What an amazing year this has been. I remember at the end of the summer, 2010, thinking... what are we going to do? Our doctor in Utah retired and the doctor they turned us over to had no real direction for us. I recall his words very clearly, "what do you want to do?". It was like he just wanted me to tell him to write a prescription for something so he could be done dealing with it. But, the amazing people that come into your life just at the right moment, through prayer and a burning desire in our hearts to never give up. My good friend, Kelly, who's son has recovered from LKS told me about Dr. Chez. She had a good connection to him, and best of all, I had his direct email. So, I emailed him and about an hour later he responded to the email and told me to bring Dray to CA. He saw Dray only just a few weeks after I contacted him. You would have to have dealt with specialists, especially highly sought out specialists, to truly appreciate how quickly he saw Dray. He is the most amazing doctor, not just because of his expertise which is impressive, but mostly because of his caring demeanor and determination to find answers. Dr. Chez and many prayers are the reason we are here at this moment!
All of that being said... I have to share the emotions that went along with Dray's EEG that he had on October 7th. Todd usually goes with Dray to the hospital, it is much easier for him to do it, but he ALWAYS texts me pictures of his EEG. Well, Todd texted me a picture, and it did not look like the nice calm straighter lines of previous EEG's. Well, my first reaction was concern. So, I kept comparing to the old pictures, and started to panic. After many tears, because of all of the memories of language loss, and how hard treatments are on his little body... it all flooded back to me. I just lost it. I emailed Dr. Chez the picture (knowing that he needed to see the whole night to know for sure). But, I had to do something. He IMMEDIATELY emailed me back and told me that he thought it still looked good, but needed to look at all of it. Even with his positive words I was so overcome with all of the different emotions that involve Dray: not seeing his progress, watching him lose language again, not being one day closer to leading a normal life, all of the weight gain, watching him suffer with being hugely overweight and having such high blood pressure, all of the tears to find a cure, and I could go on an on... I was just incredibly overcome with how much we had gone through and I realized how fragile and precious his life is to me, and how fragile and precious his current success is. I have to be grateful each day for his progress and not take that for granted.
So, for those who might be reading this for their own child, I wanted to let them know what one year seizure free looks like (for our son). He understands ALMOST everything with out sign. New and unfamiliar words I just need to say very clearly and articulate. He can mimic almost any new word we say to him. He will mimic phrases he hears us say. For more complex explanations I have to use sign, or use very simple words and explanations. His language is much more complex, and vocabulary MUCH larger. He is barely starting to sing songs again, simple songs. His major struggles: telling complex stories and complex sentences, memory, and attention. Even with those issues we could not be more grateful, at least we try to be grateful every moment for where we are now.
