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Progressional Diary

September 21st, 2011

by Anonymous on Tuesday, September 20, 2011 10:00 PM
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...

September 8th, 2011

by Anonymous on Wednesday, September 07, 2011 10:00 PM
 

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...

August 15th, 2011 The Days After

by Anonymous on Sunday, August 14, 2011 10:00 PM

 The golf tournament weekend was a success. My wife, St. Michelle was awesome and organized the volunteers. It ran very smoothly. Captain Scarborough, John Marti, the doctors, and everyone did a great job and people could feel the passion. Thank you to all of our sponsors and supporters. Our reach and fund raising is strating to pay dividends and we hope to expand it greatly this year. I am excited bout some new projects we have started to fund and what is on the horizon. No new progress with Tyler. He has had some friends over the last week or so. Tyler continues to struggle with his weight gain. Samantha continues to work very hard in PT trying to build her strength in her back and hips for walking. She is doing well but has a ways to go. Luke spent all weekend riding around with th beer girls on their golf carts. He danced and ran hard all weekend. He sold kisses and made thirty dollars on Friday night in about 20 minutes.

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...