This afternoon we had Giovanni's 6 month follow up with his local neurologist at the medical center. Since so much has changed developmentally with Giovanni over the past 6 months, much of our time was spent talking about his progress. While he has obviously made some great progress, the gaps that exist between what is expected at his age and what he can actually do are starting to widen. This has been a very hard thing for me to acknowledge because doing so would make me have to accept that this isn't something that he is going to outgrow. I obviously "know" the reality, but having to talk about it is quite painful.
One of the hardest things for me to swallow today was the fact that Giovanni is still in fact having seizures, despite the medication. I so badly wanted to believe that what we were seeing was just "Giovanni-isms" (as I refer to some of his quirky behavior) and not seizures. While I knew deep down that they were, there was just a part of me that was praying to God I was wrong. The neurologist gave us the choice of upping his current medication and giving that some time, or switching him to a completely different drug. We chose to keep him on the same med for a number of reasons. First of all we know how he reacts to it and it requires very infrequent blood work (which he had today). The other part of it is the fear of failing medications. When we last saw the neurosurgeon he said that generally they allow a child to fail two medications before considering a frontal lobe resection. Changing medications, to me, is accepting that the current one isn't working...which would be a failure. I would much rather go up as much as we can with his current drug before we throw in the towel. These seizures are one of my biggest fears.
The other interesting discussion we had today was around the severity of his speech delay. I am a very scientific person so I know that most speech comes from the left side of the brain. The heterotopia and the porencephalic cyst is on the right. While poor speech development is quite common with the heterotopia and Porencephaly, I wanted a clear cut answer as to why this is. His neurologist said that the most likely explanation is that there is heteretopia on the left side as well that wasn't picked up on the first MRI as the lesions may be very small. We could obviously do another MRI to try and confirm this, but we are not going to pursue that at this time. We will be going back to Children's Hospital in Boston for our annual appointment so I will see what they have to say as well.
Time to shut my brain off for the night...