Dray is hanging in there as usual. Our poor little guy, is unfortunately, not little at all. He has put on so much weight. He seems pretty miserable lately. I'm trying really hard to put myself in his shoes: so much medication messing him up, hungry beyond your imagination, and carrying around tons of extra weight. These things cannot feel good to him and he seems down. He is not nearly as smiley and playful as he was. So, I ask him to smile, which makes me more sad because he can't smile because his cheeks are so full and big. I'm questioning all of his meds right now, but his EEG's look so good. I don't dare to take him off any of his meds when his EEG is cleared and when he does talk he talks so much better, and understands so much more. My heart just aches to have my happy, laughing, playful little guy back. So, with this mood of "missing him" in my heart I realize so many things that I miss about the old Dray pre-LKS. I miss just sitting down and reading books and having him repeat words and phrases back to me, I miss teaching him songs, I miss hearing him sing, I miss watching him really enjoy playing with other kids, I miss him being outgoing and asking other kids and adults questions and engaging with them, I miss telling him other people's names and having him be able to call new people by their names, I miss hearing him quote movie lines.... I could go on and on. They seem like such small little things that you would NEVER think about your child doing and loving it, but to me, for me to have that back would be so huge. No more being sad. Moving forward. He is doing better and I have to just stay with that. Like I said he had another EEG that was cleared, yay! So, we continue to taper. We have an endocrinologist appointment January 12th. He has been on steroids over a year now, so we need to look at what that is doing to his body, and the endocrinologist helps with that. We go to Sacramento again on January 19th to check in with Dr. Chez. We will do another EEG before we go to make sure there are no changes in his EEG as we continue the taper. We are at 40 units a day right now for the ACTH. Dr. Chez says that he will continue to gain weight until we get down to 20 units. So, pray for Dray. This is hard, I pray that we are doing the right thing, and that this will all be worthwhile in the end. He is my little trooper. He sits right down for his shot everyday and chooses where he wants to put it. He rarely cries about it. He takes all of his medications and supplements (about 5) everyday with no fussing. He asks me if he can go to speech and to get a white hat at the hospital. I could not be more grateful for such a sweet little boy!
