Tyler is doing well. He is back to where he was before his battery turned off. We are still not sure what triggered him to turn off and we may never know. What we do know is that the DBS is helping him.

      Tyler is doing well in school. He has a full time aide that helps him with his writing and other things that he is still unable to do. He wants to join the chess club which last year he could not do because he could not hold the pieces in his hands. He loves to play chess so he is excited!

      Tyler will start Occupational Therapy tomorrow. This will be the first session in since before summer started. We know that he will be frustrated and fatigued after these sessions but this is what will help him the most. Next week he starts Physical Therapy and speech therapy is not far behind that.

      Thursday he goes to see Dr. Okun for a programming session. He still is following up with Dr. Selke his neuro-psychologist and will see him later that afternoon. The doctors have been very helpful in getting us therapy in school as well as giving us suggestions for Tyler’s IEP.

      Sometimes our friends say that Tyler looks great. We agree but we also see Tyler struggling with things daily. He is not cured and even though he is functioning better on a daily basis he still has a long way to go. School is tiring for him so after school I notice that his speech is slurry and his hands shake when he tries to use them. Sometimes they do not do what he wants and he knows it is time for a break. He is starting to realize when his body is fighting him and is now able to rest it out. That took him a long time to do.

      Samantha has been complaining of pain in her right leg, which is scary. It could be anything or it could be the onset of childhood dystonia. Tyler continues to do well and actually tried hitting tennis balls yesterday. He really enjoyed it but I think what he enjoyed mostly was just being able to do it. Tyler has a hard time holding the racket but he could not even try to a month or so ago. Tyler's secret pal has struck again. He received a musical card the other morning and he is having a hard time trying to figure out who his pal is. We receive quite a few encouraging emails almost daily. Dave Johnson is one of those individuals that we have developed a relationship with because of this tragic disorder. I email with him often and he sends Tyler encouraging emails. We speak and email with many families that contact us through this site and it is wonderful to talk with people that are living with the same issues, both parents and children. Our hearts go out to all of you and every day I try to think of ways to do more. My family will do all that we can until we find a cure.

      Tyler is doing well. He had a programming session yesterday and all went well. He has only had one session that things were a little crazy for him. He ended up going back to Dr. Okun’s office where Dr. Haq fixed the problem. We learned the hard way that Tyler should not have programming and occupational therapy on the same day.

Tyler had the opportunity to meet with another little boy, Chris, from West Palm Beach. He is 8 like Tyler and just underwent the first part of his DBS September 20th. He also has DYT1 generalized dystonia. Rick and I went and kept his family company while Chris was in surgery. Later that afternoon I took Tyler, Samantha and Luke over to sit with the family. His family felt comforted to see Tyler there and know that Chris would be alright and that he was definitely in good hands in the O.R. Tyler went to visit him in the hospital the next day. For Tyler this is very rewarding. He knows that all of his hard work paid off and his experience with the DBS surgery helped Chris with his surgery.

We keep in very close contact with Chris and his mom and they are doing well. They come back for part 2 of the DBS this month.

Tyler is back to Tennis lessons and looks forward to it each week. He also joined the chess club at school. He loves chess and this is very exciting for him.

Over the weekend he was in the Chip, Putt and Drive challenge at Iron Wood golf Course. He did really well. He came very close to getting a medal for chipping. He played well and he had a great time. He is so proud of himself for being able to enter things like this again. It brings a shine to his face and eyes.

Tyler is doing well in school and is having a blast being a kid. Tyler will turn 9 next month and is eager to put last year behind him.

He knows that he is doing great now and that things can still change. There are nights when his chest spasms and he realizes that it is his dystonia acting up. He is learning the hard way still to take it easy and know when enough is enough. There are some nights where he is uncomfortable and his body is tight and painful for him. Remember DBS is not a cure nor will it stop the progression of Tyler’s dystonia.

You may see Tyler and say wow he looks great! We say the same thing but we live with Tyler and his dystonia is still there as well as the pain and frustration for him. There are still a lot of things that Tyler can not do and we work on them daily. This continues to frustrate Tyler. He knows that he is getting better in so many ways but he knows where that stops and deals with the reality of it all.

Tyler’s secret pal continues to drop things off for the kids. They want to thank the secret pal and let them know that they appreciate everything.

- Michelle Staab

      Tyler is having some difficult times these days. The last programming session slowly disagreed with Tyler and now he is having jaw and speech problems as well as problems with his arms and hands. He is in some pain at night and is frustrated throughout the day with his arms. He was writing and typing in school and now that is becoming difficult for him again. Holding a cup is also more difficult as his grip is not what it was 2 weeks ago.

      He went back to see Dr. Haq yesterday and they turned both sides down. No improvement yet but we are hopeful that over time things will get better. I think Tyler is handling things great. When you ask Tyler how he is doing his answer is always “Good”. He has the best attitude and continues to think on the positive side of things. He will go back in one month to see Dr. Okun for another programming session.

      Tyler will have a birthday November 2^nd. He will turn 9 years old. This is unbelievable to me. He is very excited about his birthday and will not let us forget about it. He has signs all over the house counting down the days until his birthday. When I asked him what he wanted for his birthday yesterday he told me “a cure for Dystonia” I told him we are working on that.

Thanks again for all of your support and we will keep you posted on his progress. For now Tyler is being a normal 8 year old boy.

- Michelle Staab

      Tyler has taken a turn for the worse. We have attempted to reprogram Tyler's system a couple of times this week because he has been having more tightness and inability to do some things like holding a cup. It started out that we turned up his settings to try to help with his hands having a difficult time. We let this settle in for approximately 1 week before deciding it was not helping but rather it was worse. Michelle brought Tyler in and got both sides turned down to their original settings. Over the last few days, Tyler has had some problems controlling his arms and his speech has gotten much worse. Tyler still has a hard time eating. Last night, Tyler's arms were moving so rapidly in all directions that he could not find relief and was screaming in pain. We gave him medication and reset his DBS and after a while he was able to fall asleep.

      I think that I have been a little complacent about raising money for a cure lately because I have felt relief that Tyler was doing better. I promise not any more. I have many things that we are working on to raise money for Tyler's Hope and I feel like I am going to be up late nights trying to do whatever I can to expedite the research and awareness of Dystonia. I am excited about all of the opportunities we have to make such a big difference in hundreds of thousands of lives. Even now, Tyler always says he is "good." He may be but I believe he is because he has such a positive attitude about his situation.

      Tyler just went back to see doctor Okun today for a tuning. Tyler had a full day with tuning and physical therapy. We are hoping things go better for him over the next week. Michelle and I are going to Jamaica for the rest of week and we are a little worried about leaving him for a few days while he is trying to get under control. Tyler is still doing much better than before the surgery but he has had several painful episodes of spasming and has lost some of his flexibility in his wrists and hands. Dr. Okun is hopeful that he can tune his stimulators to provide some relief from this.

      I just received an email from a mother of a daughter that has the same dystonia as Tyler but her daughter is now 29 years old. She started showing the symptoms at the age of 11 and has slowly progressed to a wheelchair and now she is bed ridden. She takes heavy doses of pain killers and botox and has some fear for her life because of the concern of the dystonia effecting her diaphram. It broke my heart to get this email but reinspired me to act quickly and find a cure for this disorder.

      Tyler has been doing ok lately in comparison to his dystonia before the surgery. He has been able to play with some friends and have fun. Last night was Halloween and I took Tyler, Samantha, and Da'Shon trick-or-treating. As the night went on, Tyler's left wrist and arm started to really tighten up. He could not hold his treat bag to get the candy and it was frustrating for him because noone understood why he was having difficulty. He did not have control enogh to hold the bag, and get the candy. It slowly became more uncomfortable and even painful. His arm would get soo tight that I could not straighten either his wrist or his elbow. This morning he woke up and was having the same difficulties although it was effecting his left side even more. He has started to curl up like a ball. We will try to take Tyler in and adjust his DBS settings.

      I have been informed of some information recently that has re-energized me and made me very competitive for Tyler's Hope for a Dystonia Cure. We will be doing some big things and I look forward to helping my son and many others in the near future.

      Tyler has been doing well. His birthday was Thursday and he has a tradition of going to Hooters for dinner on his birthday. Of course all of my friends and his enjoy this tradition so we had a good time. We went to the Florida basketball game after Hooters. Tyler has not had painful episodes in a few days but his wrist still locks out from time to time. His jaw and mouth are still bad and he is hard to understand for most people. His voice is really low even when he tries to make it louder.

      Tyler has had some difficulty with some math lately, especially the problems that take more writing and time. He knows what he is doing but tries to get the answer in too quickly. He recieved all A's and A+'s on his report card and was awarded the Accelerated Reader ribbon. Tyler is still an inspiration to me and my wife.

      Tyler is doing well in school. He stays very active but has difficulties with his hands and his voice. He needs help with tasks like putting on shoes and turning pages of a book but he tries to do everything that his friends can do. He is still very skinny and I cannot tell if that is because he is just going to be skinny or if it is because it is difficult for him to eat. His new friend Chris(DYT1) is coming to stay with us this weekend because he needs to see the doctors in Gainesville.

      Tyler has had some bad headaches and a fever. This is difficult for us because these are the same symptoms as a brain infection that can occur from the DBS surgery. It is most likely a virus that has been going around. It makes you worry when you don't know.

      Well Tyler has his first football injury. He sprianed his left ring finger pretty bad. It was not fun getting his x-ray done since his left side is so bad they had to tape it in all types of positions. The x-rays did not come out that great, however, they did not see a break. We are going to be referred out to ortho for followup. I will only do so if he does not start feeling better soon. He did score a goal as he lept over the goal line causing his finger to bend completey back in the wrong direction.

      He is in a splint but I am not sure how long he will be able to wear it due to the posturing on that finger.

      Tyler's friend, Chris, from Palm Beach, is staying with us tonight at our house. Chris is Tyler's age and has DYT1 dystonia and recently had the DBS surgery. He is doing really well right now. Chris is able to do many things that he could not do before the surgery.