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Progressional Diary

July 29th 2010 Encouraging email

by Anonymous on Wednesday, July 28, 2010 10:00 PM
Please note the new pictures under the event pictures. We will be updating these for each of the events.The following is a letter I received today that I thought I should share. Dear Mr. Staab, You don't know me, but I have spent a good portion of this evening reading the updates on your precious family through the "Tyler's Hope" website and trying to find a way to contact you all and let you know what a huge inspiration you are to so many of us. My family decided to eat at Outback Steakhouse last night here in Gainesville, and upon entering, we were directed to a table in the back. As I walked toward the back of the restaurant with my son, I met eyes with a gorgeous girl who took one look at us and immediately smiled. So many times at first glance, we are not met with smiles...but with awkward furrows and looks of sadness. But this girl, she smiled as soon as she saw us...it was a smile of understanding. A smile of "I know what you are going through. I then noticed that she was in a wheelchair and realized that...

July 28th, 2010 Mohawks

by Anonymous on Tuesday, July 27, 2010 10:00 PM
We all got to spend some time this past week with a couple of families that drove down to Florida for the week from New York to have their children receive Deep Brain Stimulation surgery from DR. Kelly Foote and Dr. Michael Okun. These kids have had multiple surgeries and are hoping that the doctors here at UF/Shands are able to help them. Tyler, Samantha, and Luke played with them and their syblings while the night before surgery started and then we all went to be with them as they waited for the surgeries to be over. It waas another great family that we feel close to now and has dealt with tramendous difficulties. I hope and pray that their children get relief and I am determinde to motivate the researchers to find a cure. Tyler and Luke decided they were getting Mohawks this week. They did get them and I did not recognize them when I got home. I am praying their hair will grow out before the golf tournament in a few weeks. (The Tyler's Hope Golf Tournament is sold out again and the waiting list is growing)....

July 16th, 2010

by Anonymous on Thursday, July 15, 2010 10:00 PM
The 5th annual Tyler's Hope golf tournament is coming up soon and we are sold out again. I am starting to get excited as I talk with people that are also excited about this year’s event and how to make it special. A number of corporate sponsors have stepped up and we will raise a lot of money to fund research at a critical time. The kids:Tyler has been very busy after returning from Cooperstown NY with his baseball team. He started computer camp this week and ends today with a visit to Disney to check out their animation. It is definitely ok to think of yourself as a jock and a geek. Tyler had some pulling in the left side of his face last week. Although it was a new symptom and scary, I believe it was induced by the fatigue from Cooperstown. He seems to be doing much better. We are trying to give him extra shakes and nutrition since he was not able to take shakes in Cooperstown.Samantha has been having pain and difficulty. She often has trouble getting to sleep at night which makes her symptoms worse. It becomes...

June 29th, 2010

by Anonymous on Monday, June 28, 2010 10:00 PM
The secret pal struck again this morning. The Pal left three books for the kids and a note encouraging them to read during the summer.

I have been traveling a lot lately while Saint Michelle provided family duties so I notice subtle differences in symptoms with the kids more. Tyler has been practicing baseball and very excited about the Cooperstown trip we are taking next week. Yes, Michelle, Tyler and Myself will be out of town but if you plan to rob my house at that time I would not advice it. "Guido" will be staying at the house with the kids and there is always our two trained dogs to contend with. Tyler has made some real strides in his ability to be involved and play baseball. Last week at practice his coach was hitting fly balls to him in left field and Tyler was catching them. Several people called and said how cool they thought that experience was and how other kids have grown from this experience. Kyle McGriff and other friends of Tyler’s were giving him high fives and encouragement. Cooperstown...

June 5th. 2010

by Anonymous on Friday, June 04, 2010 10:00 PM

I have been spending some time with my Mother who is suffering from Alzheimers. Every day I want to spend more time with my kids and family. My friends and family are so much more important to me since we have started our battle against dystonia. They have been very important and inspiring to us.

Tyler went with a group of friends to the movies. He said he won a special girl some stuffed animals but she beat him in a race game.

Samantha won the Tyler Staab award for 3rd graders. She was completely suprised and very happy. She has shown excellent character and gets straight As. WE are very proud of her.

Luke found some Batman boxers and thinks he is the Big Dog around the house now. He had his last day of school on Friday and is ready for summer.

June 2nd, 2010

by Anonymous on Tuesday, June 01, 2010 10:00 PM
We are nearing the end of the school year for the kids. Luke, aka Spiderman gets out this Friday. All three kids seem to being doing very well again and scored very well on their recent FCATs.

Samantha keeps telling me about the annual Tyler Staab award that her school will be giving out this Friday because she is a finalist. Both Samantha and Tyler lose their aides for next year. Tyler's Aid is moving and Samantha's Aid is becoming a teacher. This is scary going into a new year without knowing the Aid. Tyler's Aid is out on vacation the next two weeks so he doesn't have anyone to assist him while preparing for his finals next week.

Tyler went tubing with a couple friends last weekend and had a blast but he worked really hard to stay on the tube because he can only grip with one hand. Any person would have been completely worn out from a day of tubing but he was having so much fun he kept wanting to do more. I find it hard to tell him to stop even though he probably should because he is eating up...

May 25th, 2010 - Progress

by Anonymous on Monday, May 24, 2010 10:00 PM
I was very encouraged after an excellent Tyler's Hope Summit. The discussions were lively and I have heard from several researchers that they got energized from the meeting and went back with new ideas and enthusiasm about finding treatments and eventually a cure.

Tyler has been doing well this week after a difficult week with his dystonia last week. He went for a programming last Thursday and found that he was turned up to high causing some of the symptoms to be worse. When he was turned off his left arm relaxed some so they turned his programming down and it seems to have improved some. Tyler's left arm constantly pulls upwards now and stays above his head. Tyler is doing well in school again and won the student of the week award. He has his Junior National honor society party coming up and is excited about that. I wish I was the smart growing up. Tyler continues to struggle every day with his weight.

Samantha is also doing well and has made it very obvious o us that she wants to win the Tyler Staab award at school. Michelle said it is probably down to two people and Samantha is one of them. The teacher that started this award is coming up from south florida to give it again this year. Samantha seems to be starting to get some benefits from the DBS surgery. She is definitely more mobile now although not out of her wheelchair or walking yet. It would be hard for the general public to tell how she has benefited yet but it is easy for us to tell in her daily activity.

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May 10th, 2010

by Anonymous on Sunday, May 09, 2010 10:00 PM
Today is a big day at Brentwood school (Luke's school) for Tyler's Hope. The kids will all be doing activities that will help them understand living with dystonia and other handicaps. They will do some things like wearing boxing gloves to draw a picture, take wheelchairs through obstacle courses, and do a balance beam with oversized shoes. Luke is really excited because he feels like good about doing something for Tyler's Hope. Samantha gave him $5 she had for the event.

The Principals awards are going to be given in June. The Tyler Staab Award at Williams is going to be given out again. Samantha has worked really hard to try and win it. It is difficult to give it to Samantha because everyone will think she won it because of her brother. There are some really good kids in the running for the award. They all have great grades and shown enthusiasm and compassion.

In the baseball tournament this weekend, Tyler won two Sportsmanship awards(medals). One of the opposing team coaches wrote a nice letter...

May 6th, 2010- Kids involved in event

by Anonymous on Wednesday, May 05, 2010 10:00 PM
I met with a small group of people that represent different foundations in Gainesville Florida this morning for breakfast. The foundations (Tyler's Hope being one of them) have formed a coalition to work with the University of Florida and Shands Hospital to promote and enhance the health care services for children in our community. Our first venture as a group was to work with Tim Goldfarb and others to get a dedicated area of the new ER for Children. This was very successful and we are now talking with them about creating a dedicated ER for just children at Shands. It amazes me to see how well this community sticks together and how involved people are in making our community better. I have never seen a community that does a better job at supporting and enhancing themselves. Tyler's Hope continues to benefit from the way this community has rallied behind our foundation to support our efforts to find a cure. Unfortunately my meeting with the coalition and with the University of Florida foundation later in the morning...

Monday April 26th 2010

by Anonymous on Sunday, April 25, 2010 10:00 PM
Tyler had his battery replaced on Friday. The surgery did not take long although the day was long between getting him in and letting him go home. The surgery went well but Tyler has some pain in the healing process from them cutting into his muscles and chest. The battery that was relplaced is the one that controls his good side of the body(right) and was in his left pectoral. Tyler's bad arm is on that side and has been pulling upwards lately which puts more stress on the incision area. He continues to be a real trooper though and went back to school today.

Samantha has not seen a lot of benefit from the surgery yet but seems to have a little more stability and is able to sit up and pull herself up more now. She looks very cute with short hair because I can see her face now but he hair continues to grow out.

Every day I worry about Luke and watch to see if his arm shakes when shooting a basketball or if he is abnormally clumsy but I can't tell anything for sure yet. He is very energetic and has now graduated into kindergarten for next school year.

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