The secret pal struck a couple of times this past week. The Pal brought some neat prizes and always gets some kind of artsy/creative things for the kids. They still get very surprised and it means a lot to them.

      The whole family has been sick and fighting some kind of a stomach thing. It seems like everyone was feeling better yesterday for Christmas though. Santa Claus came and brought the kids a few play things. He said they were good??? Just kidding. Tyler has been good and is still a huge inspiration to all of us. Samantha is just like her mother in that she is always doing for someone else. She is remarkable the way she does things to help all of us. Luke is a handful. I am not sure he has developed a conscious yet. He is a good kid but likes to get into things. He knows he is cute so he just smiles while he gets in trouble.

      We took all of the kids to church yesterday then went over to some friend’s house for a while so our kids could play with theirs.

      Tyler has had a couple of things going on with his Dystonia. First, his arm(right-normally the good one) has been ballistic and shaking a few times. Tyler also had an issue twice yesterday with his eyes. His eyes uncontrollably shut and it scares him because he cannot see. He says it does not hurt but is scary. I tend to forget all the muscles this horrible disorder can affect. Only a week left until he goes in for the third DBS.

      Many people have sent in donations this past week and it is much appreciated. I good friend just Tyler’s Hope $20,000 over Christmas. That is a big check. We are aggressively looking for good research to find a cure.

      Today Tyler got his MRI in preparation for his upcoming brain surgery for the placement of the third lead and new control box. They need to turn off Tyler’s system before they put him in the MRI. After he got his system turned off (zeroed) he went downstairs to get his MRI. He has been worried about getting a needle again for the contrast. The people scheduling the MRI had put someone ahead of Tyler because he was a couple of minutes late. Brilliant. At this point, Tyler’s system was off and his movements/Dystonia was starting to act up. They knew he was getting zeroed upstairs but went ahead and got someone in the MRI delaying Tyler’s scan another half an hour. The longer he is off the more Dystonia/ballistic movements show up. When he was able to get his scan, they had to redo it because he was “moving around too much on the first scan”. I think Tyler should be our next President if everyone is as bright as these clowns. Just kidding but everyone probably has been through a similar situation and you wonder how people can dress themselves in the morning. I am actually in a good mood and just joshin. We are all getting a little nervous about January 2nd.

      My parents came to visit us for the day. They brought the kids presents (and Michelle and I) for Christmas and are headed out tomorrow. It is always exciting and fun to see them. I try to pack so much in a small amount of time. The kids were happy to see them and we all miss them.

      I am sorry for the inconvenience of our website being down for a couple of days. I received many, many emails inquiring what was happening with the site so I am glad to see we have so much support and that people read the diary often. I did not know that I needed to extend the domain name so it was shut down until we paid the $10 to continue it for two years.

      Everything is going well for us. Tyler is still “the man”. Some kind of flu has infected my household so Samantha, Tyler, Luke, and now Michelle are sick. The bad thing for Tyler is he cannot afford to throw up or skip any meals and he has done so the last two days. He started to take his shakes again this morning but his stomach is still upset. He is becoming a little anxious about his upcoming surgery like all of us. I think they are more excited about Christmas though. Tyler gets his MRI for the surgery this Friday.

      Happy Holidays and thank you for the many emails.

      Last night Tyler was going to bed and we heard him screaming for help. When we got to him, his left leg was raided until it was hitting him in his head with his knee. He said he could not open his eyes either. We checked and his control box had been turned off somehow. This was very scary for him but it also means to me that the electrode he has now is working to some degree. I always kind of thought that it was soo far out of place that he was not getting much help from it. I was wrong, he is getting help from it, it just appears that his Dystonia is so severe that all of his symptoms are much worse if he is turned off.

      This morning, Tyler could not stop his head from tremoring and moving like a Parkinson’s patient. He also could not control where his eyes went.

      He continues to do well in school. He got a B+ on his science test that I am not sure I would have passed. He is really smart but it is getting more difficult to study or stay in school.

      Tyler remains positive all the time unless he is scared. It is remarkable how positive he is and it should be an inspiration to anyone that thinks they have difficulties. His deal has taught me one simple thing and that is to be positive and make the best out of any situation you may be faced with. Until a Cure,

      Thanks

      Today we met with the neurosurgeon (Dr. Foote) and the neurologist (Dr. Okun) about Tyler having a third surgery. They believe Tyler has one of the top five percent worse Dystonia cases. He is still progressing and is uncomfortable. They were kind enough to meet us in their office, bring in some pizza, and spend an hour on our options. They are great doctors and I feel comfortable with them because of their compassion as well as their ability to speak bluntly about things that are real but not emotional. We were able to bounce different ideas around and come up with the best way to attack the progression Tyler is dealing with. Our Options were several…Take out the lead (replace it) that seems to be not working well (right side of brain-left side of body)…Add a third electrode in front of the one that does not seem to be working well….use all three leads or just two….replace the battery pack (sinetra) with a larger pack (kinetra) that can run two of the electrodes at once… etc…

      I could write about the options forever but I will tell you what we have decided and will talk to Tyler tomorrow about. We want to add a third lead on the right side of the brain which will give the doctors more options to have a positive outcome. The range of coverage is increased with two electrodes and the options to turn different points on are increased. One of the downfalls of having the two leads connected via the Kinetra system is that the frequency cannot be changed between the two electrodes. The frequency can either be turned up or shut off on each of the electrodes but they could not be set for different frequencies. I am personally hoping that the third electrode will be in a better position to give some relief and the second may not be needed. The Kinetra battery pack is much larger than the single pack that he has in his chest now. One of the reasons we like having the kinetra pack is because there will be less surgery and incisions than having three different packs for each electrode. Tyler is very skinny and it is hard to put the packs anywhere that isn’t on some bone but the chest is better than his back or abdomen.

      Right now we are scheduled to get Tyler this surgery on the 2nd of January. We will also ask Tyler if he wants to get it done before Christmas but we think he will want to wait until after the holidays.

      I won’t kid you, sometimes it is pretty damn tough to see your first born, ten year old boy in pain and unable to do things but the surgeries scare his mom and I a lot. I know in my heart he will probably be ok because his doctors are the greatest but he doesn’t seem to ever catch a break. Maybe this will be his break until we find a cure. Keep him in your prayers please.

      Tyler went in to get reprogrammed for his DBS yesterday. They tried to tweak his setting even higher and add another point of stimulation to get a wider range of effectiveness. This again is the last ditch effort before surgery. After he is turned up like this, Tyler has spasms and ballistic movements for a few days until it settles down. He is uncomfortable and cannot seem to sit still for any length of time. Tyler has been acting out the last couple of days and talking about being adopted or running away for some really petty things. I believe the increased setting have effected him emotionally and made him depressed and frustrated. It is hard to tell sometimes how much we should let him get away with because he may be acting out to try not to do some homework or something that he doesn't want to do but is necessary. I do not write about this to get people to think that Tyler is acting like a bad kid but for those who read this diary it should indicate that he is normal and gets very frustrated. Tyler is a wonderful kid and some of his frustration is having to get help with things when I know he either wants to do things for himself or do things for others like his siblings. If you knew Tyler you would understand that I am not saying this because he is my son but because I truly believe he wants to do more for other and share his love but cannot.

      We are not going to do any surgeries until after the holidays but we are continuing to talk with the doctors and get some consultations from other specialist on Tyler's case and what is the best way to handle it. We all know that we are going to have another surgery but we are in the process of deciding what type of surgery and what is the focus/target of the next surgery. It may take us another six weeks to cut all of his hair off now anyways.

      Michelle, myself, and a few of the Tyler's Hope board members met recently with the President of the DMRF (Claire) and Jessica Feeley. We are working on ways to collaborate and I feel we have a lot of great things being worked on for Dystonia. It was both encouraging to meet with them and helpful.

      Until next time, thanks for the support

      Tyler has not been to school in a few days and had to leave church early on Sunday. He has been getting very confused and looks drugged out. It scares him and makes him cry sometimes. Yesterday he had a paranoid episode. He has not been himself for a few days and I think it is because of his new DBS settings. Sense the one side has not been effective the doctors decided to really increase the output one the electrode for that side (right brain/left side). Last Thursday they increased the output to one of the highest levels in hopes that it would reach an area that would better his movements and twisting. It has not done so. I believe that the new settings are causing his disorientation and other issues now. We are going to take him in and lower his setting again. The next move is to get with his neurosurgeon and neurologist and decide a new path/direction with his treatment. I am leaning towards having the one lead replaced but there are many options including adding another lead, pushing down the lead that is not working to a deeper location, or waiting. We have discussed this with Tyler and his biggest worry at this point with another surgery would be the Staples. Yeah, the staples. Crazy isn't it? They can solve that issue with glue or tape or something. Anyways, keep him in your prayers because he really seems bulletproof most of the time but it was hard to see him emotional this past week. Dystonia sucks and I give it the finger! Just Joking somewhat. I hope everyone has a great Thanksgiving.

      It has been a pretty uneventful week. No real changes in Tyler this week. His hair is getting too long so we are going to make him cut it soon. We went over to a friend’s house last night to watch the Florida football game and the kids from the neighborhood played. Luke was as crazy as always just running around the house getting into stuff, I could hear Samantha giggling around the house the whole time, and Tyler was playing with some of the other kids. Tyler was trying to walk and keep up which is difficult for him because he is very twisted on his left side. His leg turns in so much on that side of his body that we noticed this morning he had a very red rash on his inner thigh where his leg had been rubbing when he walks. We gave him some baby powder and will try to keep him relatively still today.

      Michelle and I survived the sleep over with all of the boys. Tyler had a great time and all of the kids are good although they are rambunctious 10 year olds. They play well with Tyler. The day started with them trying to tackle me and some of those guys are tough. I came downstairs sweaty and worn out within the first half hour of seeing them. They were split into two groups and went to all of our neighbors and had a scavenger hunt for points to win prizes. I cooked hamburgers and hot dogs while they did that. They came back to the house and eat and were spilt into two groups again, one group had to make up dances and the other group had to make up a rap song. Luke won the dance contest. We set up a projector and screen in the game room and watched Transformers and Spiderman 3. I think that I went to them five times to ask them to stop wrestling. They were wrestling until after midnight.

      Tyler went in on Thursday for a new programming and Dr. Okun wanted to try to increase his setting to try to have an effect on his walking and his left side. Tyler had a brief meltdown in the office and said he wasn’t going to leave until he could walk out. Michelle had to pick him up and strap him to his chair. This morning I was telling Tyler about some land that was going to be developed near us and he started to cry. He said it was killing trees and was concerned about the rain forests. The new settings are making him emotional and sometimes it makes kids depressed. It is obvious to us that the new program has made him sad/ cry. They will probably want to try a new setting this week but we will give it a little time to see if it settles in at all.

      Tyler has been wound up lately. I think it is due to a couple of factors. This week he has a lot going on in including Halloween, his grandparents (my parents) were in, homecoming for the University of Florida, and most importantly, his birthday party is Friday. BIG 10 years old. Tyler is having about eight to eleven boys over to the house for his party and he is very excited about it. We are going to have a scavenger hunt, play some games, and eat bad things. Michelle and I are pretty excited about this also. 8-11 nine year old boys are lots of fun for the first ten minutes. Just joking but if you do not see an update this weekend, call the paramedics for me and send someone to untie us please.

      The OCC bike is going well. I heard back from Emmitt Smith's assistant today. I need to get them some more information but they are trying to get Emmitt to commit to being a part of it.

      We are talking with Tyler's doctors some time this week about different ideas to help him including the possibility of the next DBS surgery(#3) If we all decide that this is the best course of action then his one electrode that is working will be left on while they redo the other one.

      We took the kids up to a Halloween party last night. Luke was a little frightened at first but then had a great time. All of us rode the hayride, danced, and Samantha and Ty went through the haunted house. There were lots of kids and our kids got to mingle with them. There were some stares from the kids that don’t know Tyler and I am starting to notice the stares more. Kids don’t look away, they just keep staring. Little chumps. Just kidding, I know that we need to deal with this and it is difficult for kids who don’t understand or are exposed to handicaps.

      It was somewhat fatiguing for Tyler so we went home and went to bed. Tyler started to have some issues with his eyes. He went to bed and woke up about 5am saying that he could not open his eyes. He rested and then was able to open his eyes but he seems very out of it this morning. He must be tired but it is obvious that he continues to progress in areas we forget about that have muscles like your eyes.

      It still amazes me that Tyler smiles and has a great attitude about everything even in the most difficult times. I know this helps me and I have received some emails confirming that I am not the only one. If you have never met Tyler, hopefully this passage will help understand my son. The following I received today from a lady that summed it up nicely:

      "My daughter is in fifth grade. Each year I have taught her class. This year they did not need a fifth grade teacher so I was going to stop teaching. I have been reading a lot about Mother Teresa and how she was told by Christ to reach out to the sick and to show His love to them through her smile. He asked her to care for them and then HE asked her if she would refuse Him. Well one day all I could think of was "will you refuse me" over and over and he asks me if I am teaching for my daughter or teaching for Him. I say ok God I will continue and I call Lisa and tell her I will continue in 4th grade. Next thing I know class begins and your wife pushes Tyler in.

      He has the biggest "smile" I have ever seen and I knew at that very moment I was in the right place doing His will.

      It just about knocked me over. Rick your son is showing Christ's love not in his running around and not in his words but in his smile. That is why no matter what part of his body changes his beautiful smile continues. Yes, it will be a big one in the end."

      If you are religious or not, you should understand what kind of a kid Tyler is. Special.

      Luke was diagnosed this morning with Strep throat. Nothing slows him down though. Anyways, it got me thinking. I wonder how many people with dystonia had strep throat. I know that most of the people we have talked to have elevated titors for strep. The reason for my question is that Tyler was originally diagnosed with Sindenhamm's Chorea which is like Rheumatic fever. Rheumatic fever is strep throat that goes untreated. He was originally diagnosed with this because the symptoms can be very similar to dystonia. What if strep throat was the catalyst for the symptoms of dystonia in patients with the DYT1 gene? We could possibly immunize or do something to prevent strep at an early age that would prevent the symptoms of Dystonia. I know a man that started getting DYT1 dystonia at an early age and got some immunizations that he claims stopped the symptoms for approximately 30 years. These are the crazy thought that I have all the time. I am suure there are other parents that think about things like this because they want soo much for their children to be better. Crazy or not, we will find a cure.

      Tyler has progressed significantly on his left side. The last couple of days have not been fun because he struggles to find comfort. He is often in pain because of his left arm and finds it difficult to get sleep because he cannot get comfortable. His body is twisted to the right from the left and his leg is twisting so much that it moves and gets in his way even if he is sitting or lying down. We are talking with Dr. Foote and Okun about some things we can try including adding a third lead (I don’t like this) or replacing the lead that is not effective with a different location. We have a lot of talking to do before we even talk with Tyler about it but we will need to try something soon.

      Samantha woke up this morning complaining about her right foot/ankle hurting. When she walks it rolls to the outside and she swings the leg a little. Scary. She says that she is doing it because her foot hurts but who knows weather it is Dystonia or not. I have had some concerns recently because of the way she throws a ball and she has fallen more than normal but Michelle and I are probably always looking for signs of Dystonia.

      I have received a few emails asking why DBS was not effective for Tyler. I would not say that DBS was not effective because he seems to have relief and positive gains when programmed for his right side. He also received some benefit the first time we did the surgery but it seems to me that we probably have the new lead in the wrong area on that side. DBS is a good surgery and effective for many kids that we have met and seen. It is probably helping Tyler but is overshadowed by his left side’s ineffectiveness.

      What a trooper my son is. Lately it has been weighing heavily on me what he deals with every minute of every day. If you do not know dystonia, you tend to forget all of the things these courageous kids have to deal with. I feel like I should do something yet I cannot. I would definitely kill to give him an opportunity to live without having to deal with some of this stuff. That is the only way I know how to express the gravity of the way I think about him. His body is getting worse as he is becoming more twisted. He still smiles and laughs all the time. His muscles must ache as I see him flexing and twitching all the time. He still smiles and is funny. He cannot talk well enough for us to understand him 90% of the time so he either doesn't try or gets frustrated at times. We get more frustrated than he does and he keeps smiling. Tyler's sister helps all of the time because she is now used to it but gets frustrated sometimes when she has to do things she normally wouldn't have to. Tyler understands this about his siblings and doesn't want anyone to have to help. he feels bad for his siblings. I sat with Tyler for an hour last night at bedtime because he could not get comfortable to sleep. His right arm was twitching and pulling so I had to hold it down. I write about this because if you see Tyler or talk to him, you would never know. He never complains and always smiles. What a true champion. I see other kids playing sports and I know in my heart that if he could play they wouldn't have a chance. Tyler's strength and heart are unbelievable. You cannot teach that and it wouldn't be any different if he had dystonia or not, he truly is special. I already see these qualities in his crazy sister and younger brother so watch out world. I am competitive and tenacious but they get all of their heart and spirit from their mother, Michelle. I am afraid that Tyler is progressing and will need another surgery. The good doctors are going to try a few more things to make the DBS more effective but it may be necessary to do the surgery in the future.

      Tyler is sick today with some kind of stomach virus. He is staying home from school. I think this is most likely what Luke had this past week. Luke is sleeping better so we believe that his weird episodes were induced by a virus. Samantha lost a tooth and the tooth fair brought her some college funds. The secret pal showed up again with some creative gifts. Have a good week and remember that you have to be as positive as Tyler and it will make everything better for you and those around you...

      Tyler has had a full week this past week. Dr. Pedro Gonzalez came to Gainesville for his talk and visit. We had a great dinner and he came back to the house and met Tyler afterwards. Dr. Gonzalez is just as good as we thought. He is a kind and intelligent researcher with the compassion and drive to find a cure. He really enjoyed his visit and everyone was very energized by the things we think we can accomplish together. Dr. Gonzalez was shocked by Tyler’s long hair as most people are now. His hair is short in the picture on the site so I will need to post a more update one. Tyler went to the doctor yesterday to be programmed. He gained another pound.

      We are going to try to take the kids to the beach this weekend for a little break. The weather is supposed to be rainy but it will be a fun break together.

      The secret pal brought art supplies to the kids last week. The secret pal is very good because we still do not know for sure who it is.

      Luke has been our biggest issue this past week. He woke up a few nights ago and was screaming but not responsive. His eyes were open and they would look up and to the right but he couldn't see us or really respond. I could wave my hand in front of them or move around but he had a blank stare and wouldn't blink or anything. It ended after about a half an hour when he started to throw up. This has occurred the same way the last three nights including the episode ending with him vomiting and then becoming coherent. Michelle took him to the pediatrician but they said it was not typical for anything. They believe it may be "night terrors" but the vomiting is very different. It could be a virus so we are going to wait a few days to see what happens before they want to do a CT and workup. Sometimes we feel like we can’t catch a break. The funny thing is that you feel better about everything when you find out it is not a big problem.

      We have a lot of big/exciting things going on with Tyler’s Hope. I have contacted many prominent doctors and families that are doing great work for Dystonia research and awareness.

      Tyler went to see his endocrinologist yesterday and he feels we should keep an eye on Tyler but everything should be ok for now. His bones seem fine but we should watch for them being brittle in the future. The reasons for being brittle would be lack of use and because he is so skinny. They suggested that I use a pillow under him when I carry him because it will more evenly distribute the pressure on his legs. Tyler cannot use his walker now because his legs are so turned and it is very difficult for him to navigate and move the walker. For now, I am just carrying Tyler wherever he needs to go. I am a little concerned about how we are going to do this because his Mom cannot lift him anymore (to tall and awkward). I am concerned that he will not be able to propel his wheelchair either so we may need to look into electric chairs. If we figure out how to get him more mobile then I am sure we will need to do some adjustments to the house.

      The secret pal struck again about a week ago. The kids all love this and the pal brings something for all of them that brighten their day.

      Tyler has excellent grades again but it continues to be a struggle to communicate. Our school gave his aid a new teaching position so Tyler is in the process of getting familiar with his new aid and his new aid with him.

      Dr. Gonzalez is coming to Gainesville on Monday and Tuesday so we are very excited about meeting him. In case you forgot, Dr. Gonzalez is the leading DYT1 dystonia researcher.

      On another note, the Orange County Choppers have said they want to do a bike for Tyler’s hope and the Gators. OCC would do a show that is nationally televised and we can get some past players like Emmitt or Urban to participate. We will raffle off the bike and then hopefully give it away during homecoming 2008.

      Tyler has had a busy week. The adjustments did not help but they are still optimistic that we can find a setting that will help on the left side. His left leg at the hip area is twisting so much that when he tries to walk, it rubs his groin area badly. He wants to continue to try to walk even though it is laborious and difficult for him. He has developed a painful rash from the rubbing. I put some talcum powder o there that seems to help. I wrote about this because there are a lot of little things that really affect his/our lives that people don’t think about.

      Today Tyler is going back to Shands to get his tube replaced. It will be an outpatient procedure and he will have a new tube.

      Dr. Pedro Ganzalez is coming to town in a few weeks and I look forward to meeting him and thanking him for his incredible research. Dr. Gonzlez is at the University of Iowa and he currently has NIH grants to do focused DYT1 Dystonia research.

      Gator season started again here in title town USA. Tyler and Samantha met us at the game and we all went to the Wachovia Box. Both of the kids hit it off really well with Sam Goforth, Wachovia president, and oscillated between playing with Sam and watching the game. It was fun to have them watch the game with us and they both had a really good time. People treated them like a king and a queen. We saw a friend of mine, Stephen Burkhardt, while waiting in line to get on the elevators and he took Tyler and started blocking people so that Tyler could get right on the elevators. It was really nice and everyone kept saying hello to Tyler. Michelle and I are no longer individuals but rather Tyler’s parents.

      Tyler has been pretty twisted this week and today his arm pulled so hard that it locked behind his back. Michelle ran some medication over to him at school and things calmed down for him. He really slows down when he gets the medication so it isn’t good for him but it also really helps him. He acts a little strange on it but his speech and his walking is much better when he takes the drugs. I have tried to message and straighten his wrist at night when he falls asleep but I cannot do it anymore without him grimacing and waking up.

      Tyler continues to do well in school and he continues to get all of his shakes and extra calories. We should weigh him again soon and hopefully he will have gained some weight. We try not to make to big of a deal about it so that he won’t get disappointed if he doesn’t gain weight. They are still checking with an endocrinologist to make sure nothing else is going on that will cause his lack of weight gain. They did a bone density scan earlier this week and we should find out the results tomorrow.

      Samantha and Luke are doing well also. Samantha gets into her school work and works very hard. She is bright as well. They all like to draw which is odd because neither Michelle nor I are artistic (although we are pretty good with the war face paint before a Gator game). Luke is still aloud back in school and is enjoying it. He has met some new buddies and forgets about us while he is in school. We check him for sharp objects, weapons, and anything else before school that could get him in trouble but he seems to be adapting pretty well. He is still very very active though.

      I haven't discussed it at length with my wife yet but I think I was overly anxious and optimistic about Tyler's new programming. He has been reprogrammed on his right lead, which controls his left side, and so far there have been no improvements. We knew this was possible but you always want immediate results for your child. There are still some settings to be tried that may improve his results and it is possible that it will take some time before we see the difference. I still hold out hope that this will make a big difference but I am glad we did not discuss this with Tyler this time and have him as optimistic as I was. I was about 80% sure that this would help and now I am about 40% that it will. Damn I'm motivated to get some of these researchers switched over to Dystonia and get them working on a cure. I have spoken with a few mothers of children this week that have run into some similar setbacks with their children but these times just illustrate to us the rollercoaster ride it is.

      Wachovia Bank was kind enough to ask Tyler, Samantha, Michelle, and I to there box this weekend for the Florida football game. Tyler and Samantha are really looking forward to it and it will make things bearable for Tyler. We are very appreciative of how our community and especially our friends and family have embraced this challenge with us. I have learned so much in this process but don't misunderstand me; I would rather be a vegetable than have my son and the other kids going through these things. I talk with friends like Dave Johnson, Susie, Dave, Samantha, Mike, Chip, Tyler, and many others young and old that have Dystonia that are encouraging and inspirational. Neighbors and friends become secret pals and ask how they can help. If you have never been passionate about something like this before, try getting involved and see how it changes your perspective on everything. I appreciate the support groups we have and as one of my best friends put it recently, my wife is phenomenal. She does more angelic things (other than putting up with me) every day than anyone I can imagine and she never complains about anything. It is better to make the best of your situation no matter what it is. Tyler is an example of this daily and it makes everyone around him better people. His symptoms have not changed much but some are exasperated because he started back to school. We are very happy that he gained a few lbs last week and we hope to keep him on this upward trend.

      The week after the storm and everything is going fairly well. Back to everyday life after the hectic but great golf tournament. We have a lot to do still but it does not have a deadline. Michelle is following up on receipts and invoicing and other committee members are discussing follow up with people who did not get into the tournament, companies that want to be a part of next year’s event, changes we want to make to make it better, and picking a new chair person. Brian Scarborough, a very good friend and compassionate about Tyler’s Hope has chaired the last two years and done a fantastic job but we do not want him to burn out.

      The first week of school went well but Tyler got some sort of stomach bug and got sick on Thursday so he came home from school. He is working hard and keeping up with his school work so far. Samantha is really accelerating in her school work because she likes it and reads all the time now. Luke is in a different world and starts school this coming week. Our hopes at this point are that he does not get expelled in the first week. He may surprise us all and share and play well with others. He gets away with anything because he really is cute.

      The secret pal has struck a few times since our last update and a boy from NC has been sending Tyler nice notes. Tyler has been in a great mood since the tournament. I think he likes the attention. I have spent the last couple of nights massaging his left wrist but if I try to hard to straighten it then he grimaces in pain. The doctors are going to try something this week that is different and we have high hope for him. We believe the lead controlling the left side of Tyler is not effective because of placement. This is what the doctors told us this week which is encouraging:

      The great news. Lead locations are beautiful and the leads have NOT moved.

      We examined the exact location that is giving Tyler the benefit for the right arm--it is contact 1.

      When we match the brain sides we found that contact 0 on the right lead for the left arm and leg is in the identical spot as contact 1 on the other side.

      We propose since we really haven't tried contact 0 to switch to contact 0 and see if we can get the benefit we believe we are hoping to see.

      This is potentially really good news as contact 0 has been largely untapped.

      I am cleaning the cobwebs out of my brain from this weekend's golf tournament for Tyler's Hope. The tournament was fantastic and we raised a lot of money. We have created a lot of momentum and support and many people have really committed to the cause. We were able to do four or five live interviews on the local TV stations. Tyler was fantastic. He was really tired when we were finished but he was able to take pictures with everyone and do some of the interviews. He was always smiling hugely and was a real inspiration on Friday night for the auction/dinner. We have received many promises to do even more for next year's event.

      Tyler and Samantha started school today. Samantha is in 1st grade and Tyler started 4th grade. They are very excited and have homework tonight. Both saw a lot of their friends that they have not seen all summer. Tyler has the same aid as he did last year so that should help. He got two shakes this morning, none during school, and then we will try to make up the other shakes before tomorrow. He is up to 9 shakes a day. He has an appointment with an endocrinologist coming up soon to check and make sure there is not something else causing his lack of weight gain. He has a hard time and gets nauseous when he gets two in a bolus feeding.

      Michelle worked harder than anyone I have ever seen this weekend and was rewarded with a standing ovation that I did not think was going to ever end.

      The whole family (Michelle, Tyler, Sammy, Luke, and I) went to Charlotte for the weekend to celebrate my parents’ 50th anniversary. We had all of the cousins together and made it like a family reunion. What a great time and tremendous accomplishment. Everyone got to see Tyler which was good for everyone. Kids and adults got to deal with his handicap and Tyler enjoyed playing and catching up with all his loved ones.

      Tyler was weighed right before we went to charlotte and he has not gained any weight. He did not lose any but he continues to grow and he needs to add a lot of weight. We are upping his shake intake to 9 a day from 7 and we are going to check with an endocrinologist to make sure he doesn’t have something else affecting him as well.

      Tyler had a really good day today. He walked more than usual and his speech was recognizable for more than half the day. It also seemed as though his jaw was much better and he was able to eat easier. I believe it is because he was able to sleep and rest a lot last night as well as have a lot of ativan in his system.

      When we arrived home in Gainesville we found a package from the secret pal. This one was really neat because it said that Tyler could share it with his Dad. (It was a remote control truck set) Thanks again to the secret admirer. What you do is very appreciated by all of us.

      I have thought a lot about Tyler’s symptoms progressing. I believe that the DBS stimulator is working well on one side and not on the other. The right side of Tyler is substantially better off than the left side. His left leg, arm, wrist, etc... twist and turn a lot while his right is much better. I spoke with one of his doctors at length a few days ago and we think that the stimulator affecting his left side is not positioned correctly. We do not know how to correct this yet but it has been adjusted a hundred different ways with really no effect on that side. This can be good and bad. The good news is that he can really be helped in the future I think. The bad would be another surgery soo young. We will see what needs to happen.

      Tyler has been with his Mom and siblings in Miami for a few days. They are having a lot of fun. I miss them. I like being able to work without thinking that I am missing time with my kids and wife but it is hard to be away for this long. Luke does and says crazy things all the time, Sammy is my little girl, and of course T (Tyler) is always funny and great hearted.

      The genetic tests came back for the facial disorder we were testing Tyler for but he does not have it. Good news, yeah! No change in his flexibility or different abilities but he is getting the nutrition he needs for now. They get back from Miami on Wednesday and next week they will be going to Disney World and the adventures around Disney land. This should be difficult because of the wheelchair and fatigue factor but Disney does a great job of helping the handicapped.

      The tournament is going very well again and we are looking at many different ways to work with a researcher out of Iowa. I met with a gentleman in Miami that continues to help our cause and keeps me motivated to raise the millions that is necessary for the new research building.

      Tyler has been doing pretty well but had to do a session with his doctor where they check his quality of life and functions. This is always traumatic for him and wears him out. They do different tests with his writing and functions and sometimes it is frustrating for him to the point of tears. He did really well and his right arm has improved.

      Tyler has been complaining about his right foot lately. He states that it hurts and it is very sensitive if we touch it. We will take him in and see if he needs to get a brace made for his feet. It may be because they are pulling and twisting but we don't want him to damage them by trying to walk on them before we find a cure. (Do you like how I threw in finding a cure?)

      Tyler has been back twice for programming. He was turned up until his left arm and leg got worse. Michelle took him back in yesterday so that he could be turned back down. They turned his system back down and he is doing much better today. He is starting to gain some weight which is very good. They measured his head and it is still growing so we have some concerns that he will groe out of the lead placements again. Tyler doesn't get a brake ever so I hope these leads are good for a while. He has a friend that is coming over to play with him this Thursday and he is really looking forward to it. His name is Wilson and his mother helps us a lot with Tyler's Hope stuff.

      Tyler and his brother and sister had a great time at the beach yesterday with his cousins. We went to the swimming pool and out to dinner at the Conch House. Tyler has been eating well. I am keeping my fingers crossed that it will keep up because it seems that something always happens to interfere with the progress. He had an episode in the morning the other day when his eyes kept blinking. That was scary but it settled down after some medicine (Ativan and Baclofen). The meds knock him a little loopy at first and make him high. They are testing him for a gene called PKAN that is very rare and would be even more rare combined with dystonia but Tyler has a lot of facial dystonia. PKAN is a form that affects the face more. They are checking him because of his moth, jaw, eyes, and other things that seem effected. We should know in a bout six weeks what the results are. Tyler has been drawing. He loves to draw his cars and trucks. He knows more about cars than I do. He watches those shows on TV where they make cars over and he plays the games where you make cars and race them.

      Tyler has had a full couple of days. For the fourth of July we went to the lake with the Marti family and met my sister Anne and her family. Tyler’s cousins, Christy and Joey were there. The weather was off and on but we had fun playing with them. The kids played in the water at the beach while the adults cooked hamburgers and hot dogs. Samantha has had bronchitis but is doing well other than that. Tyler was able to go with the kids on a long tube ride around the lake several times. He was having a blast. One time they got a couple of feet off of the water and I think it scared all of us. Tyler’s eyes got wide and everyone got quiet but then they couldn’t stop talking about it. Tyler was worn out from all of the activity so they went to sleep as soon as we got home.

      We are keeping our fingers crossed but so far Tyler has been able to get all of his shakes and has had no real problems with his tube lately. His appetite seems to have increased as well. He eats more than what he used to eat so I am hoping he will start to put some of the weight back on. He appears healthier than any time recently. He needs all of his strength to fight off his little brother Luke. (this kid is crazy- cute but crazy)

      Tyler had his surgery yesterday to replace the stomach tube and put in a button tube. The surgery went well and the tube he has now is much smaller so it is less cumbersome. We will be able to try giving him some shakes in it today but we had to wait for his medication wear off yesterday. Tyler goes in for another programming tomorrow.

      Again the golf tournament looks like it is going to be a good deal and raise a lot of money for Dystonia research. Last years tournament went very well and was a huge success. This year promises to be as big or bigger. We have secured at least one title sponsor for the next three years. It is getting close to being sold out again months in advance.

      Tyler has been doing better. I was able to spend some real quality time with him and with his little brother Luke this weekend. We went around the golf course on the golf cart, played some car games, and read some books together. We played pig on the little indoor basketball hoop also. Luke is a little playing maniac. Michelle was able to spend time with our Daughter Samantha doing the girl stuff while we did the guy stuff. We didn't drink beer or pass gas but we checked out the ladies and talked about sports and stuff. Tyler's spirits seem higher this week. He has been able to get his recommended number of shakes in and he has been eating as well. He woke up this morning after a long night of sleep and was able to talk and walk a little better. He was still very hard to understand and his walking was still very difficult but in comparison to other days, he was better.

      Since Tyler is not able to do a lot of the chores that I would have him do for an allowance, I have some different things set up for him. I told him that if he did not watch TV during the day until I got home from work or 6pm whichever came first, then he would earn money. Samantha can do the same. I also will pay them for each book they read this summer or article in the newspaper. So far, they have made some money off of me. They have to figure out ways to stay busy and it forces them to play together more. Tyler has done without the TV more than Samantha so far but both of them have been reading more. It tends to wear them out more so they go to bed earlier. If you have any suggestion, please email us.

      There has been a lot going on and I am out of town. I am typing this on my cell phone so that we can keep the diary updated. Tyler has lost a couple of pounds and has been up at night complaining about stomach pain. He has had a fever as well. Michelle took him into the doctor and they admitted him to Alachua General Hospital. They gave him some IV fluids to keep him hydrated. He broke his fever so they let him come home today. The feeding tube is still in the stomach so they believe he just had some stomach virus or something. We never know what can be going on and his body is fragile right now so they don’t take any risks. He was programmed yesterday also and we are keeping our fingers crossed but he is walking better right now.

      Tyler has had a big week over at the beach with his brother and sister (Luke and Samantha). At first it was more frustrating to Tyler because of the things he couldn't do or were hard to do. He ended up swimming and plying in the sand. The hardest part was getting him to the beach. The wheelchair was good to carry him down to the beach on the walkway but you had to carry his wheelchair up the stairs and then leave it on the boardwalk because it did not role in the sand. When I was there with them, I would carry Tyler. We are going to look for a large wheeled chair or something we can use on the beach. If we cannot find something like that then we are going to try to use one of the big jogging strollers with the big wheels.

      Tyler gained another 0.8 lbs which doesn't seem like much but at least it is something. He is eating better but he can't use his tube as much. He forces himself to eat better. I do not think that he has any easier of a time eating but rather he is trying harder.

      Last night he woke up in pain from his left wrist and thumb hurting.

Well, lots to tell.
      Yesterday, Tyler went to the doctor and got his checkup. He gained .8lbs which is not very much but at least it was something. Our concern now is that Tyler seems to be developing reflux. This poses a different problem because he can taste the shakes in his throat when we feed him through his tube. Tyler cannot take any of the medication that they use for Reflux so we need to try some different things. I am not sure what we are going to do at this point but we may try some thicker shakes to keep them in his stomach.

      Today, we are going to Tyler's school because they are going to present us (Tyler's Hope) with a check from the walk-a-thon they had earlier this year. They decided as a school to do the walk-a-thon this year for Tyler's Hope. It was a great honor and it keeps getting better. Mr. Hall, Tyler's teacher, let us know yesterday that they are making an award for a student that shows the most academic achievement and integrity throughout the year. This award will be called the Tyler Staab award and it will be presented to a new student each year. There will be a plaque at school with each of the names of the recipients on it throughout the years. That is a neat thing and a tremendous honor. Mr. Hall is also giving a $50 donation on behalf of the child chosen to Tyler's Hope. This years recipient is a boy named Ryan Joo.

      Last night we had a tremendous event for Tyler's Hope at a local steak house, MT Chophouse. The owners of MT Chophouse put together this event in a week and a half. They had tickets made up, posters, fliers, and set out Tyler's Hope banners. Several hundred people showed up throughout the night. They had wine and scotch tasting for everyone and dedicated the fountain to Tyler's Hope. If you go to MT Chophouse you will see a large granite plaque with the Tyler's Hope logo on it and saying this fountain is was dedicated to Tyler's Hope on May 31st, 2007. I will put a picture on the website when I can find my camera. As always, our friends and neighbors came out of the woodwork to support the cause but we also had many new people there. We were able to explain dystonia to people who were not sure what it is and we have many new friends that are going to be great supporters of the foundation and what we are building. Last night raised a lot of money and created excellent awareness!

      I cannot thank those people that came last night enough.