I'm not a big worrier. Okay, maybe I am. I'm pretty good at taking life as it comes, but over time I've realized over and over that we have really, truly, deeply hard and helpless challenges in our lives sometimes. There are many things that have happened in the last year that have weighed on my heart and mind. Many times when my thoughts were so consumed with sorrow, whether for someone else or selfishly for myself, that I went through the days in a bit of a haze. Through these times, I've also been incredibly blessed to feel peace and love, and I'm immensely grateful to know my Father in Heaven is mindful of me.
This week, James had a routine MRI. We've been excited for this one for the last couple of years, because we felt it would confirm to us what we believed about him - that he'd "grown out" of the hydrocephalus. We thought the aqueduct in his brain that was blocked or not fully formed had spontaneously healed or opened up, and that was why we were seeing him succeed so well in the rest of his life.
Obviously, I'm using past tense up there. What we thought isn't what happened. When going over the MRI with the doctor we found out a few important things. One, his aqueduct is still blocked and not allowing fluid to pass into the fourth ventricle. That was a disappointment. Two, his shunt is "shallow" in his ventricle.
This is a generic drawing of a child with a shunt. You can see how the shunt sticks well into the ventricle (the area with the "water" in it) in order to collect fluid and drain it into the abdomen. In James, that part of the shunt is near the edge of his ventricle. In fact, Tyler described it like this : there's the C shaped ventricle, and then an area kind of like a canal that is a path to the shunt. That canal is maintained by constant pressure from the presence of the cerebral-spinal fluid. Without the canal, the shunt isn't in contact with the shunt. So, basically what this means is that easily, and who-knows-when, the shunt will fail.
We've unfortunately seen from a distance what this means for other children with hydrocephalus. The symptoms of shunt failure are horrible, in that they are so normal - headache, irritability, vomiting. And sometimes not even those symptoms appear - sometimes all a parent has to go off of is just a feeling that something is not quite right. So, in other words, diagnosing a shunt failure is not easy. And then comes the treatment.
All in all, I'm very aware that we are incredibly blessed - James has no seizures, no measurable developmental delays, no current health issues, other than being a few pounds lighter than his 11 month old brother. But, I am also disappointed. I'm sad for him that he has a lifetime of struggles with all of this stuff ahead of him. I think without realizing it I got ahead of myself and started to think just a little bit that this would somehow all go away and just be a non-issue for him. And that was wrong.
On a lighter note, James is absolutely amazing. He was so excited to have to go to the hospital. He was asking about it for weeks! He even told me he was going to stay there forever, and only agreed to come home when I told him if he did that I would be so sad I'd cry. He headed out on a pretty empty stomach early in the morning with Tyler, all lit up and thrilled. They traveled to Phoenix through a snow storm, even stopping to help dig someone out of a snow drift. They got there a little late, but as James was being put under, he was still calm and happy and tapping his hands on the table under him, left, right, left, right until he was asleep. Finally, after the MRI, and later, the doctor appointment, James was able to eat, and got to go to Panda Express. So fun! And then they even got icecream on the way home! He totally deserved it. He's just an angel. And so smart and so good.
Also, the next day, he decided he was potty trained. And that is that.
What a kid! I sure adore him.