California Adventures...

Well, I took Dray to Sacramento, CA to see Dr. Michael Chez. Where to begin? I booked us a hotel, not knowing what to expect because nobody could tell me over the phone. Well, we ended up having an all inclusive experience. A room with one bed and a fold out chair for me, all meals included, movies, a toy room, and only 2 hours per day allowed outside of our room. Sutter Memorial Hospital had it all! So, if you did not catch any of my sarcasm we stayed at the hospital for almost 3 days hooked up to an EEG. Dray did great though. No complaints and just took it all like a champ!

Dr. Chez is just really energetic and really "hands on". He talks everything over. We looked at a bunch of Dray's EEG's comparing and showing me what it should look like. Believe it or not, no doctor has done that for me. So, it was nice to sit and stare at those seemingly senseless scratches moving all over the computer screen and actually make sense of it. He had a bunch of ideas and did not want to waste one single second. He seems so bound and determined to kill this thing. He said the neurologists at Primary Children's did a good job, but he was disappointed in the lack of EEG's documenting Dray more carefully. Also, with seizure activity as stubborn as Dray's he was disappointed that they did not push the steroids longer. In his opinion you can't "pussy foot" around. If you are working with seizures that stubborn you either go full boar with it, or you don't bother introducing those side effects to the child when it does absolutely nothing to stop the seizures. So, we're going a different route with steroids... again. As hard as it is for me to stomach it. His feeling is, and I agree, that this is a terrible disease that if you don't get control of it could be too late. So, we're doing an ACTH shot every day. Which, guess who is the tougher one to give the shot, me or Todd? Me. Hands down. Todd won't even go near the needle (just a side note). The first night at the hospital his EEG showed minor breaks in seizure activity. The next night Dr. Chez wanted to step it up a notch and he doubled his depakote and gave him a large dose of valium (a drug I absolutely detest). But, it was that or put in an IV for more steroids. His seizures did break a lot more, but not as much as we had hoped. So, all that and in the morning Dray goes to get up and his legs are jello. Can't walk and immediately falls onto the floor like he's drunk. So, I carry him to the bathroom where he can't hold himself up to go potty. A drunk 5 year old. Crazy.

So, where do we stand? ACTH shots everyday until our next EEG in 2 weeks, and then reevaluate at that point. We are keeping him at a much higher dose of depakote. Now for some cute and funny stories. Dray has a way with people. He is as other people have told me, "infectious". So, the EEG tech puts on his "hat" and says to me that he is unheard of. He just sits quietly, lets her put it on and he talks sweetly with her. Which, leads to her "infection" with Dray. She comes back to visit several times each day bearing gifts each time. Dray just wraps people around his finger. Dr. Chez was quite smitten as well. He just could not believe how well adjusted, smart, and sweet Dray is. He just repeatedly told me how well he is doing, that he is smart, and so high functioning. He said, "I wish all of my kids were as cute as he is". The best story though happened on the night shift. I noticed our night shift nurse was a VERY pretty girl. I thought, "uh oh, Dray is going to flirt with her". Dray is SUCH a flirt with pretty girls. He took one look at her and turns to me and says, "I like that girl!", with a BIG smile on his face. She is just laughing so hard. After that he says to her, "You are cute," and says,"can you marry me?". She was dying. So hilarious. She was already married, or I'm sure she might have agreed to do it. She was smitten with his suave ways. He cuts right to the chase. No time to mess around.

I know I'm long-winded, but bear with me. So, this is also of interest, maybe just to me, but I have to share. I talked with Dr. Chez awhile about his other patients. He told me he had treated about 50 patients with LKS. He said that people have come to him from all over the world, and usually in the later stages of it. So, I'm an early bird for him. Anyway, he said that of those 50 most are not LKS in the classic "text book" sense of LKS. That's what Dray is. He is smart and hasn't lost his intellect, they can learn sign, and they tend to have a better outcome. He said that usually LKS has other issues compounding it. Autism and different types of epilepsies that compound the issue. Dray is much more rare. He said that most of the kids he has had similar to Dray have turned out fine, but there are some who came to him later in the game that had persistent problems later in life. So, we have a few things going for us. We never know what Dray's future is, but it seems I keep getting encouragement along this horrible journey. Thank goodness for that! Seriously, Dray is such a joy and I just want him to have everything in life! Because, I know that he has so much to give to others. He truly is remarkable. I could really go on and on about my admiration for that boy! So, I will end it on that note. I will update 2 weeks from now. Lots of prayers until then!