Yesterday was a flood gate of emotions....pretty common for this house hold! We met with neurosurgery and they were so very impressed with PJ and how well he is doing developmentally...he is really thriving right now which I can't get enough of seeing. I actually am feeling a little bad because my other two young ones are lacking a little of my attention during the day. Still really trying to work out some sort of balance.
They also informed us that pathology came back as cortical dysplasia ll b, which was a relief because we were told that it was likely more then just one type in there.
I did bring up my concern with his face starting to flush again and him twitching again (the twitching has slowed down a lot but is still happening) during nap and bed time like he did before this surgery. I brought up that I knew the brain was healing so I was hoping it may have something to do with it. I was quickly told that those symptoms weren't healing related but were unfortunately signs of seizures. Deep down I knew that the flushing wasn't good. I even watched him do it a couple of times right after surgery....use to though, most of the time, (before the surgery) this flushing and twitching would lead to a full on tonic clonic episode....so I thought in the hospital he was going fall into a big episode but once he didn't and the redness faded I had hope it was nothing...I was in a bit of denial with it all..I think, even though I didn't admit it openly, I had loads of hope that this would be it even though I repeatedly said "I'm not very hopeful".
Now we are waiting for him to heal some to see about a third surgery. They told us they typically wait a bit before they go in again--not things we wanted to have brought up after we all successfully survived this second round. This dysplasia will only get worse again though if it isn't all removed, so we got to do what we have to, to give this little guy the best life we can. At this point it is being seizure free and try and reduce the ample amounts of zombifying seizure medications he is on. As of right now we begin waiting again---waiting for harsher seizures, waiting for doctors phone calls, waiting for appointments, and waiting to have our little boy be healthy, happy, and rid of cortical dysplasia. He will get through all this!