There and back again

It has been a while since I have given an update. There are many reasons for this; 1) I am a little lazy, 2) With three children including one with special needs, the blog isn't at the top of my mind, and 3) recently, I haven't really felt like sitting down writing it.

This isn't going to be a pity party, but writing this blog and rehashing the events of the struggles and triumphs in our life with Grant can be and is emotionally draining. People have often said to Rylea and I "I don't how you do it. How you handle all this." Our reply is usually "You have too, what alternative is there?" or "You just take it one day at time." That's just it, we take one day at a time, but to look at the situation as a whole, with the enormity and complexity it presents, is difficult and almost impossible. So, having to look back at the days that have gone by and the ups and downs that have happened becomes equally as difficult.

I knew some of this when I started writing this blog, I knew it would be difficult at times, but I also knew this blog would help, not only with raising awareness about epilepsy, but with us as a family getting through this. It brings a sense of catharsis (at least for me). So thank you for reading and sharing in our struggle.

The last post was at Thanksgiving and I had planned to write one around Christmas, but got a little busy. Rylea and I bought a house which we closed on in early January. So Christmas was a little chaotic. It was a little confusing for the boys as well. They were able to open their presents, play with them a little, then we had to pack to them up and be ready to move.

The move, like all moves, was a pain. But it is done now and we all love the house. Grant, Cole, and even Emery love exploring the house (yes, Emery is crawling, quite effectively, now). They all have their own rooms and Rylea and I even have a nice sitting area in our bedroom. In all honesty, the sitting area has turned into our tv watching area, where we cram the whole family on the love seat and watch whatever children's show is on before we put them to bed. It's a really nice bonding time for us.

Another thing happened around Christmas that wasn't so happy. Grant's seizures came back. Now, this wasn't totally unexpected. He is a young, growing boy and we couldn't expect his medicine to not be adjusted. After a few visits to the neurologist and numerous increases in medications, his seizures still hadn't abated. They weren't as bad as before, very subtle, but he was still in a dazed and confused state for long periods during the day.

Grant started speech therapy in October and he has shown enormous progress in his development. The five months he was seizure-free he has followed directions, starting speaking more, understanding more, and communicating overall much better. Even after the seizures came back, he was still progressing and still is.

Recently, Rylea and I were put in touch with the epileptologist in charge of the Epilepsy Center at Children's Healthcare of Atlanta. After reviewing Grant's case, she wanted Grant to get a 24hr video EEG. That EEG took place last week (3/11).

Instead of 24hrs, it turned into 60hrs. For the first 12 hours, he did not have any seizures. The next morning he had one. That afternoon, he had another. Later that afternoon, the Dr. came in and told us what we thought were seizures weren't actually seizures. They were "seizure-like" episodes. Basically, they looked like the beginning of seizures on the EEG, they just didn't turn into full-blown seizures. The second morning, he did have a seizure and they were able to capture it on the video and the EEG.

When the Dr. told us they had captured a seizure, we were so relieved. It meant that we may get some answers we didn't get in Cincinnati (since he didn't have a seizure up there), and it also meant we were able to go home.

We did get some answers, just not the ones I was wanting or for which I had hoped. On the other hand, Rylea had fully anticipated what we were told. We were told that Grant has Lennox-Gastaut Syndrome.

Lennox-Gastaut Syndrome (LGS) is a rare, severe form of childhood-onset epilepsy which is difficult to treat. In general, the prognosis for those diagnosed with LGS is poor. Very few people diagnosed with LGS lead independent lives as an adult as a result of the daily seizures, behavioral problems, and cognitive issues. There is a very high likelihood that Grant has or will have mental retardation requiring some extra treatment and specialized classes and therapy.

Rylea has often told me that she has felt I have been approaching/dealing with this whole situation (Grant's epilepsy) with blinders on. I have often accused her of finding the worst-case scenario and latching on. But I thank her for this. Her approach has kept her prepared for the worst while hoping for the best. My approach, of knowing what could be the worst, but somehow believing the best case scenario, hasn't worked. Yes, it has helped me keep an optimistic attitude and face on during this whole thing. But when the truth comes out, my fall is much harder and faster than Rylea's. 

The one positive that has come out all of this, is that it really has adjusted our priorities and thinking. Before, I was more focused on my career and making sure I make the most money to support the family. Now, the focus is the family.

As of right now, we need as much love and support as we can get. The reality of the news of the Lennox-Gastaut Syndrome has hit us pretty hard. We continue to live one day at a time, we just find some days are harder than others.