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

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

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!

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

It has been over a month since Emily's surgery and she is doing very well. Steve and Emily flew up and back to San Francisco today to see Drs. Starr and Ostrem. They seemed to notice an improvement in her symptoms as have we, although very subtle. They checked her stiches and Dr. Starr wants us to take a photo of her head stiches in a week or so and send them to him by email. He thinks they are fine, but wants to keep an eye on their healing just in case. This way, we wont have to fly back up in two weeks. Much easier. The incisions in her chest where the batteries are look great too. They turned up the stimulation from 1.5 to 2.5. They initally turned it up only to 2.0 Steve said, but she seemed to tolerate it, so they turned it up more. I hoping we really see some improvement now. Emily feels like her foot is flatter and I notice it too. It still turns in some, but she just looks a lot more balanced. Hard to tell if she has had any improvement on her right arm and hand as she hasn't been writing at all. Dystonia symptoms vary from day to day depending on a lot of factors such as fatigue, stress etc. Hopefully what we are seeing is an improvement though.

School has not started for her and she is quite bored. She is getting excited to start her new school and Tuesday couldn't get here fast enough. She has met two of her three teachers and also a few of the students.

I will let you know when something else occurs!

Thank you to everyone for your calls, emails, etc.!

Love, Marci

Just waiting .....

Hi all,
It has been awhile since I have updated. Nothing much is going on at the moment. Emily is healing very nicely and her next appointment to see the Dr. in San Francisco is on September 2nd. They will be increasing the stimulation of the device at this appt. so hopefully we will see some results then. Due to swelling, the device is turned on, and then increased gradually. (At least this is how I understand it!). There have been no changes yet, but we did not really expect there to be. Emily has actually had quite a few painful evenings with spasms and last night she started having spasms in her left hand. This was upsetting to her because up until now, her left hand and arm have been symptom free. She trained herself to write with her left hand when it became too difficult to use her right hand. I am hoping that this is just an indication of the symptoms getting worse before they get better. I did some reading on the Medtronic Soletra Device which is what Emily has and it does indicate that this is a possiblity. I have attached the link for those interested in reading about the device that she has. It is amazing stuff!
http://www.medtronic.com/your-health/dystonia/device/our-activa-dbs-products/soletra/index.htm

Another few weeks before Emily starts school, so she has been spending time with her grandparents and cousins while Steve and I go off to work, and Adam goes off to school. SCVi starts Sept. 8th. She is looking forward to this school that encourages thinking and problem solving and has no homework and no tests! Where was this school when I was a kid? Oh yeah, I am product of L.A. Unified. Hold your comments please!
Love, Marci

New Haircut!

Hi all!
Well, the day came when Emily could finally wash her hair and take a "real" shower. She waited until tonight when I got home from work so that I could help her with the knots. So, first we took out the Prell Shampoo. Yes, you heard me, PRELL! Do you old people remember Prell? This is what the Dr. told us to use to help dissolve the stiches in Emily's head. I can't believe they still make it, but Steve found it at our neighborhood Walgrens. So, I lather up the hair, careful not to massage the head too much and we rinse out that Prell. Then, comes the globs and globs of conditioner (any kind will do). I worked on her hair for at least 45 minutes trying to get out the dreadlocks that had formed. I stayed postive for Emily but inside I knew it was a lost cause. The dreads were right smack in the middle of her long hair just below her shoulders. I remembered that sometimes peanut butter works to get out gum that gets stuck in the hair (I did this several times as a child). I yelled down to Steve to bring up the peanut butter. Yes, creamy, not chunky. And yes, Skippy is fine. After reassuring Steve that I wouldn't let peanut butter go down the bath drain, I worked it in as best as I could. No luck.
I decided a call to my friend/hairdresser Julie was in order. As Julie sat at her son's football practice, she gave me instructions on what to do. I put more and more conditioner in Emily's hair and then got her out of the shower. We let it sit and then we tried to get thru the hair with a big fat comb. No luck, and a few tears later (mine and Emily's) I called Julie back. No problem, she would be over shortly. So, Julie came over and gave Emily a cute, new, funky do, that looks really great! Emily posted a photo for all to see. You can barely see where the dr. shaved her head on top too. All's well that ends well!!! Thanks Julie!
Love, Marci

Finally home!

Hello from Santa Clarita!
We made it home safe and sound after an 9 hour drive. Yesterday, August 7th, we had a 10:00am appt. with Dr. Ash. She is a fellow working with Dr. Ostrem and Dr. Starr at UCSF. Dr. Ash spent about two hours programming Emily. She used a hand held device, the size of a small label maker, to test the leads that were placed in Emily's brain. Each lead has four contacts and each one needed to be tested to see how Emily responded to each one. Based on this, she figures out how much stimulation each contact should receive. It was simply amazing to watch the control she had over Emily's body using the stimulator! There were a few times that Emily's speech was effected as she turned up the stimulator. This was all a normal part of the programming though. It was very exciting to see Dr. Ash turn on the stimulator, however, we will most likely not see any difference in Emily's symptoms for awhile. It could take a month to six months and some patients have even gone a year before seeing improvement. Each patient is different, so now we just wait and pray! We will return to S.F. in a month to have the programming checked and to make any necessary changes.

Emily's sutures were dissolvable so they did not have to be removed. The worst part of the whole appt. was when Dr. Ash had to remove the surgical tape that was used over the incisions on Emily's chest where the batteries were placed. It was extremely painful for Emily and I know Dr. Ash didn't enjoy it either! However, Emily was brave! We are not sure how in the world they can invent a neurostimulator that is implanted in the brain, but they cannot invent surgical tape that doesnt cause excrutiating pain when removed! Somebody please work on this!

Emily was hoping to come home and take a nice long shower and shampoo her hair. Unfortunately, she still needs to wait until Monday to let the incisions heal a bit more. She is counting the days!

We spent today re-stocking the house with food, and hanging out with Adam. Adam hadn't seen Emily or Steve in two weeks so it was nice for us to have some quiet family time together. Adam is getting ready to start school on Thursday. Steve officially goes back the week after, and Emily doesn't start school until Sept. 8th. She will attending a relatively new charter school in Santa Clarita called Santa Clarita Valley International. Summer has gone by too fast!

I will continue to blog as things develop. Thanks for following Emily's journey! It will be exciting to share her progress with all of you!

Love, Marci

EMILY IS PROGRAMMED!!

Emily finally went to the Dr. this morning to get programmed. I don't know a lot, only what I could get out of Steve in between the Dr. coming in and out of the room. (I am in Canyon Country, they are in SF still), but from what they said, everything went very well! They start out at a low setting and gradually increase it every few weeks until it is at the perfect setting to help her dance :). (Am I close Marci. lol).

Emily took a picture of her being programmed with the Dr. She is the best of the best, and Emily looks great. She sent it to me to upload so everyone could see how great she looks! I am too excited...

After this appointment they have two more weeks up north...just kidding! They are comming home today! FINALLY...They are taking the scenic route down the 101 this time, and should be home by dark. Thanks for everyones well wishes...what a journey it has been!

When they get home they will update the blog again with more details about today.
Love, Marni

Past Couple Days.

Me and my Dad have been trying to keep busy these past couple days. We saw two movies, Aliens in the Attic, and The Proposal. they were both really good. Today we went to the Intel museum and the Pez museum. The Intel museum was really interesting and fun. At the Pez museum, they have the world's largest Pez dispenser. We also bought a couple. So this way our days are broken up and go by much faster. I took some pictures on my phone today, but it died, and I don't have my charger. So I will post them later.

Love,
Emily

Cousins!

My cousins, uncle, and aunt came up today. We just got back from dinner. We went to dinner and ate soo much food. They went to the Giants game today with their friend Josh Latzer. WE are hanging out with them again tomorrow and we are going to fisherman's wharf. YAY! My mom went home today, as she has to work tomorrow. I miss her. Anyways, not much else to say. I'll write back later.

Love,
Emily

Day three at the Homewood Hotel

Greetings from Brisbane. We spent day two out of the hospital just hanging out at the Homewood Hotel. Our day consists of sleeping, eating, napping, reading, eating, facebook, eating, more napping and TV. Today we woke up at 8:30 and went downstairs to eat breakfast. It was packed and very picked ovcr. I think it was so crowded because it is the weekend. Steve is convinced people just pull into the hotel for breakfast that aren't staying here. I was appalled at the amount of food on some people's plates (no, not ours!). It was as if they had never seen food before. It wasn't even that bad on our cruise! Anyway, we finished eating and Emily and I went upstairs to the room, and Steve went to a local laundry mat. Truly exciting. They have a laundry room in the hotel, but it is always in use, and there are only two washing machines, and only one dryer is working. So, he just decided to take it to a local laundry mat and get it all done at once.
Our next outing was to the local mall to get lunch and to buy Emily some long, comfy pants. We forgot how cold San Francisco can be, and she didn't have anything very warm. In fact, she only packed her flip flops. Her cousins are coming up here for a vacation and Emily will see them tomorrow (Sunday). They were kind enough to go buy our house before they left to grab Emily's new custom made, multi-color Converse. So she will have those tomorrow. She isn't really walking and uses the wheelchair so she can just wear socks, but she will be stylin now in her shoes.
We also picked up some hair clips and bobby pins so Emily could put the rest of her hair up. It was half hanging down, and was all over the place and was really bothering her. We have since clipped all the peices up so it is out of her face and off her neck. She feels much better!
We came back to the hotel room and we all took a three hour nap. It was so great!
We are going to get ready and go to the local Chilis for some dinner. We gave Emily the choice to bring in food or go out, but she feels like getting out for a bit, which is great! She was a little worried at first about going anywhere since she cannot wash or brush her hair. I told her that no one in San Francisco knows her and that we will never see these people again, so who really cares. She decided I was right. (Aren't moms always right?).
So, that is our day. I fly home in the morning and Emily and Steve will spend some time with Uncle Mike (Steve's brother), Auntie Marie, and her cousins Jake and Izzy. She is really looking forward to seeing them. Next week, if Emily feels okay, Steve will take her to the Pez Museum and there are some other exhibits that she would like to see. I told her Friday will be here before she knows it! It will be exciting to finally have the stimulator turned on!
We will keep updating as things develop. Not too exciting at the moment. :)
Love, Marci

Well...

I have been relaxing at the hotel. It's kinda boring though because they don't get Nick or Disney channels. So, I have also been reading. My dad and I are going to go to some fun exhibits soon and I'm excited. My cousin's come up tomorrow. YAY! So, other than that not much more to post. I will post back soon though.

Emily.

Finally at the hotel!

Hi all,
Emily was finally discharged! Yipee! Steve took Marni to the airport so that she can get home to her own family who must miss her a lot. We appreciate all she has done for us during this time. She helped get things organized, comforted us, and was there to lend a hand for whatever we needed. Emily and I are at the hotel and just had dinner. The hotel provides dinner and tonight it was cheese ravioli, salad and bread sticks. Mine came with a glass of red wine, all for no charge! I am savoring the wine. Emily is both watching TV and reading her Judy Blume book. She looks very relaxed and happy to be out of the hospital! The hotel room is very nice and it is like a mini apartment. It should be quite comfortable for Emily and Steve all next week while they hang out. I am flying home Sunday morning to be with Adam and to relieve my parents who have been wonderful during this whole process. Staying with Adam and making sure he eats and gets to and from band camp everyday. It was just one less thing for Steve and I to worry about. My parents are going on a well deserved Alaskan cruise and leaving Sunday. I will get home Sunday just in time for them to leave and for me to return to work on Monday morning. My bosses and coworkers have been extremely wonderful and I want to let them know how much I appreciate all their support.
Steve's parents left this morning and helped to keep our mind off things while Emily was in surgery. For that I am thankful. It was a long day! Everyone's calls, texts, emails, facebook posts and prayers were much appreciated! It is so nice to know that so many people care about our family, and even friends of our friends who have never met either us or Emily. Just amazing!
I will fly back up to S.F. on Thursday night so that I can be at Emily's Dr. appt next Friday. We will meet with the nurse who will turn on and program the device. After the appt., the three of us will drive home. So, nothing much going on at this time. Emily just needs to relax and rest and heal. I will continue to update, here and there, if things come up that are worth sharing. Thanks again to all who are following Emily's journey. Once the stimulator is turned on, we will have a lot more to report, and it may take some time to see some improvement, but I will certainly keep everyone updated. As for me, I am off to take a nice, long, hot shower!!! (Not sure when Emily will post something, but hopefully soon!).
Love Marci

Dr. Starr visits

Hi again,
Dr. Starr came to see Emily about an hour ago. He removed her head wrap and checked the sutures on her head. He had only put the head wrap on because he didn't cut too much hair and the bandages weren't sticking to her head. However, when he removed the wrap, the bandages appeared to be sticking well, so he did not need to wrap her head up again. I asked if it would be easier for her to keep it clean if he re-wrapped it, but he prefers not to. The wrap makes her head hot and sweaty and thus is more likely to breed infection. So, she has her hair up in a ponytail, and she cannot wash it, or touch it, until we see the nurse next Friday.
The time period in which a stroke is a risk factor has passed, so that is good news. The most important thing is to keep the sutures dry and clean. No showering, but she will be able to have a very shallow bath when we get to the hotel.
We are waiting for the discharge orders. We will most likely be here for a few more hours, which is okay, because Emily is asleep and the hotel room isn't ready yet (we are switching hotels to a one bedroom suite, with separate bedroom and sitting area and kitchen, with stove, dishwasher and fridge). The hotel offers both breakfast and dinner, so this will help with convenience and money. Thanks again for following Emily's progress. As soon as she feels up to it, she can start blogging herself. For now, I will continue to keep you updated.
Love, Marci

Almost Out..

Emily seemed to have a better night last night. Moved into her own room, she slept more, as did Marci, and she seemed more awake this morning, according to Marci. She ran a slight fever, which the Dr. said was normal after surgery and this morning it is gone. So now we wait...

Hopefully she will be discharged today. Steve went this morning to the Homewood Suites and made his reservation a sure thing, upgrading so Emily could have her own room and a bath instead of just a shower. We had been staying at the Radisson, but the Homewood Suites offers rooms with full kitchens which will be great for making meals with Emily in mind. It will be great to lay in bed and recover and relax over the weekend and beginning of the week while eating homemade mac and cheese or cup of noodles. It just makes sense.

So this morning, we packed up and checked out, and will run to the store to make sure Emily has some foods for tonight. Then we are off to the hospital to wait for the Dr. to say she is good as new :).

As for me, I am flying home tonight. I have not been home to play with my own kids and see my own hubby in what seems like forever. I am toying with the idea, if Emily is up to it, of driving back up later next week with the kids and staying overnight. We can take Emily out to dinner. My kids have been asking about her every day - especially Dillon. But we will see how it goes.

Meanwhile, I want to thank everyone for their kind words and encouraging voices online. I especially want to thank the parents (Steve and Marci's and my own) for everything they have done. Whether here or not, they have each played a critical part of making sure Emily is better in no time at all. I cannot think of friends I have ever had in my lifetime that are quite like Steve and Marci. They are truly amazing, and their children are amazing. I am blessed.

Love to all,

Marni

Good morning from Marci & Emily!

Good morning! Yes, Marci is feeling very refreshed. Finally a good night's sleep. Emily and I both slept through the night and until 9:00am - in a hospital. Unheard of. I know I feel much better and can offer better care to Emily now that I am rested. Emily had a fever last night, then went up a little. The nurse waited to give her Tylenol so we could see if it went up more. That would give an idea if she had an infection. But, thank goodness, the fever didn't go up, and seemed to be a normal part of post surgery. Emily took some Tylenol and the fever came down. Emily had a few strawberries for breakfast and a few more bites of the McFlurry that her father bought her last night. Oreo. Is there another kind? She is lucky I didn't eat it myself it looked so good. She still has eggs and a croissant sitting here plus cocoa puffs, but she doesn't seem interested. We are much too busy passing the time with the Price is Right. She loves this show! Some things are so timeless, even with Drew Carey and no Bob Barker!
We went for a short little walk earlier in the wheelchair and Emily wanted me to take her to the Technology room where teens can go and hang out. Unfortunately, it was closed until later. We manuvered our way back to the room (thank goodness Emily was with me as I was completely lost). She certainly got her good sense of direction from Steve, so that is good). I say "manuvered" because interns and med students fill the hallways here so it is hard to get thru. It is a nice environment seeing all the young students though, so it is okay.
So, just waiting for Dr. Starr and will update soon.

My Own Room!!

Emily has finally been moved to a regular room on the pediatric floor! Yahh Emily!! She was out of bed in the wheelchair and Steve wheeled her outside for some non-hospital air, and down the hall to see rooms with no tubes and bed pans :). She is now resting comfortably in her new room watching TV.

She is recovering well and should be released tomorrow sometime. From there she will be staying at the Homewood Suites in nearby Brisbane, California (10 minutes from the hospital) until next week when she has her first check up. At that check up the Dr. will program the devices she has put in and hopefully it will begin to make the dystonia a thing of the past.

While it is not a cure (there is no known cure), this surgery should help Emily lead a normal life...and we all know that includes the big party Karen promised her...food, cake, Mr. Pibb (her fav) chicken nuggets (Is there any other kind of chicken?) and of course - dancing :)

Love Marni

Update

I wanted to update everyone and let you all know that Emily is doing very well. She has been up to go to the bathroom, and is requesting McDonalds for dinner :).

On a side note, there was a second DBS surgery (what Emily had) right after Emily's yesterday. It was for a 27 year old man named Ryan Stockdale. He and his family live in Idaho, and were once the recipients of Extreme Home Makeover. He had the same surgery with the same doctor and we have heard it went OK as well. I wanted to include his web site as we have made friends with this family and are each following each other. Please visit the web site...his story is incredible.

www.ryanstockdale.org

Back to Emily...she is doing very well, and I am excited that later today once she is in a regular room she will be able to update this blog herself. Thanks again to all who are following this, for everyone's words of encouragement, and prayers...

Love Marni

Wednesday

We are back at the hospital and Emily is doing very well. She is in ICU but they are moving her to a regular room as soon as they have one available. She had an MRI this morning, but it is routine, so not to worry. She ate Popsicles and drank juice last night and watched her favorite TV shows. 

The bandage on Emily's head was a question I got from some last night and I wanted to let everyone know it was to keep the hair (we all know she has a lot of thick hair) out of the way during surgery. The Dr. wanted to cut only as much hair as absolutely needed, so he wrapped the rest. It looks far worse than it is. 

As soon as she can, Emily will be back blogging. 

Love Marni

My Surgery

Today was my surgery. I have been out of surgrey for about 3 hours, and I am updating my blog. My DBS went well and I am recovering quick. It was a very busy day and I am really tired:)Thanks for everyones wishes for me to get well.

Love Emily

Surgery is done!

Dr. Starr came out and said the surgery went very well. We have moved from the surgery waiting room up to floor 6 - pediatrics. Emily is in PICU; Pediatric ICU tonight, and then in a regular room tomorrow. Hopefully, she is out of the hospital Thursday...

Marci will update soon...but it looks good so far!! :)

UPDATE

Hi all,
The Fellow working with Dr. Starr just came out to tell us that Dr. Starr is finishing stitching her up and then everything went as expected! We probably won't see any immediate results, so we need to be patient. We are waiting for Dr. Starr to come down and talk to us now. Side note, they were able to give her a very limited haircut and save most of her hair. Emily will be happy about that! I will update again after speaking with Dr. Starr.

Marci

Making Friends

We are sitting in the surgical waiting room. We just starting talking to a woman sitting next to us. She is here for her son in law who will be having the same DBS procedure as Emily. However, he is having it to cure what is called suicide headaches. They are so severe that he cannot function at all. This family flew in from Idaho to see Dr. Starr. They have been seeing him for a year, and this procedure is his last hope. They did research across the world and found out Dr. Starr is the best of the best. This procedure is scheduled to go right after Emily. This physician is just amazing. Are you kidding? Another 6-8 hour procedure right after this? Unbelievable. I am now praying for this gentleman and sending positive thoughts that his headaches will be cured. Unfortunately, this man's insurance would not pay for the procedure. It is costing them$140,000 just for the surgery, and the device. I am so thankful for my job and my great insurance that is covering the entire thing! What a blessing.

Marci

Update

It is 11:45 and the nurse just came in and told us that they are still in the first part of the surgery but that everything is going fine. The first part of the surgery includes drilling the holes in the skull and placing the leads in...which are what connects to the wires. We are not sure how far along they are, but if everything is good then we don't care :)

Talk soon

Marni

Nerves

This is Marci. One of the volunteers just came in and said that everything is going fine and surgery started at 9:50. So, we sit and wait. I have already been up to the cafeteria twice. Unfortunately, I am one of those people that eats when I am nervous. Why couldn't I be that person who CAN'T eat when nervous! Eggs, bagel, coffee, watermelon, pudding, Snapple. Yes, It is 10:27 and I have eaten all that already. Oh, I forgot about the Spree candy I am eating while sitting here too. My favorite. Yes, I know I am diabetic, but I needed the Spree today! Thank goodness for wireless internet. Makes the time go much faster. A few people have asked where they can send Emily a card. We are at UCSF Children's Hospital, 505 Parnasus Avenue, San Francisco, CA 94143. I obviously do not have a room number yet, but will post when I do.

 Marci

Surgery

When Emily was taken into the OR prep room at 6, she met with the DR. and he talked to Steve and Marci for a bit. Then she was put to sleep and taken for an MRI about 7:30 am. We got word that the MRI was finished about 10 am and surgery was then going to start. We are not sure what the MRI was for, but we are thinking it has something to do with tracking where to place the wires for the device and where the dystonia might have spread. 

We will update again soon...

Tuesday Morning

We are here and almost settled. We arrived at the hospital about 545 and checked in nd they just took Emily down. Marci and steve went with her. We are not sure if she will come back in here (we are in the pediatric waiting room) before surgery or not, but I am not thinking so. 

It was a long night. I tossed and turned and heard others in the room doing the same. But spirits were good this morning. joking about Steve's driving (oye very!) and the fog (wayyy too thick for one city). 

So Emily is one of 65 surgeries today and will go in and hopefully be done about 2, maybe 3. I will post as much as possible, but for sure when we here something. I am sure Marci will post as well. 

Thank you from all of us for all of the kind words, words of encouragement and notes and emails. They are uplifting...and Emily reads every last one! Now, all we need to do is pray for a successful surgery and a fast recovery.

Love Marni 

A mother's note...

I am finally getting a chance to get on here.  This is Marci. I have been busy today.  Steve and I took Emily to her appt. at UCSF this morning at 9:00.  We didn't leave there until about 1:00.  We met with Dr. Ostrem, Emily's neurologist, and she evaluated Emily and videotaped her movements as she does at every visit.  It is important to know the places that Emily is currently having symptoms so they can target these areas in the surgery.  Dr. Starr joined us during the appt. with a "fellow" who is learning along side Dr.Starr.   Dr. Starr spoke to us about what to expect tomorrow.  I will tell you briefly what will happen so you have a little idea of what will take place.

A metal frame will be placed on Emily's head, and Emily will have an MRI.  After the MRI, Emily will be taken to the O.R.  The doctor makes two small holes in the head. One for each system.  Two systems, will be implanted because Emily has dystonia symptoms on both sides of her body.  Emily will be under general anesthesia and will not feel anything.  When the appropriate spot in the brain is located, a wire (lead) is passed into the brain and held in place.  The metal frame can then be removed. The wires will connect to an neurostimulator which will be programmed about a week after the surgery.  Emily will have a remote for the device and will be able to turn it off if she wants to (like when she is sleeping).   We have consented for Emily to be a part of a research study which allows the doctors to track the effectiveness of the device.  We dont have to do anything different for this.   I am so grateful for wonderful and brillant physicians.  These are the best in the world and I couldnt have more faith in them.  I will keep you posted all day tomorrow.  We need to be at UCSF by 6:00 am so I should probably get some sleep, if that is at all possible!   Thank you to all of our family and friends for their ongoing support and for friends of friends and our family who have shown so much concern for Emily and our family.   We cannot thank you enough for your positive thoughts and prayers.   And to my wonderful daughter, you are strong, you are amazing and I can't wait to see you dance again. 

Posted by Marci 

Tomorrow

Tomorrow is the big day. Marci and I will be updating both this blog and Facebook throughout. We are up and leaving by 5:20 am. We need to be at the hospital by 6 am. However, the surgery might not even start until 9. The Dr. said Emily could be in there until 2 or 3. So we will post when there are updates. 

I meanwhile am nervous but know that everything will be good. I have a gut feeling and cannot wait for Emily to feel better. I remember very well when this ll started and it seems like forever. It is about time for Emily to be able to walk and write and type and dance...

Feel free to comment. Emily might not be able to post for a few days but we will make sure she reads or is read the comments.

Love Marni

Tomorrow.

Tomorrow, is my DBS. I had my per-op appointmets today and they drew some blood, and I talked with my doctors. I'm kinda nervous about tomorrow, and have fully grown butterflies, flapping around in my belly. I will post back as soon as I can, as I do not think I will be able to post back tomorrow.

Love,
Emily

Monday Morning News

So I am sitting here in the quiet of the hotel room thinking and all of the sudden it occurred to me to "think aloud." So I am...Emily, Steve and Marci just left for her pre-op appointments. They are at 9 and 10. They will discuss the anesthesia and sign consent forms and then get some special antibacterial shampoo for Emily to shower and wash her hair with. They will check her blood work, do an EKG and a chest xray - all precautionary. I will let Emily blog to you how it was. Then we are off to lunch and to see a little San Fran. I have never seen the Golden Gate Bridge (I've never been here before) so we will go do what we can. Emily wants to shop too...But before any of that...I'm going back to bed! Talk soon...

Marni

Until Tuesday...

I have to laugh at Emily's post because it was a total "Stevism." I mean grape trees? Really.

You have to understand I have only known Emily for 6 years but she is an amazing girl. A true girly girl, teenager to be she has an amazing spirit, and is very special to me. Almost like a daughter to me, I am honored to be a part of something such as her surgery this Tuesday. Nervous and excited, I drove up to the city by the bay with Emily and her family today. She has a great personality and an undying energy and unfortunately dystonia as well. But only until Tuesday. Then we will dance!

Love Marni

Grape's do not grow on tree's!!

We are in San Francisco, at the Radisson. We are in San Francisco because I will be having Deep Brain Stimulation, or DBS, on Tuesday to to hopefully correct my neuroligical disorder called Dystonia. It was a very interesting drive up. In the car was me, both my parents, and my parents best friend, Marni. Well, I named my post this because on the way up we saw a huge grove of trees and my mom asked: " What kind of trees are those?" My dad responded with: " I beleive those are grape trees." Well you see this is really not good considering my dad is a sxith grade teacher. I might just be one of those " you had to be there moments." Anyways I just kinda started this blong tonight as my almost journal I guess, and to keep people updated on my surgery and how well I'm recovering. I'll write back tomorow.

Emily