Some Levity Please

I have always been one to find humor in most things. The problem with that is there are certain things in life in which humor should not be found. With that said, I have been looking over the blog about Grant and have noticed a certain clinical coldness to the entries. They are very matter-of-fact. While there isn't much funny about this situation, there are times I have to sit back and laugh at certain things. Things such as when Grant will run up to me or Rylea or Cole and hit us on the back or arm with his hand and say "Hey" and then run off make me laugh or his reactions to certain things like the lights going off or loud noises. Despite his issues, he's still a little kid and kids are just funny. 

I have realized this tone has come from the numerous conversations I have had with the doctors. I will say, out of all the doctors we have met and/or talked to, neurologist seem to be the most matter-of-fact and straight to the point. I feel very awkward making small jokes (usually out of my own nervousness) to or in front of them.

The tone has also come from the clinical papers and studies I have read (and tried to understand) in an attempt to learn more about Grant's condition, prognosis, and any future outcome. The doctors seem to be a little reluctant to give us any hint of what the future may hold. I believe this is because we are still very early in the process, and they still don't have any real answers beyond he is having seizures, he has cortical dysplasia, and the cortical dysplasia is most likely causing the seizures. There I go again, being very matter-of-fact. 

So to bring some levity to the blog and situation, I will try and add a little humor where I can (without being too insensitive).To start off, here's a little anecdote; a little while back, when we first started to give Grant's doctors weekly reports on his seizures, I started singing a song from one Cole's cartoons but changed the words. The song came from the show "The Octonauts" and at the end of each show, they do a creature report. Well, there is song that goes with it (click here to hear the song). One day I changed the words from "Creature report" to "Seizure report." Cole thought this was funny and now whenever we see Grant have seizure that isn't too serious (one where he doesn't hurt himself or cry afterwards), we sing the song. This is partly to remind us to write it down, and partly to not scare Cole too much about the whole situation. 

In the future I hope Grant can be able to laugh at this when appropriate. Actually, I hope that in future, I can look back and ask Grant, "Remember when you used to have seizures?" and he looks at me says "No dad, I was like 2 years old, I don't remember anything from when I was 2."

A Change of Plans

It has often been said that the only certainties in life are death and taxes. I would like to say there is one more: change. Whether you like it or not, change is always a part of life. It can help you and it can also hurt you, but it is still there. I bring this up because some things have changed.

In the last paragraph of my last entry, I mentioned Rylea will be taking Grant back to Cincinnati Children's Hospital (CCH) for a VEEG and some other tests, well, that has now changed. We have been giving our epileptologist weekly updates on Grant and his seizures. This is because he has been adjusting Grant's medication and trying to figure out which will work the best.

A short side note on medication for epilepsy. During our initial visit to CCH we learned that with any epilepsy, the first medication used works 50% of the time, the second works 15% of the time, and third and any subsequent medication works 1%-5% of the time. Grant is currently on his 4th medication. He started on Keppra, then supplemented with Klonopin, then started on Topamax while the Keppra was being phased out, then started on Depakote while the Topamax is being phased out.

With the percentages mentioned earlier in mind, the epileptologist has diagnosed Grant with intractable epilepsy: seizures that do not stop through medicinal treatment.

This sounds like bad news but it is something we expected. We had hoped that the medication would stop the seizures but had a feeling surgery would the be end run. Fortunately,  patients with cortical dysplasia tend to be good candidates for surgery.

So here is the change of plans. Instead of Rylea taking Grant to the hospital for one day for the 24 hour VEEG, she will check him on the Monday after she arrives in Cincinnati and he will have a 5-day 24/7 EEG. During these five days at the hospital he will also have a battery of tests conducted. These tests include a detailed MRI, PET scan, Ictal SPECT test, and a  MEG scan. For more information on what these tests include, click here.

The week following all these test, and after the results have been analyzed, the epileptologist, neurosurgeon, and about 20 other neurologists and neurosurgeons will get together and discuss Grant's case (if you have ever seen Grey's Anatomy, this will be familiar). During this meeting, they will discuss if surgery is an option, if so, what type, and who will perform the surgery. Once all these are decided, Rylea, Grant, and I will have an appointment with our epileptologist and the selected neurosurgeon to discuss the outcome of the meeting.

So in the end, life always has change. We often have to go through the change to know whether is was a good change or bad change. Even then, it may take quite a bit of hindsight to know. Life with Grant since we found out about his epilepsy has been a constant with change. The only thing I can say about it is that struggles are only struggles if you make them that.