Hi everyone and Happy New Year to all of our Jewish followers and friends,

Today is Sunday, September 27th. It has been about 3 weeks since I updated, so I thought I would share a few things. Since our last post, Emily has started Jr. High and is attending SCVi. This small charter school is a perfect fit for Emily and she is enjoying it very much. Yeah! They went on a field trip the second week of school to go kayaking. Unfortunately, Emily hasn't had the okay to go in the water yet, and Dr. Starr did not think it was a good idea. The school was very accommodating and she was able to go and participate in other ways, videotaping, etc. This was important to her because she does not like to be singled out or left out. She really wants to kayak though (and so do I), so when she gets the okay, we will get a group together and go back to Castaic Lake.

Emily has been taking pilates and has been enjoying it but is ready to move onto dance of some kind which is a testament to how well she is feeling and getting around. The wheelchair has been in the trunk of my car for well over a month and we have not needed to take it out. This is just amazing and I cannot tell you how exciting that is for her. Emily's new friends at SCVi do not even know she ever needed one. It was just three months ago when we went to Magic Mountain and I pushed her around in the wheelchair while her friends all went running amock. It was only in July that we went on our cruise and the passengers were used to seeing her whip around the deck in her wheelchair. So, things are definitely progressing for Emily!

Her scabs on her head have still not completely healed and Dr. Starr has had me send digital photos once a week to see how they are doing. This is the reason she has not been cleared to completely immerge herself in water. He isn't sure why it is taking so long, but has me cleaning them every night with Peroxide. Hopefully they will fall off soon.

We did have a very big breakthrough yesterday. For the first time in over a year, Emily took a shower standing up, and without needing a chair for balance. She said it was great! We are very excited about that.

The Signal newspaper came out and did an update on Emily since their first article on her last Spring. The reporter was surprised to see how well she is doing. We have received a lot of response from the articles in The Signal from all over the world from people who have seen the article on the internet. There are people out there with dystonia who are looking for answers and a way to cope with this disorder that can leave people in a wheelchair and often bedridden and in a lot of pain. Emily is truly an inspiration to these folks. Emily has made friends with another girl in New Hampshire who is 13 and who also suffers from Dystonia. After hearing Emily's success, she has decided to pursue DBS. We will keep you updated on how that goes. They have never met, but hopefully one day we can get them together.

Emily's next dr. appt is November 18th and it is possible the Dr. will turn up the stimulation some more. She will be videotaped to see how her movement is progressing from before the DBS.

Thank you again to everyone for always asking about Emily. It really makes a difference to know that people are interested in her progress and is the reason for this blog.

Love, Marci