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Progressional Diary

July 13th 2011 - Rehab

by Anonymous on Tuesday, July 12, 2011 10:00 PM

Tyler is recovering from his latest Deep Brain Surgery. There seems to be no complications from the surgery. His hair is growing out like crazy already. He is still having a problem with gaining weight and works very hard to get as many calories as possible each day. His weight remains one of our top concerns. His surgery has not shown the benefits he was hoping for yet. It is early and things could change drastically over time but for now he is having a harder time with the left side of his body. He had to turn off one of the electrodes that we know was giving him some benefit. His pronunciation of words seems better although very light and low. We can understand his speach a little more than before this surgery. Tyler starts rehab this week on his left side. He is also taking a Math camp where he is getting a jump start on next years math. He said it isnt that bad, they have some fun and he is learning a lot. I am taking him and a friend camping this weekend and fishing. I look forward to it.

Samantha continues to impress us and her physical therapist with her efforts to stretch and work on walking. She is able to walk from one furniture piece to the next right now and with her determination I am sure she will be walking on her own in the near future.

Luke is in golf/swim camp this week. He got a set of golf clubs and I thought he was going to sleep with them the first night. He has been playing hard and comes home worn out. He likes to hit the ball a long ways more than putting.

Dont forget our biggest fund raiser is August 11th-13th so please contact us if you want to be involved or donate an auction item.

June 24th, 2011 Post Deep Brain Surgery for STN

by Anonymous on Thursday, June 23, 2011 10:00 PM
Samantha had been scheduled for another DBS surgery because she was not getting much of any results until about a month ago. Now she is starting to loosen up and get some of the benefits we were hoping for. Tyler on the other hand was becoming more uncomfortable with the left side of his body and the leads that he had in to affect the left sidewere not doing much for him. The doctors have been doing a lot of research and finding good results with a new target area within the brain called the STN that has been effective in giving some benefits to people that were not getting benefits from leads placed in the GPI part of the brain. Tyler decided to take Samanthas date for the surgery so they could put a new lead into the STN and hopefully give him some benefits on the left side of his body.

Tyler is much smarter than us and he really wanted to do this surgery. I was fearful of "going to the well" too many times. I tried to talk his surgeon and Tyler out of doing it but they were very positive about the hope...

May 31st, 2011

by Anonymous on Monday, May 30, 2011 10:00 PM
I was driving to work this morning when I heard a discussion on the radio about taking away communication from teenagers. The lady in the conversation said the absolute worst thing you can do in the eyes of a teenager is to take away their communication. She said they spend hours on the phone and they would see the world collapsing if you took it away from them. Thought: What is it like for my 13 yr old son, Tyler, when he cannot communicate other than texting on his blackberry. These thoughts keep me up at night but also keep me very driven to find the cure.

I hate what dystonia does to people and this planet would be much better if we get rid of disorders and diseases like this.

I am excited to work with a new group on an exciting and novel approach to finding a cure. This project has come out of the Tyler's Hope Summit and should have implications on all of dystonia as well as some other diseases. It is very aggressive.

Tyler continues to impress us with his school work and knowledge. He has straight As and is taking some advanced courses. He has decided to get botoz in his jaw and see if it will help with his eating. We are also hopeful that it will allow him to close his mouth without pushing on it with his hand.

...

May 12th, 2011

by Anonymous on Wednesday, May 11, 2011 10:00 PM
Today was a day for some reflection for me. I spent time with my mother and realized once again some of the things we take for granted like a simple thing as a breeze or a bird singing a song.

I spoke with a friend today that has a very handicapped young girl and he said it has become routine for him. I do not want the things my children deal with (DYstonia) to become routine. As much as we hate it, I want to remember that this is difficult and different so that we keep pushing forward as much as possible. Dystonia doesn't relax and it never goes away. Dystonia's symptoms don't sleep at night.

Tyler is really doing well in Mathematics. He keeps getting 100s on his tests and scores 98 when almost everyone fails. It is remarkable to me how well he does with the disadvantages he deals with. I couldn't do it and I had no excuses. Samantha is in the same boat and I credit most of this to my wife, Michlle, for working so hard with them and stressing the importance of homework.

Samantha has seen some continued improvements when she gets programmed.

...

May 10th, 2011- Recap of Ragtime Roast

by Anonymous on Monday, May 09, 2011 10:00 PM
2011 Ragtime Roast

 

I’d like to give a huge thank you to everyone who came out to support Tyler’s Hope Saturday at the first ever Ragtime Roast.

 

The event was a lot of fun and I’m sure everyone was as impressed as I was at the complete transformation of Touchdown Terrace courtesy of Dan Hathcock and Unforgettable Events.  From the bands to the singing waiters to the cigarette girls, the Unforgettable Events team thought of every detail.  I was also impressed with everyone’s costumes.  I saw flapper dresses, zoot suits, hats, tons of feathers, even people who dyed their hair for the event! 

 

I can’t do the spectacular food justice in an email but suffice it to say that Byron and Blue Water Bay served some of the best food I’ve ever had.  O!O Tapas and Tinis provided us with the liquor, wine and bartenders that kept our glasses full all night. Gator’s Dockside donated the beer.

 

Storm Roberts did an excellent job as the emcee of the event while Aaron...

April 25th, 2011

by Anonymous on Sunday, April 24, 2011 10:00 PM
The secret pal struck for Easter. Each of the kids got different things including a $5 bill. Tyler got a gift card, Luke got books and Samantha got lotions and girly stuff. The secret pal is always there for them and it is amazing that we have not caught or bumpbed into her/him.

Tyler had a CT scan a little bit ago to check if the leads were still in the correct place and it seems that they are. We are going to try and get his programming better but they want to consider another deep brain surgery.

Samantha is considering botox again for her ankles to get them loose enough to brace. If the botox works then our friend Andy thinks he can get some sort of brace to help her put prssure on her feet and possibly walk a little.

Luke scored another goal tonight in soccer and has been jogging in the neighborhood with me. We ran about a mile and a half together twice already and Luke doesn't sweat.

All of the kids made straight As on their report card.

Yesterday was Saint Michelle's birthday.

April 11th, 2011

by Anonymous on Sunday, April 10, 2011 10:00 PM
It is FCAT week at school. Tyler and Samantha are nervous but they will do great.

Tyler has been very busy with baseball, babysitting, school work(good grades), and video games. I watch Tyler and he tries very hard to put on weight but it just isnt happening. Lately I have been concerned about him because he seems a little more twisted then normal. He never complains but I can tell he is uncomfortable. He thinks that his battery is dying on one side but it has been checked and seems to be fine. They recently did a CT scan on Tyler and are checking for lead placement to make sure they didn't migrate again.

Samantha has had the best results I have seen to date from her DBS surgery. Last week she went in for programming and they truned up the setting and all week her back seems to be straighter and her ankles are definetly looser. I can straighten her feet out easily where it was a struggle to do so before. She still cannot put pressure on her legs but maybe we can get a temporary cast or brace on them...

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...