The Monster Eludes Us

Great news: The monster is hibernating or at the very least not getting any bigger or, even better, may not be there at all!!!

Jack saw the neurologist today. We set out this morning at around 8:45, about an hour before the appointment. We arrived in the waiting room which was familiar this time and less scary, for me at least. Surrounded by children living with and surviving such things as head traumas, brain disorders, unknown problems, and so on, we watched Beauty and The Beast until being called back to the examining room.

Last night and today, I was worried. Flipping through worst case scenarios as not to totally fall apart in the off chance we were handed bad news today, I felt exhausted. Over the past several days, I hardly thought about it at all. But NeuroEve and NeuroDay are a whole different ballgame.

Anyway, we got in to see the nurse first and she examined Jack briefly asking us some basic questions while flipping through his chart and MRI results with a very serious look on her face. Then she smiled and commented on the extreme cuteness of our baby. Then she left and Susie and I played catch with Jack. He laughed hysterically as we waited. It was all I could do to keep from jumping out of my skin. Waiting....ahhhhhhhhhhh!!!!!

Trumble walked in and commented on how it definitely didn't sound like a sick baby was in the room. Somehow this was a relief even though he had said nothing yet about Jack's status. Then he asked if the nurse had mentioned that the MRI came back looking good. We said she had not said anything. He then said that it had indeed. Before he could speak, I interupted and I asked what exactly this meant, as if he wasn't going to say anything else and leave. He went into a quick discussion about the prognosis and process of forming an opinion. Basically, he said the following:

First, we were attempting to diagnosis with the first CT scan and MRI in February.

Next, we were attempting to confirm stability (no growth of the cyst or brain damage/developmental problems) with this MRI and follow up.

Now, we wait 3 months and do another MRI to check that there is continued stability.

Then, we do yet another MRI 6 months from then, then 12 months from there, and 24 months from there.

This basically means, we will be monitoring him for the next 45 months or nearly 4 more years. He will be almost 5 before he is considered to be in the clear, even though this will never be absolute.

If at that point there has been no change in the area that appears to be a cyst, it will be assumed that there may not be a cyst there at all and, in fact, just a space left by an abnormally shaped right parietal region of the brain. This would essentially mean nothing, according to Trumble, in that many people have brain disparities from the norm in shape and size and don't even know it. Further, because he was born with such a disparity, it is, according to Trumble, going to have a zero effect on development or ability as the rest of the brain will compensate fully for any inability of the right side to perform, if this is even the case.

If there is a change in the space above the right parietal region of the brain, then this would mean there is a cyst and that we may need to consider operating but not definitively still.

Essentially, barring going into Jack's head, there is no way to know for sure if there is a fluid filled cyst in the space indicated on the MRI or simply nothing but space above his brain due to a mishapen brain.

Monster or no monster at the end of this book...still to be determined.

I have added pages from the Grover book about "The Monster" to all of my past entries about Jack's Monster...more to come but that's all for now. Flip back through my past entries if you want to see my favorite book about a puppet that some would say has similar coping skills to myself...Susie!