Progessional Diary of Tyler Staab

June 29th, 2009

Mon, 29 Jun 2009 05:00:00 GMT

It was a good weekend with the family. We had the 2nd annual Tyler's Hope Poker Run on Saturday and 70 motorcycles showed up. The kids all had a blst sitting on some of the motorcycles, listening to the band, and playing in the field. I particularly liked watching Luke eat ribs. The Mustangs baseball coaches(Tyler's team) contributed the food and cooked it for us.

Samnatha has been compalining of pain in her back. This really scares me because of all the symptoms that I see dystonia cause, the back issues are horrible. Sam's back pulls so much at times that it jolts her out of her seat. It is not very frequent right now but we are watching it closely.

Tyler and Samantha had botox injections last week and they seem to help a little now. Tyler has had the dystonia progress a little into his neck. He got some botox injected into his shoulder as well as his wrist last week. Sammy had injections in both of her lower legs. Sammy received 300 units of botox this timeand did not complain about the injections.

Tyler goes in to get programmed today at 2pm. Luke is still taking swim lessons. Sammy is getting very good at multipilcation tables. Michelle had to get glasses to read. Gator and Tebow (our labs) are terrorizing everyone right now.

June 23rd, 2009 Moving forward

Tue, 23 Jun 2009 05:00:00 GMT

Michelle and I are on a nutrition/work out program and I recommend this for anyone dealing with stress in their lives. It not only forces you to become healthier physically but also mentally.

We have had a close friend diagnosed with a brain tumor and it came out of nowhere. We are very optimistic that it will be taken care of by the same excellent doctors that we have grown to know and trust in. Our minds have been on speedy recovery from this scary bump in the road. I am writing this to remind people that anything can pop up when you least expect it and we should be grateful for good friends and family. Sunday was difficult because I wanted to call my Dad and talk about things and let him know that I loved him. People would say happy father's day and it would make me a little sad until my cousin sent me an email reminding me that he was celebrating father's day with his father.

Tyler and Samantha are staying busy this summer doing a lot of swimming with their brother Luke. Samantha gets her puppy tomorrow and she is very excited. Her foot is very tight and turned inward but she goes soon for botox and is willing to get more this time.

Tyler gets programmed soon and needs it. He has been uncomfortable and looking much more twisted. I am hoping he is not progressing again. He was doing well a few weeks ago so maybe we can get his settings better. He has started a book club that he will receive some credit for in school.

Thank you for your continued support. We are moving forward with the Dr. Edward V. Staab grant and funding of other research projects for this year. This weekend is the Tyler's Hope Poker Run and the golf tournament is coming up fast.

June 17th, 2009

Wed, 17 Jun 2009 05:00:00 GMT

The CNN story is still getting us exposure and we have received many encouraging emails and calls.

Carrie's marathon site is bringing in some good donations and our Poker Run is coming up in a little over a week. We will have police escorts and safety riders. Non-riders may have the option of riding on a bus this year.

Tyler has been very twisted lately. I have noticed it more and I am hoping that it may just be because I didn't see him for a week when he went to Washington DC but it could be that he is still progressing. That scares me. He is due for a DBS programming so maybe it can help. He is reading some classic books this summer to get some credit for school next year.

Samantha (Sammy) is doing well and loves to swim. She always wants to go to the pool. It is not easy for her to swim but I don't think she cares. We create little competitions across the pool and use the dive sticks. She cannot go to far away from the three foot section because her legs won’t let her swim like most and she is afraid of having trouble.

Luke constantly hugs the dog (Gator) and crowds him. Gator just puts up with it. Luke also loves to swim and is good at it. He has swim practice each day and is learning a good stroke while learning to breathe correctly. Once he is done I may ask him to show me how to do it.

My wife/best friend is still a saint and does everything for everyone without complaints.

June 12th, 2009 The day after the CNN report

Fri, 12 Jun 2009 05:00:00 GMT

Yesterday was unbelievable. I never would have guessed how much exposure and support would be generated from the article with CNN. I am not sure what time the video went on CNN.com Thursday morning but it was the lead report on the front page and I received many calls and emails before I knew it was up. We started to get the word out in the midmorning so many people were not able to see it until even today. Last night it was the third most emailed video on CNN and today we are #1. Dystonia was the fifth most searched word on the Google search yesterday.

The hits kept coming and it seems even more people watched it last night. My servers could not handle the traffic and our site quickly shut down. We were able to get a temporary page that many people used to donate. Thank you to everyone that has donated. We promise to use the donations wisely for a cure. I am extremely energized and think that we will do even bigger things now that we have national awareness. Several other opportunities have arisen for interviews and national exposure for Tyler’s Hope and more importantly, Dystonia. The word dystonia was the fifth most searched word on the Google search yesterday at one point.

Samantha, Luke and I went over to the Tyler’s Hope Center for total dystonia care this afternoon and met with our friend Mike that came up from Tampa to be seen in the clinic. Mike was able to meet Jen, the Tyler’s Hope center coordinator. It was great to get the kids together with someone that really understands his dystonia and can talk with them. I will be spending this weekend trying to answer emails and calls that have been coming in. The website will need some work and I plan on doing that as well. Look for updates to the Products section and a section that will provide a link for the DIPR Registry. Feel free to email me your contact information if you would like more information on the registry.

Luke and Samantha miss their big brother and can’t wait for him to get home tonight. Tyler hurt his arm in Washington DC and had to get it x-rayed. It was not broken. He hurt it trying to unload his wheelchair from the bus.

June 10th, 2009 Week without MOM

Wed, 10 Jun 2009 05:00:00 GMT

This week Michelle and Tyler went on their trip to Washington DC with Tyler's class for the annual safety patrol trip. I am not sure who was more excited about the trip, Michelle or Tyler. Tyler was able to take his electric wheelchair on the bus. Michelle said they walked many miles the first day so it is very good that the school was able to work out a handicap accessible bus. The bus driver has been very good to Tyler. Having his chair is essential for him to be able to keep up but it would have been worse with his dystonia acting up due to fatigue. The fatigue comes from lack of sleep. They did not sleep much on the 16 hours bus trip and I don't think Michelle is getting too much sleep now.

I have been enjoying spending time with Samantha and Luke by myself. We have been swimming a lot and last night we went to Yamatos for dinner. We saw Tim Tebow there last night. For those of you who do not follow football, Tebow is most likely going to be considered historically as the best college player ever but the thing that is most inspiring is how he motivates others by being such a good/caring person. Tebow is a real role model. Samantha is not a small girl so it is much more difficult for me to pick her up than it is to pick up Tyler. Her left foot is very turned in right now but she is due for more botox in a couple of weeks. We play games while swimming but it is getting more obvious the difficulties she has with her legs and arms when she tries to swim. She loves to swim but you can see how hard it is to propel yourself without the ability to control your leg movements and even raise your arms over your head to swim. She has been killing me in games like UNO.

On Friday we will be meeting another friend and dystonia sufferer when he comes to town for his appointment. We look forward to seeing everyone when they come to The University of Florida for care. We have met many new friends and we help each other out in many ways. We hope to get together with our friends in Chicago, New York, Boston, California, and all over when they come to town. We appreciate the support. The kids are even better to see their friendships grow and their support of each other. Our house is open to anyone that comes to UF so take advantage of it.

June 5th, 2009 Last day of school

Fri, 05 Jun 2009 05:00:00 GMT

Today is the last day of school for both Samantha and Tyler. We are very proud of them both for doing so well. We know of so many dystonia sufferers that are unable to continue to go to public school or struggle because of medications and symptoms. Sam and Tyler are definitely fighters and excel regardless of their dystonia. Sam and Tyler both received principal awards, which means they had good attendance and good grades throughout the year and bug awards which means they brought up a grade without dropping any. Tyler received the President's award for maintaining a 3.8 or higher all year and earlier this year he was awarded the citizen of the month award.

Today their school gave out the Tyler Staab Award again to the student that is chosen to have excelled academically, never gives up no matter what challenges they are faced with, is kind to others, shows integrity, etc… This award is given each year by Mr. Hall who comes up from south Florida to present the award to the student and parents of the winner. This year's winner is Yuanqi "Reggie" Cai who received every award possible including perfect attendance. Yuanqi Cai received a trophy, his name on a plaque at the school as the third recipient of the award, and $750 was donated to Tyler's Hope for a Dystonia Cure in his honor.

Luke finished school without incident and he is allowed back next year. I am just kidding about Luke. Luke seems to pick up everything very quickly. His athletic skills really impress me because I do not spnd much time with him teaching him sports because I am scared what it will do if he gets the symptoms as well.

June 1st, 2009

Mon, 01 Jun 2009 05:00:00 GMT

The first day of the hurricane season.

I started writing this blog when Tyler was diagnosed so that people could understand what dystonia is like as he progressed. I found out that the blog acts in many ways that I did not anticipate. Doctors from overseas have emailed asking about updates because of their curiosity with the progression of the symptoms as well as the treatments. Patients and families have emailed me saying they read it to see what to anticipate with their symptoms or loved ones. I try to give some insight into what we as a family deal with while dealing with generalized dystonia. I rarely if ever talk about too many things outside of what is directly affected by the dystonia. There are many struggles and great things that happen to us as a family that I could not put into a blog. Everyone has their own struggles but by airing out some of my families dealings with dystonia I have seen where it has an impact on individuals that may normally have taken things for granted or need a subtle reminder that things are not always as bad as they seem.

This last weekend has reminded me of the great things and the difficult things that we become accustomed to. For instance, we are used to Tyler being fed by a feeding pump and struggling with food and weight gain. We forget that he is a kid and doesn't want to have a tube sticking out of his belly or be fed hooked up to a pump each night. Tyler does not complain so we go about things as routine. Dystonia is horrible and we will win this battle but we need to hurry up.

Samantha had a great time at the fund raiser in Raleigh with her mother. There were parents and kids involved and they vowed to do more fundraisers and awareness projects. Samantha's cousin Christy, sang Sammy a song ("hero") and Michelle cried.

Luke swam a lot this weekend and wanted to show his brother and sister how well he was swimming. Luke and Tyler wrestle a lot.

May 29th, 2009

Fri, 29 May 2009 05:00:00 GMT

This weekend is the Garden Party fund raiser in Raleigh held in honor of Samantha. Samantha was excited because she and Michelle were able to fly up for the event. It will be a great girl’s get-a-way.

Michelle and Samantha were concerned with how they were going to get around in North Carolina since Samantha needs a wheelchair most of the time now. They called the airlines and were told they could ship the chair through or even leave it planeside as they took their seats. Things never go as smoothly as people say they will. Their flight took them through Atlanta with a two hour layover. They sent pictures of the two of them making faces and playing around so I was happy they were having fun. They asked the check in desk if they could preboard and go to their seat first so that Samantha would not have as much difficulty going down the aisles as one of the last on the plane. They were told that would be fine but when they tried to board the plane they were told they had to wait for their zone to be called. Sometimes God works in mysterious ways as is evident simply by the presence of this blog and what it stands for but in this case, I think it was a good thing that I was not there to cause problems. It is embarrassing enough to deal with some of the symptoms of dystonia and the stares but it is crazy to me when people don’t allow simply things that would make life easier. I am rambling and I want to stay focused on what occurred because although it is comical, it is very frustrating and a lot of people that don't deal with handicapped kids see what occurs. They finally got situated on their flight and arrived in Raleigh shortly after that. Once they touched down and went to get off of the plane they were let know that the wheelchair was left in Atlanta. As I have said before, my wife is a saint and has much more patience then myself so they just gave them the address to where they are staying and were told that the chair would be delivered sometime tonight. It gets a little better. They gather their bags and make their way to the exit but the elevator was broken and they needed to meet their ride downstairs. They finally made it, settled in, and are having a great time.

I am at home with my two boys for the weekend by ourselves. I came home a little early from work today and we all went to see the movie UP then came home for dinner. If I do not update the diary blog, it is probably because Luke and Tyler have me tied up and I will need to wait for Michelle to get home to be untied.

I just put Tyler in the downstairs room for the night and hooked up the feeding pump for him. He was having a difficult time talking and I could hear his teeth grind as he labored through eating a sandwich for dinner. I tried to make him a three egg omelet with cheese and ham but I snuck in some fish oil and he caught me. He did not like the orange "funky" taste of the fish oil so he did not eat the omelet. Oh well, I tried.

May 19th, 2009

Tue, 19 May 2009 08:00:00 GMT

Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with? I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.

I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps that we do not have to. It will eat you up thinking about how dystonia affects people and you cannot help. I will do anything for my kids to make them feel better and have the same advantages as others but now I also want to do that for others. My understanding of what dystonia is and how it is seen makes me want to cure everyone today.

Tyler is doing pretty well but his grade in social studies dropped off a little and he needs to get it up before the end of the year. I believe it is because he is sitting near his buddy in school and hasn't been paying enough attention. We will see. Ty's dystonia is managed right now with his left wrist more flexible and his walking is still better. I will need to keep his legs stretched because he hardly puts any weight on his left leg. He tends to keep that leg in the air and bent.

Although we look for symptoms in Luke every day, I do not see any right now.

May 18th, 2009

Mon, 18 May 2009 08:00:00 GMT

The in-laws from Miami came into town to see Samantha's first communion. My father-in-law is Jewish so it was big to get him to the church for Samantha. We caught him trying to take the money out of the collection basket until we told him to put money into it. They are good people and always support the kids and us very much.

Samantha did great at her first communion. She looked beautiful in her dress. Samantha has had difficulties walking as she has progessed so she was in a wheelchair throughout the first communion. A friend of hers, Grace, helped push her chair and it was really nice. Samantha's aunt Barb drove down from Atlanta to support her as well. Samantha's godfather spent all day with her and was wonderful to the kids as always. Between getting her godfather back into church and getting my father-in-law into a church, I was looking around for some crazy excitement to start up. If you know either one of these guys you would understand.

I spent about 35 minutes last night stretching Samantha's foot which is getting tighter. It just so happens that the angle I have to turn her foot to stretch it tickles her often because I have to grab the bottom of her foot.

Tyler's left leg pulls up and he does not put any pressure on it. We have started to sit on his legs and straighten them so that his hamstrings get stretched out. He does not like it but it is good for his legs to keep some flexibility.

Luke is still Luke and does not slow down. He was very sweet to his big sis this weekend. Please don't let Luke catch anyone messing with his sister.

I recieved an encouraging email form Jeb Bush on Saturday and I feel very positive about spending money and finding a cure in the near future.