Atty had a follow up appointment at Children's today and it went fantastic! We are now going down slowly on Atty's last medicine and if all goes well he will be medicine free by mid June!!! He's not had a single reaction going off any of the other medicines so far and I pray that it will be the same for this last one. I'm so nervous. In a good way. I'm excited but a little scared, just because everything is going so well now, and the unknown is well, just scary. But I feel confident the it's the diet that is the main factor for Atty. That has been proven with out a shadow of a doubt, even for the doubters. There are kids who can go medicine free because of the diet, and I just hope and pray that Atty is one of them. It's a big leap of faith. BIG. We are ahead of schedule for going down on the last medicine. At first his main doctor said he would want him on medicine for two years, but he has amazed every one so much at Children's that this time his doctor felt confident enough to start the weaning process.
His doctor said today that Atty should be the poster child there, his story is so amazing {except that would give them all the glory and I don't think that's really very fair, after all we went through there with them... it was I after all that suggested the diet to them}. To see him before and then now... wow. He was unable to speak and practically unreachable for a moment there. Now he's talking non-stop. Some times it about takes my breath away. I'm working on a video to show at his big party next month. Celebrating being seizure free for one year on his MAS diet. It starts from the beginning and is full of photos, videos, music and stories and every time I watch it or edit it I start to tear up. He has been through so much, and has come so far in this last year. Once I get it done and shown to close friends and family I'm going to try and figure out how to post it here, or link to it some how. It's sort of long though... going on over 1/2 an hour at this point... there's a lot to tell! :)
I mentioned to the dietitian that I had lots more recipes to share and that I really should write a book {I've been mulling this over, but I'm not much of a writer so the idea seem a little out of reach for me...} and she said if I wrote it people would buy it. There are books on the Ketogenic diet but nothing on the MAS diet that I'm aware of. It would be great to help other parents out there starting there kid on the diet, or even just to get the word out there about the diet so that parents can learn about other possible options. I want to share the joy I feel with some other desperate parent. I just want the Modified Atkins for Seizures diet to be common language for people, I want to say it casually to someone and have them say "Oh yeah I heard about that from my neighbor" or even better "Oh yeah I read your book on that" Ha ha!!
Monday, April 18, 2011
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DO IT!!!!!!!! Write the book!!!! Do you know how many people you could help??? I always say that everything happens for a reason. Maybe Atty went through all of this so that you two could help many other people. DO IT!!!!!!
Congratulations to Atty and you and your whole family on the wonderful success!!!!
Continued prayers!
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