It’s been almost six weeks since he had his surgery. Today he had another MRI and a follow up appointment with a neurologist. They both went well. There are still a lot of unknowns, but there are also a lot of things that have become clear to us. We learned that he definitely has porencephalic cysts (so, Porencephaly), and he has had them all along. The new MRI showed that he has four, and the neurosurgeon who did his surgery was able to connect two of them with the shunt. So two of them are draining and showing improvement, but two of them are going untouched right now.
Apparently it’s pretty incredible that they were able to get two cysts on the first try. So that’s awesome, and we’re pretty thankful for that. But because of the two that aren’t draining, he needs to have another surgery. What his surgeon will do this time is go in with a camera through the same incision, and poke holes in the other two cysts so that all of the cysts will connect and drain through the same shunt, rather than having to put multiple shunts in.
The surgery is set for April 11th. We wanted to have it done sooner rather than later to give Remi the best chance as far as his development is concerned. We want the extra fluid to be taken care of so his brain can do what it needs to to heal. We don’t know that it has slowed his development necessarily, and we won’t for a while. This is all still a waiting game. So that’s that. We didn’t get bad news, and we didn’t really get good news — we kind of just got news.
As far as normal life is concerned, Remi is doing really well. He’s been a lot more alert lately and he smiles all the time now. He also likes long walks on the beach and watching the sunset. But really, we love him and he’s a really happy baby. Thanks to everyone who’s kept us in their prayers and been so supportive. We truly appreciate it.