Progessional Diary of Tyler Staab

February 1st, 2012

Wed, 01 Feb 2012 05:00:00 GMT

Report cards came out and Tyler, Luke, and Samantha have straight As in school.

Tyler is recovering well from his surgery and appears to be infection free. Tomorrow he has the regional science fair at Santa Fe College. He is in the botany division. His dystonia is still bad with his left arm continuously pulling up into the air. The docs are trying hard to find a setting that can help this but have not found it yet. He is applying to different high schools next year and waiting for his acceptance letters.

Samantha is applying to middle schools and waiting for her letters. She now has a new ambition of playing middle school volleyball. Anyone else I would have thought this would be impossible but with Samantha I believe she can do it. She has started to train with Merideth again and is excited about having the new goal. Her feet still trun some and her core isnt as strong as before but we are hoping to find her optimal programming also.

Luke is doing well in basketball and loves a new electric scooter that was given to him. He is not showing any symptoms of dystonia. He likes mathematics. He does not eat well but that could be a combination of teeth he just got fixed and no appetite. He is skinny and very very active. He is a sweet boy that has a great sense of humor.

Saint Michelle cut her hair and is learning lots of new things as she helps each of the kids with their homework each day. We have had the opportunity to go on several dates to differnet fund raisers with our friends while Tyler stayed home with Samantha and Luke. All of us went to a cabin in North Carolina for a few days of relaxation.

January 7th, 2012

Sat, 07 Jan 2012 05:00:00 GMT

Our household is very interesting right now. The kids continue to do well in school but we are attempting to get better results from Tyler and Samantha’s DBS surgeries by modifying their programming.

Tyler's left arm continues to be a problem and he has some facial dystonia with some pulling and some in his eyes. The very good sign is that Tyler seems to be putting on some weight. Through a combination of increased shakes and increased appetite which allows him to eat more during the daytime, he has had some weight gains. Unfortunately two days ago Tyler started having some cognitive issues at school with some loss of memory. When he came home we noticed that he had something that looked like an infection on top of his head and it was very sensitive. Michelle took Tyler into the hospital where the docs met them and agreed to get a CT scan done right away. The CT look good because there was no evidence of infection in the brain but there is an infection near the cap that holds the electrode onto the skull. This infection was eating away at the skin between the scalp and the skull. It was also inflamed and painful. Tyler came home with a supply of antibiotics and anti-inflammatory meds. He will go have surgery this Friday to clean up the skin and the cap area and hopefully get the infection under control. The cognitive issues we believe may have been caused by a different issue and possibly having three leads turned on at once with some overflow that causes different strange emotions and memory issues. The idea is to turn off the lead we just turned on and see if it eliminates the problem.

Samantha also had a rough week. She has been falling more as we chase her progression with programming of the dbs. She fell and banged her head pretty good on the marble counter top this week.

Our dog decided to shake the cartilage from his ears this week as well. He had to have surgery and it happened to be on the day that Tyler was taken to the hospital. Of course this was also traumatic for the kids who were crying and we needed to pick the dog up from the vet and keep a close eye on him. It was a really good financial week with thousands out of pocket for medical and veterinary expenses. We are still paying for the last dbs surgery. We are fortunate enough to make a good living but it is tough for us so I cannot image what other families do with children suffering from dystonia.

Lastly but not least, Luke started basketball. He played really well scoring five times in the first half. He came home and drew different lines on our court to practice for next week.

December 12th, 2011

Mon, 12 Dec 2011 05:00:00 GMT

We had an inspiring weekend. I have spent much of the day following up on Tyler's Hope things to make the moeny work for us and find this cure.

We spent most of the weekend planning for the Season of Hope Run and competing in it. It was one of the most fun events I have participated in. The atmosphere was electric with people in great moods. We started the race with a moment of silence for a good friend (Harold Monk) that suddenly passed away at a young age. There were over 340 runners including participants that had dystonia, parkinson's disease and other movement disorders. It was a great showing of support and inspiration. Three of the runners had DBS surgery and completed the 5k. One of those people was our 10 year old Samantha. Sammy had a goal to complete the 5k but as she pushed through her physical therapy she made he new goal to beat 1 hour and 20 minutes. Sammy finished the race in 1:09. Her determination was inspiring. Her brothers were very supportive and both ran to greet while so they could cheer her across the finish line. Tyler took pictures and encourgaed everyone. Luke ran the 5k then came back to walk with his sister.

Michelle text me earlier to tell me that al of the teachers at Samantha's school are wearing their Team Samantha shirts today.

Yesterday Luke's right foot looked like it was truning in when he walked and he would skip a lot. I am concerned that he is showing something after the fatigue of the race but he said he was doing it on purpose. Keep him in your prayers please.

Thank you race director Leslie Okun.

December 2nd 2011

Fri, 02 Dec 2011 05:00:00 GMT

Yesterday was a great day in our household. Luke turned 7 years old and had a wonderful birthday. The secret Pal struck again and continues to have an impact on my children's lives that will never be fully appreciated by everyone. Thank You secret pal.

Seven years old is a milestone in our house because of Samantha and Tyler both showing symptoms when they turned 7. I did not sleep much at all this week and I am sure it was because I am worried about Luke. Saint Michelle has been stressed also and we both pretend like that can’t be it. Luke was able to build a Lego boat all by himself yesterday which made me think his dexterity is good. Luke got basketball clothes for his birthday and starts basketball in a week or so.

Tyler started the day at clinic and was very excited to find out he gained another four lbs since he was last weighed. He also scored the highest score in school on his Spanish test (122) that he was worried about.

Samantha spent some time preparing in PT for the Season of Hope race on December 10^th and had a really good work out.

I received two calls this week from people that I know that had someone in their family diagnosed with either Dystonia or Parkinson’s disease and wanted to be seen at the University of Florida’s Movement Disorder Center, home of the Tyler’s Hope Center of Excellence. Although it is unfortunate that these things happen, I was happy that we could help them.

November 22nd, 2011

Tue, 22 Nov 2011 05:00:00 GMT

Two days before Thanksgiving and there is a lot to be thankful for. For me, family is the top thing followed closely by great friends. I miss my father and my mother but I feel very strong because of the love and strength they gave me while I was growing up. You already know about Saint Michelle and my fantastic kids. My friends I cannot be more grateful for with their compassion for Tyler's Hope and how they make our lives fun.

Now for the update on the kids so that people with dystonia can understand the fluctuation of emotions and daily battles that are fought.

Tyler continues to do very well with his studies and last week he earned 1^st place again in the science fair in the botany division with over 350 kids competing and 90 in botany. Tyler will go to the regionals to compete. He will be fitted for a brace/splint for his left wrist and arm soon. He is trying everything he can to get some improvements on his left side. He has had a lot of pulling on his left eye and face lately and it is frustrating and painful at times. He is going to try some different programming settings including turning off and on a lead. Dystonia Sucks!

Samantha continues to impress and work very hard in physical therapy in preparation for her 5k Season of Hope run. Michelle is having some t shirts made up for those of us who are going to run in honor of Samantha at the race. She is going to take a break from her PT after the race is over.

Luke has his 7^th birthday December 1^st. This has been a date we have been watching very closely because we noticed symptoms with both Tyler and Sam when they turned 7. Samantha showed on her birthday. Right now Luke is doing good and showing no signs of dystonia. He starts basketball on December 5^th. Luke has learned how to text so we spend most of our weekends and nights responding to his texts.

Happy Thanksgiving.

November 4th, 2011

Fri, 04 Nov 2011 05:00:00 GMT

Tyler's birthday was two days ago. It is a reminder of the urgency needed in raising money to fund the research. One tear older is one year more that we could have cured him and others. Last night he had five boys sleep over for a party. I am typing this at 5:30 am and they are still not in bed. It sounds as if they have a demolition ball upstairs. Tyler's dystonia has shown up in the left side of his face some. I believe it is the newer programmings but his eye involuntarily closes and he grimaces from time to time. We will try and coorect this.

Samantha had a few days there where her foot was turning in more causing her to fall when she has been trying to walk a lot more. She had a good time and got lots of candy on Halloween.

Luke has started praticing his basketball again. He was a ninja, captain america, and a cowboy this week for Halloween. He broke it down on the dance floor for everyone to see at the Halloween party. Luke loves to dance. Luke turns seven years old on December 1st. This day is important because both Tyler and Samantha showed symptoms when they were seven. Samantha showed the first real signs on her seventh birthday. We are watching very closely at all of his movements but he is showing no symptoms right now.

The secret pal struck again this week. The Pal does not miss a beat. First the Pal showed up for Halloween then again on Tyler's birthday. I know the Pal reads the diary so Thank you Thank you Thank you.

October 18th, 2011 -The Wedding

Tue, 18 Oct 2011 05:00:00 GMT

We were able to take all three kids with us this past weekend to Boston and Newport RI.

As a reminder for those who do not have handicapped children or are newly diagnosed, airports and airplanes are not the easiest things to navigate with Dystonia. As always Saint Michelle called ahead and got some wheelchairs reserved for the airports and that helps. You cannot use the escalators or stairs with wheelchairs. Our layover in Atlanta was 35 minutes and we had to travel between terminals so waiting on the elevators is frustrating. We did make our connecting flight though. Both Tyler and Samantha have adjusted to the posturing that dystonia makes them take so they were able to comfortably fly to our destination. The last trip we were on, sitting still in the seats was an issue because of all of the dystonic movements. Because of the extra luggage, and walker (we left one of the wheelchairs at home) we needed to rent an SUV to carry everyone around. Samantha started with a head cold and came home with what is now bronchitis.

We arrived in Boston Friday night and went to our hotel in Cambridge where we caught up with my older sister and the kid’s cousin, Nick. We had dinner together then went to sleep. The next day, Saint Michelle and Samantha drove over to Newport with my sister Barb while Tyler, Luke, Nick and I took the famous Duck tour with my cousin Dave and Lisa who had flown in from Minneapolis. The Duck tour is awesome and I highly recommend it. We ran out of time in Boston so we were not able to see Harvard Square or Fenway Park. We will be back. Tyler did get to see Mass General (where they found the DYT1 gene for Dystonia and where we have funded a lot of research for the cure) as well as M.I.T. That area is full of the brightest minds on the planet.

We left for Newport after the duck tour ended. For the sake of typing all of the details and making the story too long to read, I will say that the Oceancliff Resort is beautiful. The wedding was unbelievable. A lot of my family was able to make it including cousins and aunt and uncle. The kids were each in the wedding and looked great in their tuxes and Sammy in her dress.

Jordan and Ashley are two of the greatest people you could ever meet and I was very excited about their wedding day. They have been instrumental in our battle against dystonia and raising funds/awareness for the cause. This weekend was no exception. First they asked everyone at the dinner tables to take a dollar out and one person to take a larger dollar out. The person at the table with the largest dollar was the banker and kept all of the money from the table. They then played music and passed the bills around until the music stopped and that person was asked to take all of the money from the table over to Tyler as a donation to Tyler's Hope. If that wasn't enough, they purchased 200 t shirts with Tyler's Hope and Dystonia Sucks! on them and gave the to all of the guests. All of the guests put the t shirts on and wore them while dancing and celebrating. I promise you that as I type this I am teary eyed and proud of them thinking about this cause on a day when we were celebrating their marriage. Good people!

October 4th, 2011

Tue, 04 Oct 2011 05:00:00 GMT

Tyler's Hope is proud to be a part of the 2011 Gators Give Program.

Pleadge on line and learn more about the 2011 UFCC Campaign at www.ufcc.ufl.edu

The UFCC is the only official charitable giving drive for UF employees. Contributing to the UFCC is voluntary and can be done through cash, check, direct bill, or payroll deduction.

Both Tyler and Samantha were selected for international travel thorugh there schools. Tyler was also selected this week for a leadership program that would focus on Medicine and Science, Politics, and leadership. These programs are held over the summer at Harvard, Columbia, Georgetown, UCLA and Stanford.

Samantha has plans to walk the 5k with her brother Tyler in the Season of Hope race on December 10th, 2011. Samantha successfully completed the Heart walk 5k last weekend and we are all very proud of her accomplishment and will power.

September 21st, 2011

Wed, 21 Sep 2011 05:00:00 GMT

A quick update and a good story.

Tyler's left foot is looser and is causing him to fall when he walks. The docs say it is a good sign to have that foot loosen up but Tyler has to work on building the muscles. He fell down the steps coming down the stairs this morning.

Samantha's foot has truned a little so she will need to try and tweak her settings so that it straightens out some more again. Her and Tyler go to therapy every week with Tyler going to both phyiscal and occupational therapy.

Luke is reading much better now and is adding using three digit numbers. Samantha works him hard asking math questions all of the time.

The good story: I am going to copy it at my office.

Gray/Robinson Attorneys at Law in Orlando sent a letter describing a unique way to raise money for Tyler's Hope.

Our firm supports"Casual Day for a Cause" on each payday friday. Each employee who wishes to participate contributes a minimum of $5 for the opportunity to dress professionally casual. The firm then contributes the money it raised to a local charity. Tyler's Hope was brought to our committee by Adam Pastis, a GrayRobinson shareholder. Tyler's Hope was chosen by our Casual Day Committee as our "Casual Day for a Cause". We are very proud to support your fine work to find a cure for Dystonia.

THANK YOU GRAYROBINSON.

September 8th, 2011

Thu, 08 Sep 2011 05:00:00 GMT

It has been a hectic week but a very good one by our standards. The kids have been working hard in school. Tyler has all perfect grades and is concerning me over our bet about Harvard. Samantha is doing equally as well in school and Luke tested out as gifted. I must clarify that gifted means at his age that he is creative with his ability to learn not his knowledge. I would never say that boy is not creative so I can understand why he tested very high.

Tyler just called me on the phone with fantastic news. After more than three years of no wieght gain he has put on three ibs since his last visit. This is huge. I couldn't be happier because this has been my largest worry with him. I hope it continues but right now it is a huge step in the right direction. Tyler's face has more dystonia because of his new DBS settings. He is able to pronounce things better than he could before but there are other symptoms presenting on the left side of his face.

Samantha called me yesterday and explained that she walked all the way from her doctors office down the stairs and to the car without falling once. again, this is HUGE!. She works very hard at building her muscles and concentrating on walking. She used a walker to help stabilize her. She was feeling under the weather this week so it created dystonia storms earlier in the week. She had a hard time not shaking and moving around but she seems to have gotten better now that she feels better.

Luke took liquor bottles and jello cups and made some kind of science experiment with his friend this week. I am sure our neighbors think we are not teaching his correctly and maybe we are not. He is crazy but innocent and loving.