I'm glad Todd wrote the previous post for Dray because he has been silent in this blog... and he is not a bystander in all of this. Todd is very involved. I am the one that is persistent, and always pushing for more answers and more progress, Todd is the calm one that doesn't stress as much, but just shows love and concern for Dray. They have such a neat bond. Todd has to be gone for 6 weeks for instructor pilot training this summer. He was on skype with Todd and said, "Dad, I want to take you out of the computer and snuggle you!" He loves his dad!! This past week Dray has really been communicating so much more effectively. The new words he has added to his vocabulary are coming at an impressive rate. I can hardly believe the words he is picking up and repeating back to me. I have not seen him pick up new words like this since he was probably 3 years old. I know we are not totally in the clear, but if this continues I see such a great future for him.
Dray had his birthday on Friday, July 22nd. Every birthday is a time of reflection for me. On his 4th birthday, just 3 days before, he was diagnosed with LKS. I remember not being able to explain the concept of a birthday to him... he had no idea what was happening, or how old he was, he couldn't understand anything going on around him that day. I couldn't ask him what he wanted for his birthday... he didn't have the words to respond to that question. He could barely speak. But, this year has been awesome. He understands everything, and came to me with a list he had made of the presents he wanted. He could repeat back to me what we were doing for his birthday, who was coming, and he knows how old he is. This is so different than 2 years ago. What a miracle!! Only problem is that he now thinks he is old enough to do everything.... he says, "I'm 6 now, I can stay home by myself, or I can light fireworks...." Oh dear! What a sweet little boy... can you tell we love him so much? He is constantly amazing us, and we can't wait for more!
For those who might be interested... we have kept Dray on Depakote (20 ml daily, split into 2 doses), zarontin (6 ml daily), Namenda (2 ml daily), L-carnosine ( 1,000 mg daily). I know when I talk to other parents with LKS kids I always wonder what their meds are, so that's for those of you who may be reading this for info regarding your own child!
