Disneyland

Wow, what a trip! 5 days at the magic kingdom and I'm still recovering. We had so much fun! Ashton really had a great time. He really was treated so kind by the employees down there. He got to go right on the rides without waiting, he even got to ride them twice if he wanted. Characters went out of their way to talk to him and hug him. Peter Pan and Wendy even stopped during a big street party celebration and came up to him for a chat and photos. He really had such a blast, we all did. I had been looking forward to this trip for so long, its really kind of sad that it is over and done with. The one thing that really got to me though was the stares. Oh my goodness, everyone we passed seemed to stare at him. Some children even came right up to his face. Only a few asked, and really I would rather them ask. I know I shouldn't let this bother me but it is so hard. I know the adults who stare are sad for him. Sometimes I could hear their comments as they walked by. Sometimes I would see them whisper to each other, or children whispering to their parents. I decided I would smile at them, to let them know everything is ok, which worked for a while but then It would start to bother me again. There were times where Ashton insisted on walking by himself. His walking is not that great, which would bring more attention to him. When people looked at him then I felt so proud, like this is my brave boy, my hero, YOU don't know what he has been through, but I DO. I tried to hold my head high because his spirit is so great, it doesn't matter what he looks like or how he walks. The fact that he is TRYING is what makes me so proud. But, then again, I really wished I packed Ashtons shirt that says "are you staring because I'm cute?" Sadly, I forgot it. I know that in the future, I will NOT be one of those people who stare. I will though give a smile and say hello. There were those people and I was so grateful for them. One of them was a girl who was about 18 or so. She was in line ahead of us and she was so sweet to Ashton. She knew he had something wrong but all she wanted to do was talk to him and make him smile. That felt great. I never thought I would be so affected by the stares and I guess I should have expected them, especially being in a place with SO many people. It made me feel like we were some sort of freak show and my sweet son was the star. There were a couple of times where I mentioned to Pat that I felt like yelling, Yes, he had Cancer, but he is all right now...he is a survivor! Maybe I will have a shirt like that made!

Some good news, Ashton's eyelashes are back! His eyebrows are too and he is getting some serious peach fuzz on the top of his head. His hair is growing in darker and it is really fine. The back part is still bald though and we aren't sure he will ever get hair there, but no matter, we will make do somehow. That isn't what is really important anyway, I just don't want him to get teased later on in life.
Its amazing how different he looks though with eyebrows and eyelashes. They make a huge difference.

We pulled his feeding tube again this morning because it got clogged somehow. Nothing would go in and it had been over a month so I figured we could give it another try and get one put back in if he doesn't eat. So far he is drinking, but not eating a thing. He doesn't want to lick things either. He used to like to do that. He says things taste funny. His doctor thinks it may still be too early and I do too. Luckily I have a friend who has very kindly offered her services, she used to be a nurse, and I will be calling her in the morning to get his tube put back in. Bummer! We just need to have patience.

Ashton is still in therapy, physical and occupational, and will be for some time. He is doing great though, making progress each day. Its very gradual but he has come so far from just a month ago. He can now stand up from sitting on the floor all by himself, which is huge! He is trying so hard and thats what counts.