I logged onto the blog and was shocked to see that I have not updated since May, 2010. I think this only goes to show what an amazing year Emily has had in her progress and treatment of her Dystonia. I rarely remember that prior to 2010 she was using a wheelchair 90% of the time and could not write, run, dance, jog, etc.
This past Fall, Steve took Emily up to UCSF for her check up. Drs. Ostrem and Starr felt that she is about 95% successful from her Deep Brain Stimulation surgery. A very slight, (unnoticeable to most) twist in her right foot is really the only remaining symptom. Wow, a true miracle! We will be switching insurance for 2011 to Kaiser and this was a huge decision because it means that Emily's Drs. are no longer on our plan. However, Dr. Ostrem and Starr still want to see Emily once a year at no charge to see how she is doing and because she is still in a research study for DBS. This is a huge relief to us, and maintaining that connection with her Drs. has put us at ease, as they are truly the best in the world at what they do. We are confident that Kaiser will provide Emily with excellent care, but we still have our connection to the Drs. that gave Emily her mobility and the life she enjoys today. For that we are extremely thankful.
Emily started off the year in dance, and had a successful dance recital in the Spring. She is currently in tumbling and continuing to do theraputic riding at Carousel Ranch. This has been very beneficial to her balance, posture and muscle development. Emily will continue this therapy and would like to volunteer her time to Carousel Ranch for the other riders in the future. She enjoys working with the younger kids and with the horses.
Emily also started a new school this year and attends La Mesa Jr. High. She has enjoyed this year so far, participates in a regular P.E. class and can run the mile and keep up with the rest of the students!
Let us not forget a very important person in Emily's life and that is her brother, Adam. Adam has had a great year at Golden Valley and is a Jr. this year. He is supportive of his sister and is protective like every big brother should be. He was always the one who wheeled her around when she needed the wheelchair, and I know he is happy to be able to walk along side with her instead of pushing her in the chair. We went to Knotts Berry Farm a few days ago, and it was such a blessing to walk around with the two of them, side by side, and we left the wheelchair at home! For this, we are thankful!
Lastly, with the help of my mom, Hedy Greenfield, we had our first Distance4Dystonia walk here in Valencia on November 13th. We raised over $12,000 for Dystonia research, and had about 100 walkers. Our sponsors included Pools By Ben, FourStar Lighting, Boston Scientific and Allergan. We had several in-kind sponsors including Castaic Water, Bagel Boys, Robert Schulz Photography and Starbucks. It was so amazing to see our family, old friends, new friends, co-workers and people we had never met before come together and walk, enjoy the day and raise money and awareness for Dystonia. We are so thankful to all of you and feel very blessed.
We do not yet have a date for the Dystonia walk for 2011 but as soon as we do, we will post it. We hope to be able to increase the number of walkers and donations each year!
We want to wish all our friends, family and those who we have never met but continue to follow Emily's progress and our blog, the very best for 2011. Have a healthy and prosperous New Year! All our love, Steve, Marci, Adam & Emily!
Friday, December 31, 2010
Monday, May 3, 2010
Dancing, writing and a science scholarship...Oh my!
Hi everyone,
It has been five months since I last updated. Mainly because things are just going so well for Emily that to be honest I forget that she has a movement disorder! Emily had a visit to Dr. Starr in April and he made a minor adjustment to her settings to try to get her right foot absolutely straight. It is barely noticeable, but the foot still turns in just a bit and her doctors strive for perfection! I can't say that I have noticed much of a difference since the change in contacts were made, but I will continue to keep an eye on it. Dr. Starr does want Emily to have some physical therapy to help her balance and walking be the best that it can. We haven't started this yet, but hope to soon.
Emily's had her first dance recital for her Jazz class and she did an amazing job! It was so great to see her enjoying herself with the rest of the class.
Another great miracle is that Emily is now back to writing with her right hand. She had completely stopped her use of the right hand when it became too painful and her writing was not legible. She had to teach herself to write with her left hand. However, her writing with her right hand is neat and legible again and no longer painful, so she is back to using it full time.
The last update that I have is that Emily received a scholarship to attend a week long Science Camp (Tech Trek) for girls at the University of Santa Barbara this summer. She is very excited and she will get to live on campus in a dorm with three other girls as if she was really in college. I am so thankful to the Santa Clarita branch of AAUW for providing Emily with this scholarship and for the sponsors that made it possible. This has nothing to do with her dystonia but I wanted to share the great news anyway! The mission of AAUW is to advance equity for women and girls through advocacy, education and research. For more information, their website is www.aauw.org.
Thank you to everyone who continue to ask about Emily and her progress. Just remember, miracles can and do happen, but we still need a cure for this dreaded disorder!
Marci
It has been five months since I last updated. Mainly because things are just going so well for Emily that to be honest I forget that she has a movement disorder! Emily had a visit to Dr. Starr in April and he made a minor adjustment to her settings to try to get her right foot absolutely straight. It is barely noticeable, but the foot still turns in just a bit and her doctors strive for perfection! I can't say that I have noticed much of a difference since the change in contacts were made, but I will continue to keep an eye on it. Dr. Starr does want Emily to have some physical therapy to help her balance and walking be the best that it can. We haven't started this yet, but hope to soon.
Emily's had her first dance recital for her Jazz class and she did an amazing job! It was so great to see her enjoying herself with the rest of the class.
Another great miracle is that Emily is now back to writing with her right hand. She had completely stopped her use of the right hand when it became too painful and her writing was not legible. She had to teach herself to write with her left hand. However, her writing with her right hand is neat and legible again and no longer painful, so she is back to using it full time.
The last update that I have is that Emily received a scholarship to attend a week long Science Camp (Tech Trek) for girls at the University of Santa Barbara this summer. She is very excited and she will get to live on campus in a dorm with three other girls as if she was really in college. I am so thankful to the Santa Clarita branch of AAUW for providing Emily with this scholarship and for the sponsors that made it possible. This has nothing to do with her dystonia but I wanted to share the great news anyway! The mission of AAUW is to advance equity for women and girls through advocacy, education and research. For more information, their website is www.aauw.org.
Thank you to everyone who continue to ask about Emily and her progress. Just remember, miracles can and do happen, but we still need a cure for this dreaded disorder!
Marci
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