Masinja had another boring day. He was awake for a while, and was looking around, and went back to sleep. He was completely knocked out when we saw him last night.
Madelinja had an exciting day. She was wide awake during our last visit of the day, and had a good grip on my hand for about 30 minutes. She was very aware of her surroundings and looking all over. She even noticed when people were walking on the other side of her. It was nice to see her so wide awake and almost playful.
They both had eye exams today. Masinja looked really good and won't need any followup. Madelinja will need another exam in 2 weeks. Her eye drops were stopped today, too.
They also had cranial ultrasounds today. Masinja's ventricles were still enlarged, but were the right shape, so the doc is thinking he's doing well, and might not need a shunt. Madelinja on the other hand, wasn't looking as good as her brother. The left side of her brain did not look right, and the doc is worried about significant neurological problems later on. We don't know exactly what that means, but we'll have to be prepared for just about anything. We're hoping that it doesn't greatly impact her quality of life, but I guess we'll see what happens.
Lastly, we talked to the doc about Madelinja's vent settings and it seems she has chronic lung disease. We're not sure if that means she'll need to be on oxygen long term, or what, but that's probably why she's having a tough time getting off the vent.
That's all for today.
Peace,
T.M.
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