Ok... we are starting week 2 of the GGCF diet. So far so good. Emma has been a little cranky, but I would be too if I had gone without real bread and cheese for a week. I am so glad the girl is not picky when it comes to food! She is munching on a bake potato as I am typing this. (Thank goodness she can have her starches!) She is making that "uummmmm" sound she makes when she is really enjoying her meal! Aunt Lynn brought us a great cookbook and I have planned a couple of meals for the week. (We won't tell Brian what is in them)
We have an EEG scheduled for tomorrow morning. We have to keep Emma up late tonight and wake her early tomorrow. This should be an experience! I don't know how she is going to handle having things stuck all over her head. This is the baby that squirms and giggles when the doctor is measuring her head. I will be sure to bring my camera. Wish us lots of luck with that!
Sunday, January 24, 2010
Monday, January 18, 2010
The Beginning....
We want to thank all of our friends and family for the support that you have given us over the last few weeks. We feel blessed that you will be sharing this journey with us. I decided to start this blog to keep you all updated on the great things happening in our lives. Even though we just received life changing news, our lives really have not changed very much at all. One of the first things Brian said was, "Emma is still the same little girl we loved before the diagnosis." How right he is! I can't believe how lucky we are to have her. I have never seen such a sweet, beautiful, happy child in my entire life. I am not just saying that because I am her mother. She seems to touch everyone that meets her. Walking through the mall with her, you feel like a celebriety (even more now with the glasses). She gets so many smiles and comments about how cute she is. We have a great life and although we now have Angelman Syndrome in our lives, it will still be great. Emma is going to do great things. I believe that she might do more now then she would have without AS. We have met people all over the world and know that we have friends in so many places now!
I am working on a website for Emma that will also give you the information that I am learning about Angelman Syndrome. I am so excited about all of the therapy opportunities and the research that is being done. We are so proud of Emma and feel that she is going great at 16 months. We will make sure that she gets every therapy opportunity that is out there. We want to start hippo therapy with Emma, which can begin at the age of two. We are already one step ahead, as Emma had her first experience on our horse this past weekend. She had a smile on her face from the time she got on and even cried when we took her off! Watch out cousin Jaynee, Emma might take that state title from you one day!
I have also met several families who have had wonderful outcomes by changing their childrens diet. Sorry Emma, no more Kraft Mac-N-Cheese! We are transistioning her to a glueton and casen free diet. So far she has loved everything that we have given her. Things won't really change in her diet too much, no more processed foods and more fresh fruits and veggies. Really, we all should be eating like this.
We have a meeting with her therapist coordinator today to find out more about more therapy opportunities for her. She will start speech therapy right away. She actually was released from speach at 12 months because she was babbling so much. We know Emma has lots to say and will be able to tell us everything one day!
Check back often for updates and pictures. I will let you know when we have her website up and running. Thanks again for your thoughts and prayers!
I am working on a website for Emma that will also give you the information that I am learning about Angelman Syndrome. I am so excited about all of the therapy opportunities and the research that is being done. We are so proud of Emma and feel that she is going great at 16 months. We will make sure that she gets every therapy opportunity that is out there. We want to start hippo therapy with Emma, which can begin at the age of two. We are already one step ahead, as Emma had her first experience on our horse this past weekend. She had a smile on her face from the time she got on and even cried when we took her off! Watch out cousin Jaynee, Emma might take that state title from you one day!
I have also met several families who have had wonderful outcomes by changing their childrens diet. Sorry Emma, no more Kraft Mac-N-Cheese! We are transistioning her to a glueton and casen free diet. So far she has loved everything that we have given her. Things won't really change in her diet too much, no more processed foods and more fresh fruits and veggies. Really, we all should be eating like this.
We have a meeting with her therapist coordinator today to find out more about more therapy opportunities for her. She will start speech therapy right away. She actually was released from speach at 12 months because she was babbling so much. We know Emma has lots to say and will be able to tell us everything one day!
Check back often for updates and pictures. I will let you know when we have her website up and running. Thanks again for your thoughts and prayers!
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