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.