A little piece of heaven

We were at a party this weekend and a little boy came up to me and asked, “Is that the little boy with half a brain?” I was proud to announce that yes, this is the little boy with half a brain. Except now we know that he has a bit more than half a brain. Way to go Nathan!

And I thought…hmmmm…what a great title for a book.

Lately I have been in contact with several mothers who have young brain injured children. It made me remember those early days where you still don’t know enough and you are handed this child that you want with all your heart to help but don’t know how. My heart goes out to them, I wish I could fly around the world and support them, listen to them, share some of our experiences. I wish they didn’t have to go through all of the things we went through. That, through our journey, we could make things better for them, and their kids. But of course that is not realistic.

Which has made me return to my idea of a book. Maybe instead of writing a biographical book, I should write a more fact-based book about what we’ve learned. Present a list of alternative therapies, talk about brain plasticity, talk about different toys, technology, how to deal with state and other agencies.

In any case…I’m proud to be the mother of this boy with half a brain. With just a little more than half a brain, he has accomplished so much! What he lacks in brains he makes up in spirit (and in looks, of course!).

So what do you think of “The boy with half a brain” as a title for a book?

I realize I’m always talking about Nathan’s shunt but until today I didn’t even know what type of shunt he had, or anything about how it works. So I did a little research and found a cool video:

Codman programmable valve

Just in case anyone has any curiosity about what a shunt is, what it looks like, and/or how it works.

Apparently Nathan got a really good one, as it has 18 different settings and is very adjustable.

Nathan had an MRI this morning. It was requested by his doctor for several reasons: 1. to check the status of the shunt and look for signs of over and under-drainage. 2. to check for other potential problems that weren’t seen at the time of the first MRI due to hydrocephalus. 3. to check for brain damage from the hydrocephalus and meningitis. 4. to see how his brain has developed over time

It was a terrifying experience as Nathan hasn’t undergone any surgeries or sedation since he was 5 months old.

The good news – everything went great! We arrived at 6:30 am on the dot, and Nathan was in the prep room by 7 am. They got the IV in on the first try, which is virtually unprecedented. By 7:30 the anesthesiologist came in and gave him the IV sedative. I was holding Nathan in my arms and talking to him when the IV went in. Within SECONDS he was asleep. It was incredible.

The procedure lasted 45 min’s, at which time they called me so I could be there when he woke up. By the time he opened his eyes, I was right by his side. The nurse said they don’t remember what happened. So in his mind, I never went away. The 45 min procedure never happened and he probably thought I was holding him the whole time. I gave him juice and we sang songs while he fully regained consciousness. Then within the hour he was able to eat his breakfast.

We then had to wait about 3 hours because the neurosurgeon had to reprogram the shunt. Because the MRI is a big magnet, it mess up the shunt settings. So they have this little tool, it almost looks like a circular ruler, that they place over his head where the shunt is. Then they have to click a button, and zip, the shunt gets reprogrammed to its ideal setting. It was amazing. Unfortunately they didn’t have the right tool so we had to wait 3 hours for them to find it. But Nathan ate, chilled, watched TV, and was completely happy the whole time.

We got home at about 12 and it was almost as if nothing had happened. He had a long nap and was his normal, happy self all afternoon.

I picked up the disc from the records department and by 3 pm was on the phone to his neurologist. Here are the findings:

1. His brain has expanded considerably since the shunt was placed

This is from Nov 07

This was about as close as I could find in terms of view so you could compare apples to apples. It’s miraculous how much his brain has grown and expanded. It’s amazing!

2. He has had no further injuries to his brain. There is no evidence of bleeds or any further complications other than the original malformation.

3. The cyst in his occipital cortex is now much reduced in size:

Nov 07

The white part in the middle is all empty – that’s the cyst. It was almost all cyst. Now it’s just confined to that one portion of his skull.

This is about as wide as it gets now:

I thought it looked like an error with the MRI machine as it’s such a perfect little hole, but it turns out that the cyst is just not fully gone.

I posted all of the MRI photos if you want to look at the comparisons:

Old and New MRI’s

If you ask me, I think this shows that miracles can, and do, happen. The expansion and regeneration of his brain is amazing! It gives me hope.

Thank you so much for keeping Mr. Nathan in your prayers – they worked! Everything went so well! THANK YOU!