We met with the lovely dr ch again today. All good news really; he's still pleased with her progress, though hopes for her to become completely seizure free- which we aren't, despite recently upping her doses of vigabatrin.
Mind you, her weight has increased significantly (6.15kg/ 13lbs 9oz) so therefore she needs more. She was on 500mg per day, but is now allowed as much as 900mg, so tonight I'm increasing to 600mg and hopefully that will sort her- at least for a while. I hate upping doses :0(
Her MRI has been reviewed (again). And she does have a corpus callosum! Though only a rudimentary one. But still that's better than nothing at all.
Her head circumference is below the 0.4th centile, which is a concern to me, but he's not as worried, nor surprised considering the brain anomilies.
We had to go for blood tests after. HORRIFIC is the only way to describe this. It never gets easier. They always try and get blood from her tiny veins in her hands, are never successful, upset her (and me) a great deal, and then resort getting it from her feet, which is equally difficult and timely.
Anyway, just a quick update. ... Hardly seem to get any chance at moment with chris and kids being off
Oh, had photographer cone to house earlier to take pics. Was nice and hopefully got some nice pics. Having photos taken is something one takes for granted, but when your baby can barely see, it's difficult to capture their attention and get them looking in the right direction.
1 week ago