same height as her siblings when they're sitting around and playing.
Lily also has been hit with her first ever ear infection. Poor baby is in so much pain. She's on ear drops, but I'm also using garlic ear oil as it seems to soothe her a lot. She has an ear canal infection (swimmers ear), so we have to be ultra diligent to not let water in her ears from now on. It's common for kids with microcephaly to start getting ear infections around the age of 2 because their body is outgrowing their head and the ears just can't work properly anymore.
Lily and Dakota are going to have a little photo session with just the two of them soon, so I'll upload some of those photos when we get it done. I'm excited for it.
