Lucky

I have been going back through the last few months of posts. A lot of doom and gloom in there. It seems that I put all of the happy stuff on our family blog such as vacations, weddings, holidays and the like. To quote my brother-in-law, "I'm not gonna lie", things have been kind of dark the last little while. Brian took the stress index test again for fun and it said we should both just keel over from stress alone.

Yet, we have learned a lot about how lucky we are these last few months. Cole is in the middle for kids his age with Dravet. There are some that are better off than him, and some that are much worse. We are so lucky that he can walk. Ataxia and muscle problems are a part of this syndrome and could still be in our future. It took him a while to run. He still does not get a lot of air when he jumps, but hey-after 3 months of practice, he can jump now! He can throw like a Champ, just ask my forehead, which has been the recipient of many a sippy cup lately.

We are lucky that Cole has only been on one seizure med for this long. We foresee others in our future, but over two years with just one drug is amazing. We've added a bunch of others recently, but they are all related to the diet. We are SO lucky that the helmet has disappeared for now. Some never get real control of drop seizures and are constantly a fall risk.

We are lucky that Cole can talk. We realize this skill could be lost, but after months of therapy, we can't make him stop sometimes! He has made remarkable progress on this front in the last year. He has an opinion and can share it. Sometimes, I don't feel so lucky about that :)

Yes, we have oxygen at our house. At least we don"t have to use it everyday. The list goes on. We are grateful for the things that we do have. For the fun, silly boy that Cole is now. Who knows what the future will bring, but at least we smile everyday.

We are fortunate that we can pick up and move across the country right now. To get better medical care for Cole is the main reason. We do not have other children; do not have to pull anyone away from friends or school (besides Brian and myself). It is the right time, with the right insurance that can allow us to get second opinions all over the country. This is reason enough to make the journey-emotionally and physically.

We are lucky that we have only been in-patient 4 or 5 times. I think a lot of that has to do with a persuasive Momma, because they have told us to stay many times. However, things turn out much better if we just go home to our own beds. At least we have had the choice; some don't. Unfortunately for seizures, all you can do is monitor them and give the same meds that we have at home.

There have been good, even funny things that have been happening lately. This is like a journal, and it helps me to go back. I remember this time last year and how scared we were, thinking things could not get worse-wow, was I wrong. Now I can look back and laugh at our naïveté. It has made us stronger though, and willing to take risks. This little boy can overtake your heart in an instant and make you want to do anything for him. I hope I just get to keep him like this, where he tells me funny things and giggles a lot, for a while. His new favorite today is, " The King has an owie." Yes, if you watch Cars religiously like we have been for the last few days, you will realize that when The King gets into a massive wreck in the last race, he does indeed, have an owie.