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
Thursday, October 29, 2009
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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