Well, finally back to the blog. The kid keeps me busy! His blood-sugar continues to drop every day, sometimes multiple times a day. It's not easy feeding him so frequently, but the tantrums have gone down significantly and he is back to communicating and learning new skills.
This weekend I will write a longer post because I want to talk about Kreed's device and Dynavox. Having a communication device has changed Kreed's life in so many ways. He could prove to people the things he's always had in his head. While it wasn't miraculous like the Carly Fleischmann's of the world, it was miraculous to us. I at least always know what Kreed wants.
Lately he has been communicating more since Dynavox came out with their app: Compass. It's everything I would have ever wanted in an App. Ever. Seriously. Amazing. I hated it at first, but have grown to be blown away by it. Kreed too.
Lately Kreed has FINALLY been telling us when he has a headache and requests "medication." He says "can you get my medication." So happy. We figured this out because he kept asking for doctor. Finally I asked if he had a headache. He nodded his head. So I took him to the medicine cabinet and said- do you need medication to stop the hurt in your head? Again he nodded. So I gave him his compounded ibprofen. And he didn't ask for doctor again. Now every few days or sometimes more, he will request either doctor and then hit the medication button on his device or he will just hit the medication part on his device. It's been an amazing discovery and I'm so proud of him.
Things like this show me how much he is growing, even when there are bad times like the last six months. And my heart breaks for the life he sometimes lives. He went so many months raging- and when I say raging- I mean full on rages. He is not present during them. I can't talk to him. I can't talk him out of it. I couldn't say anything that made a difference. He had to go through it and I had to protect him from himself. It was horrible. Now seems light years away because he is so wonderful and loving now. So it breaks my heart that he went through that and we had no idea it was his blood sugar crashing all day long. Makes me so sad. So any voice I can give him, I will work damn hard to give him.
I will continue to post videos to his youtube showing his progress: www.youtube.com/kreedsvideos. Also on his other accounts- instagram (Kreeds World) and twitter (Kreed's World) and facebook: www.facebook.com/kreedsworld .
Well, I wrote most of the above a few hours ago. Now feeding him his last snack before bed and get his blood-sugar high enough before he goes to sleep. I'll end this now. More to come.
This is the story of how we were able to become part of Kreed's World through his communication device and also of our grief now that he has passed away. Kreed found his voice and was finally being heard and we will continue to honor his memory and story. This is and was his journey of hope through nonverbal autism and complex medical conditions that ultimately took his life.
