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Progressional Diary

March 29th, 2011

by Anonymous on Monday, March 28, 2011 10:00 PM
Tyler evidently is a champion of sorts on the video game Modern Warfare II. A local guy(friend) is our IT director for my company and is a big technology geek as well as Tyler. He(we will call him Pete)was ramabling and raving for a while about how impressive it is for Tyler to be as good as he is at the game when he is only able to use one hand because of his dystonia. Tyler was able to get a "nuke" in the game.

Tyler's Dystonia has been acting up and now the doctors are doubting that it may be his battery so they are scheduling him for a new CT scan to see what is going on. This Thursday he and Samantha will be going in for their annual neuro psych evaluation.

Tyler, Pete, and I spoke about having Tyler do all of the updates to the website from now on. We will work on making that happen.

Samantha got her blood drawn yesterday to test for her calcium levelings to see if she needs to suppliment her diet with certain vitamins and minerals. Since she is not walking and putting pressure on her...

March 7th, 2011

by Anonymous on Sunday, March 06, 2011 9:00 PM

Tyler has been keeping busy on his baseball team and recently went to the Harlem Gloabtrotters(sp?). He has babysat for Luke and Samantha on a few occassions in order to make some money and give Michelle and I some time together.

Samantha was "wildcat of the week" at her school last week. Her dystonia still makes her very uncomfortable and now we are looking at an additional surgery. We went ahead and blocked out the time for June in case she decides to do the surgery.

Luke is feeling a little under the weather but he seems to bounce back quickly. Luke is very active playing basketball in the driveway and starts soccer soon. He and his buddy Colin have been practicing soccer. Luke learned how to ride his bycycle this weekend without his training wheels. Now he needs to learn stopping and starting on the bike.

Press Conference for new Research laboratory

by Anonymous on Sunday, February 27, 2011 9:00 PM
The following speach is what I read at the Press Conference following the announcement of the research laboratory funded by Tyler's Hope 1 million dollar donation:

 

 Thank you Dr. Good and Dr. Okun for your efforts today, and for all that you have done to get us here. 

 

A little over five years ago, our lives changed in a way that most parents would describe as a nightmare.  After a lengthy search, we were told that our oldest son had a disease that very few people knew about, that had no known cure, and for which treatments were in the research stage at best.  We went from talking about baseball gloves, basketball and X-box to learning about spinal taps, EMGs, and Deep Brain Stimulation.  In our travels we discovered that very few people, including many physicians, actually knew what dystonia was.  [My brother was certain that it was a breakaway Russian republic.]

 

We had two choices – get run over by the grief and “unfairness” of the diagnosis, or do something about...

February 19th, 2011 Too much to do with too little time and money

by Anonymous on Friday, February 18, 2011 9:00 PM
The Secret Pal left some packages for the kids for Valentine's day.

Tyler has been having some pain and movements lately and we think it may be one of his batteries is getting weak. It won't be long before he will need to get his batteries replaced. Tyler is on a middle school baseball team with some of his friends ad has been playing in games three or four nights this week alone. Yesterday Tyler was put into right field with another player and about 30 minutes into it the umpire called time out to ask why they had too many people on the field. It kind of made a spectacle out of it. Samantha sat in my lap so that I could try to hold her back up straight. She cannot get comfortable or sit still for to long. Luke ran with some kids around the park the whole time.

Samantha is going to be the honorary captain at the University of Florida's opening lacrosse game tomorrow for Tyler’s Hope. The game is the kickoff game for the 2011 season.

Luke has not shown any recent signs of symptoms and runs...

January 28th, 2011

by Anonymous on Thursday, January 27, 2011 9:00 PM
 

Today Tyler participated in the regional science fair. He was invited to participate after winning first prize in Botany at his school. He got dressed up into a shirt, tie, and jacket. He looked pretty sharp and I could tell he was pretty excited. Soon we will find out how he did and see if he is invited to the next stage which is the States. I just wish I was smart enough to help him with his projects but he has surpassed me in his ability to think innovatively. He has a slight disadvantage not being able to talk and answer the judges verbally but he compensates by typing into his blackberry answers to anticipated questions. He is working really hard to gain weight because it is a constant struggle. Tyler has also been busy attending his baseball practices.

Samantha seems to be settling into a routine at school and continues to get great grades and work hard also. She seems really happy although her dystonia conitnues to progress. Tonight she has about twenty friends coming over for her birthday party....

January 12th, 2010

by Anonymous on Tuesday, January 11, 2011 9:00 PM
 

Tyler had National Junior Honor Society meeting this morning and starts his baseball team this afternoon. Coach Griffin and Coach McGriff are coaching the Westwood Middle school team together and asked if Tyler could be an honorary member again. He is excited for those experiences again and some of his buddies from the Mustangs are trying out for the team. Tyler is concentrating on calorie intake and putting on weight.

Samantha tried turning off her DBS this weekend to see how she was affected. She had a difficult time propping herself up or holding things. We noticed that her right ankle turned in like her left normally does and her movements increased. Our conclusion is that the surgery is effective although not as much at this point as we would have hoped. Her right side- similar to Tyler- seems to gain the most benefit. Dr. Okun is going to try and get more aggressive with her programming while we look at potentially and additional surgery for another lead sometime inn the future. They have...

January 1st, 2011 New Year

by Anonymous on Friday, December 31, 2010 9:00 PM
It is that time to create new resolutions. Some of mine are the same and some are different but I did write them down.  For Tyler's Hope we have big goals for 2011 and it should all start the third week of this month with our first board meeting of the year and a wine tasting event.

We had the good fortune of being able to take the kids to Buenos Aires, Argentina over the Holidays courtesy of Michelle's parents. This was a trip that I am not sure we will ever be able to do another one like it but it was a blessing to be able to expose the kids to a different culture and language. Each of them were able to pick up on some spanish, learning many new words.

The trip was very difficult for us and expensive relative to typical families that do not have handicaped children to deal with. The first area of difficulty started with the equipment needed to be able to take the trip. We had a wheelchair for Samantha (large) and an electric chair for Tyler but neither of these will work well when taking an airplane....

December 11th, 2010

by Anonymous on Saturday, December 11, 2010 9:00 PM
This week was stressful with all of the different functions/events we were working on. Christmas parties, field trips for school, Season of Hope Race, and running the companies.

Michelle drove the kids around and went on two field trips this week with Tyler and Samantha.

The secret Pal struck again this week giving Luke money(learn to count change) and a card.

The kids are all getting very excited for our trip to Argentina. The dogs(Gator and Tebow) will be watching our friend Stephen Griffin while we are gone.

The doctors are looking into try a new lead or new unit to help Samantha. We have a few more things to try before we consider another surgery. Samantha looks and seems very uncomfortable at times. She also is "independent"(stubborn) and gets very frustrated not being able to do things for herself. We found a cool game for her to play where you put a card in a headband on your head and she still likes learning so she does her work books for fun.

Tyler plays his PS3 all the time with his friends but he gets great grades so I cannot say much.

...

November 25th, 2010

by Anonymous on Wednesday, November 24, 2010 9:00 PM
Tyler is doing ok. He has received straight As in school again and recently won 1st place in his science fair for Botany. He earned the right to move on and compete in regionals now. There were 320 entries and his school has the largest science fair in the county. This award was especially nice because last year he was frustrated when he could not propose his project because Tyler cannot speak. He was very frustrated and vowed to do better this year. I would say 1st place was better. This year he tried to decide what questions were going to be asked of him before the judges asked and had his aid hand the answers he had written down to the judge that asked the question. If it was a new question he would type it on his blackberry then keep the answer in case it was asked by another judge. Tyler still hasn’t put on weight but he keeps growing. I worry about his ability to earn a living with handicaps if something were to happen to me. He is very bright but his limitations are great. I still cannot believe that he...

October 30th, 2010

by Anonymous on Friday, October 29, 2010 10:00 PM
The secret pal stuck this past week. They each got five dollars and were very excited.

Last night was a real adventure. Tyler decided to have a sleep over for his upcoming birthday on Election Day. We worked on the bus and got it night ready (fixed running lights and head lights). We piled 9 13 yr old boys and Luke onto the bus and took them to the Corn Maize in Newberry Florida. The corn maize is pretty spooky and there were some rides for Luke to take that were not as scary. We stayed on the corn farms until around 10:30pm then came back to the house where the boys decided to play some game that is similar to hide- and- seek. Since they were all on the golf course hiding, the sprinklers came on and soaked many of them (that was funny). They all went upstairs and did some kind of wrestling base on the noise. Around 2am I went up to find that someone had mased all of the kids with copious amounts of AXE cologne. After settling down for about two minutes they snuck downstairs and raided the pantry for chips...