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