Wednesday, January 16, 2013
Completion of the L.A. 1/2 Marathon - Venice, CA - Jan 13, 2013
Emily completed her first half marathon on Sunday, Jan. 13, 2013 in Venice, CA. Her goal was to finish under three hours, and she finished in 2.52 hours! Way to go Emily!!! 15 mile run this weekend, and it is getting closer to the L.A. Marathon. See pics from Sunday's race!
Thursday, January 3, 2013
Journey to the L.A. Marathon!
Friday, December 31, 2010
2010 was a wonderful year!
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!
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!
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
Tuesday, December 1, 2009
DANCING!
Hi everyone,
Today is December 1, 2009. I hope that everyone had a wonderful Thanksgiving! November has been such a blur and has gone by so fast. We definitely have a lot to be thankful for this year. Emily is doing great and enrolled in a jazz class at the beginning of November and she loves it. She hopes to add an additional class (Hip Hop) after the New Year. It so amazing to see the change in her from just one year ago when she was in a wheelchair almost full-time.
Last December, Steve and I took the kids to Las Vegas over the Winter Break mostly to get Emily's mind off the surgery she was scheduled to have on her left foot on December 23rd of last year. This surgery corrected the deformity to her left foot which developed over time from her "dragging" her foot" and walking on the side. The Dystonia first showed up in her left foot and for two years, Emily was not able to walk straight on it. The constant twisting and pain caused her to walk on the side which permanently damaged her foot. Emily had surgery by Dr. Robert Bernstein at Cedar Sinai Medical Center. Dr. Bernstein performed a tendon transfer and a screw was placed in Emily's foot to keep it straight. This surgery was very successful in keeping her left foot straight. We thought all was good until Emily had her cast removed from the left foot, only to find her right foot was starting to twist. Up until this point, she had not had any symptoms in the right foot, only the right hand.
We discussed the possibility of having Dr. Bernstein perform a similar surgery on Emily's right foot. However, because her right foot had only just started to turn, there was no deformity yet (thankfully). This is when we decided to move forward with Deep Brain Stimulation. Emily has Generalized Dystonia, which means it is progressive, and can effect any muscles in her body (ie: tongue, neck, etc). After consulting with Emily's neurologist, Dr. Jill Ostrem, and her Neurosurgeon, Dr. Philip Starr, we decided DBS would be a better option than orthopedically correcting the right foot to stay straight. This decision was based on the fact that her dystonia was progressing rapidly to other areas, and because some studies have shown that the sooner you have the DBS, the better the results in the long run. So, now you have a little bit of idea as to how we came to the decision for DBS. I should also add that before DBS, various medications were tried to be sure that there wasn't an easier way to treat her symptoms.
Steve and I, and I am sure Emily would agree, believe that we made the right decision.
I will let you know how dance is going and hopefully I can get a few pictures (she is stubborn this way, so no promises!).
Love to all, Marci
Today is December 1, 2009. I hope that everyone had a wonderful Thanksgiving! November has been such a blur and has gone by so fast. We definitely have a lot to be thankful for this year. Emily is doing great and enrolled in a jazz class at the beginning of November and she loves it. She hopes to add an additional class (Hip Hop) after the New Year. It so amazing to see the change in her from just one year ago when she was in a wheelchair almost full-time.
Last December, Steve and I took the kids to Las Vegas over the Winter Break mostly to get Emily's mind off the surgery she was scheduled to have on her left foot on December 23rd of last year. This surgery corrected the deformity to her left foot which developed over time from her "dragging" her foot" and walking on the side. The Dystonia first showed up in her left foot and for two years, Emily was not able to walk straight on it. The constant twisting and pain caused her to walk on the side which permanently damaged her foot. Emily had surgery by Dr. Robert Bernstein at Cedar Sinai Medical Center. Dr. Bernstein performed a tendon transfer and a screw was placed in Emily's foot to keep it straight. This surgery was very successful in keeping her left foot straight. We thought all was good until Emily had her cast removed from the left foot, only to find her right foot was starting to twist. Up until this point, she had not had any symptoms in the right foot, only the right hand.
We discussed the possibility of having Dr. Bernstein perform a similar surgery on Emily's right foot. However, because her right foot had only just started to turn, there was no deformity yet (thankfully). This is when we decided to move forward with Deep Brain Stimulation. Emily has Generalized Dystonia, which means it is progressive, and can effect any muscles in her body (ie: tongue, neck, etc). After consulting with Emily's neurologist, Dr. Jill Ostrem, and her Neurosurgeon, Dr. Philip Starr, we decided DBS would be a better option than orthopedically correcting the right foot to stay straight. This decision was based on the fact that her dystonia was progressing rapidly to other areas, and because some studies have shown that the sooner you have the DBS, the better the results in the long run. So, now you have a little bit of idea as to how we came to the decision for DBS. I should also add that before DBS, various medications were tried to be sure that there wasn't an easier way to treat her symptoms.
Steve and I, and I am sure Emily would agree, believe that we made the right decision.
I will let you know how dance is going and hopefully I can get a few pictures (she is stubborn this way, so no promises!).
Love to all, Marci
Thursday, October 29, 2009
Simply Straight!
Today is Thursday, October 29th. Steve has asked me to please update the blog. He has never said that to me before. The reason he is excited for me to update is because we cannot believe the amazing improvement we are seeing in Emily. Her feet are almost completely straight. I am knocking on wood as I write this, because I am superstitious! But, I will say it all anyway! Her feet are straight, she is walking straight, she doesn't have fatigue at the end of the day like before, she hasn't had spasms and her posture is much straighter. We are just so amazed and thrilled. It has been three months and one day since she had the DBS and the progress has been unbelievable. I don't think any of us thought we would see these results so soon.
I am hoping that Emily's courage to go through this procedure will encourage other people suffering from Dystonia to seek treatment. There are options out there and we need to get the word out. so much is still unknown about this disorder and researchers are doing studies and trying to find a cure. Hopefully a cure will be found sooner than later, but in the meantime, there is help available. This is such a new procedure for Dystonia and we encourage anyone with Dystonia to contact us and ask us any questions that you have. You can comment on this blog, or send an email to Kidswithdystonia@gmail.com.
Everyone's continued prayers and positive thoughts are appreciated. This is a progressive disorder and DBS is not a cure. So we must continue to support research to cure this and other movement disorders such as Parkinson Disease.
Emily is doing great. She loves school, especially math and science. She is nterested in pursuing a career in medicine and talks about being a pediatrician. I think she would be great!!!
Lots of love,
Marci
I am hoping that Emily's courage to go through this procedure will encourage other people suffering from Dystonia to seek treatment. There are options out there and we need to get the word out. so much is still unknown about this disorder and researchers are doing studies and trying to find a cure. Hopefully a cure will be found sooner than later, but in the meantime, there is help available. This is such a new procedure for Dystonia and we encourage anyone with Dystonia to contact us and ask us any questions that you have. You can comment on this blog, or send an email to Kidswithdystonia@gmail.com.
Everyone's continued prayers and positive thoughts are appreciated. This is a progressive disorder and DBS is not a cure. So we must continue to support research to cure this and other movement disorders such as Parkinson Disease.
Emily is doing great. She loves school, especially math and science. She is nterested in pursuing a career in medicine and talks about being a pediatrician. I think she would be great!!!
Lots of love,
Marci
Monday, October 12, 2009
Turn it up!
Hi everyone,
Today is Monday, October 12th and I am updating from Minnesota. I am here for a business meeting tomorrow. It is cold here! Emily and Steve flew up to San Francisco today to see Dr. Starr. Emily was not scheduled to go back up until Mid November. However, Dr. Starr was not 100% certain that Emily's sutures in her head were healing properly from the photos that I was sending him every week. The scabs have fallen off for the most part, but there is still a little bit of scabbing where the incisions were made. He wanted to be sure that there was no "hardware" popping out of her head. Steve and I decided that it would be best for Dr. Starr to see Emily in person since he couldnt be sure what was under the scabs. It is better to be safe then sorry! So, they flew up this morning and he was able to take a better look. All is well, and he sees no issues with her healing. Thank goodness! I think we will all rest better knowing there is nothing popping out! I have been putting Hydrogen Peroxide on her incisions on her head per Dr. Starr's instructions. As a result, her hair is growing in a lot lighter, with some red tones. We couldn't figure out why her hair color had changed until we remembered the Peroxide! Yea, we are a little slow!
Since Steve and Emily had gone thru the expense and time of going to S.F., both of her drs. and the programming nurse were able to fit them in today so they don't need to go back next month as planned. They videotaped Emily and her improvement is right where they expect it should be. They turned up the stimulation to 3.5, so we may start to see more improvement soon. Emily is walking well, but her foot still twists in but it is much flatter.
I have to apologize to my daughter because she inherited my tendency to keyloid. The scars on her foot and ankle and now the scars on her chest have all keyloided (is that a word?) So sorry Emi! Her Drs. said we can start using an over the counter product on them in a few months.
Well, that is it for now. As always, thank you for following Emily's progress!
Today is Monday, October 12th and I am updating from Minnesota. I am here for a business meeting tomorrow. It is cold here! Emily and Steve flew up to San Francisco today to see Dr. Starr. Emily was not scheduled to go back up until Mid November. However, Dr. Starr was not 100% certain that Emily's sutures in her head were healing properly from the photos that I was sending him every week. The scabs have fallen off for the most part, but there is still a little bit of scabbing where the incisions were made. He wanted to be sure that there was no "hardware" popping out of her head. Steve and I decided that it would be best for Dr. Starr to see Emily in person since he couldnt be sure what was under the scabs. It is better to be safe then sorry! So, they flew up this morning and he was able to take a better look. All is well, and he sees no issues with her healing. Thank goodness! I think we will all rest better knowing there is nothing popping out! I have been putting Hydrogen Peroxide on her incisions on her head per Dr. Starr's instructions. As a result, her hair is growing in a lot lighter, with some red tones. We couldn't figure out why her hair color had changed until we remembered the Peroxide! Yea, we are a little slow!
Since Steve and Emily had gone thru the expense and time of going to S.F., both of her drs. and the programming nurse were able to fit them in today so they don't need to go back next month as planned. They videotaped Emily and her improvement is right where they expect it should be. They turned up the stimulation to 3.5, so we may start to see more improvement soon. Emily is walking well, but her foot still twists in but it is much flatter.
I have to apologize to my daughter because she inherited my tendency to keyloid. The scars on her foot and ankle and now the scars on her chest have all keyloided (is that a word?) So sorry Emi! Her Drs. said we can start using an over the counter product on them in a few months.
Well, that is it for now. As always, thank you for following Emily's progress!
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