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.

...

Read More »

Back to school today for Tyler, Samantha, and Luke after a week of sping break. We had a great time all week at the beach with the kids. There were some real challenges with Samantha and getting to the beach. We brought the Jeep out on the beach eventually and that solved our problem. The kids saw lots of friends and were able to play with them when they got tired of Michelle and I. Luke learned how to play lacrosse and is pretty good at it. He catches some of the balls and can handle the stick pretty well and throw the ball really well.

Luke has been worrying me lately. It is getting closer to the age where symptoms would show up if he was to get dystonia. It is probably a little early because Samantha and Tyler didn't show symptoms until they were seven years old. It scares the crap out of me and Michelle. I really hope he doesn't get it. He spilled some things this past week and of course my first thought isthat he is having troubles but it was more than likely that he was tired from swimming and playing....

Read More »

We are spending Easter in St. Augustine Florida at the beach. The kids are on spring break.

A few days ago Luke tried to get to close to Gator while he was eating a raw hide bone and either was scratched or bit. He ended up in the ER until around 3am and recieved two stitches in the skin right under his right tear duct. The stitches are long and get into his eyes. We bought some steri strips to try and tape them down and away from his eye. He is not able to swim for 7 days because the stitches are dissolvable.

Tyler has been doing well except he was thrown into the pool (pushed his Dad to far) and his cell phone doesn't work anymore. He had his cell in his pocket. The cell phone is his best way to communicate.

It is very difficult to get around at the beach with a handicapped child but two handicapped children is extremely difficult. Samantha is not light and in order to go from the pool to the beach I have to carry her. The wheelchair will not go on the boardwalk or the beach. It is very tiring and the worste part is that Samantha knows it is difficult and feels bad about it. Once on the beach the challenge is going from playing in the sand to sitting in the water. Sammy's feet are cut and scraped up from her trying to walk in the pool.

...

Read More »

Since today is April fool's day, I thought about writing something totally off the wall and outrageous but I decided against it because I want people who read this diary to remember how serious this disorder and our mission is. It seems that we are making some progress in the research for finding a cure for dystonia. Several recent papers have been published about the discovery of some drugs that may be effective in treating dystonia. Soon there will be clinical trials run and this makes it even more important to sign up for the registry if you are a dystonia patient.

At times I wonder how life could be different and the things we could do if we were not constantly fighting the battle with dystonia. That doesn't last long but it makes me look deeply into my family and the daily tasks we both take for granted and the ones we are thankful to be able to perform.

Tyler received his botox injections yesterday in his jaw and his arm. The botox injections will help him close his jaw(he has been having a...

Read More »

Samantha has been having some sharp pain in her abdomen where her battery pack is located on the right side. Dr. Foote is concerned that this is the first sign of an infection. They called in a presription for an antibiotic that she started taking.

Today I came home a little early from work because Michelle is very sick with the flu and Tyler just called bcause he is sick also. When I picked him up, he had just started throwhowing up. Today I get a small taste of what "the saint" (Michelle) does all of the time. I have Samantha needing me to write her homework and help her while Luke is running around getting into everything. Michelle and Tyler are throwing up so I bring them water, cold towels, and whatever they need helpe with. I try to stay connected to the business so I have the phone to my ear half of the time. Sickness doesnt help the dystonia because fatigue and stress exasperate the symptoms.

I have spoken with several families lately that found out they know someone that has been diagnosed...

Read More »

Samantha continues to have some pain but continues to have less pain from her surgery every day. She went to her fisrt Deep Brain surgery programming on Thursday but we have not seen improvements yet. It is still early so we are not concerned with not seeing anything yet.

Tyler was checked last week for his programming and they found that he will need to replace his battery pack on his left side very soon. We are scheduling for it to be taken out and replaced the end of next month.

Samantha has a hard time sleeping at night. It is hard for her to lay flat on her back because it irritates her staples in her head and turning on her side is very difficult. She has adjusted some and is sleeping a little better but for several nights we have been up all night with Samantha.

Luke has woken up on several occasions and complained about his legs hurting. It is always when he is tired and I am not sure if they are sympathy pains beause he hears his syblings or growing pains or worste of all posibly...

Read More »

Samantha had the second part of her DBS surgery yesterday where they implanted the battery boxes into her abdomen. We arrived at the Hospital at 6am and she was in surgery by 8am. A lot of people recognized her from the Gainesville Sun article and some asked her if she was the girl from the Lacrosse game. It was really cool and she felt like a famous person. The surgery lasted until sometime after noon. Samantha had a hard time coming out of her anesthesia and was emotional. We ended up leaving the hospital around 5pm and headed home. Samantha has a lot of pain but we expected that. She has a hard time moving her neck and her stomach hurts from the incisions there. She had six different incisions> four in her head to run the wires down to her stomach and then the twp om either side of her stomach. She has 19 staples in her head but the surgeon only shaved a little area on her head rather than her whole head. She was turned on yesterday and will recieve her first programming this coming Thursday. We appreciate all of the well wishes and emails.

...

Read More »

This is an email we recieved yesterday that shows some of what we and others do in dealing with Dystonia.:

 

Rick & Michelle,

I first want to thank you again for allowing and trusting Tyler to spend the weekend with us.  From the ride up to Jacksonville, Tyler and Delaney laughed and had a great time together.  Our first game was against World of Baseball (WOB), coached by Clay Daniels.  They are a very talented team.  It was the top of the fifth inning and Tyler was playing right field with Tyler Ramey and WOB had the bases loaded.  The batter hit the ball down left field line and the runners scored from 2nd and 3rd.  The runner on first was a little slower runner so he made it to second and was rounding the base and saw that we were going to throw him out he made a quick turn around to get back to the base.  We threw the ball to second, but it was a bad throw and the ball is now rolling to right field.  Tyler Ramey was headed to back up behind second toward the infield and Tyler Staab held...

Read More »

This past week was packed with activity.

Samantha continues to heal from her brain surgery. She went to get an early CT scan last week because she has been having head aches. Michelle took her to Chick Filet before her CT and as luck would have it, she started to throw up. It was not a pretty seen but the CT turned out fine and we think Samantha was just starting to get a 24 hour bug. Her hair is growing out to the point where it does not look like a tennis ball as much. The hair is starting to lay flat.

Samantha was the honorary captain of the Florida women's lacrosse team this past weekend. They made a big deal out of it and had her flip the coin in front of several thousand people. They all heard about Sammy and about Tyler's Hope for a Dystonia Cure. It was a great experience and the Gators won. Luke and Samantha got a lacrosse stick(mini) to play with.

Samantha has the second part to her DBS surgery this Friday. She will have both battery packs implanted in her abdomen and the wires burrowed...

Read More »

This weekend was spent on the road with Tyler. Tyler had a baseball game (NCF Mustangs) in Leesburg. We left the house early on Saturday morning and had two games that day. Tyler was able to get into both games and play right field. We stayed the night in Leesburg and then drove over to Daytona for the Daytona 500 the next day. It was a lot of fun but very difficult for us to get around. Tyler did not bring his wheelchair. The handicapped lot was full byt the time we got the Daytona so they parked us in general parking as far a way as possible. It took us several tiresome hours to reach the track so we missed the start. It was a lot of walking for Tyler and I carried him on my back as much as posible. We ended up leaving before the race was over so we could try to make it back to the car.

Samantha and Luke stayed home with Michelle. The Secret Pal sturck again. What a wonderful person. The Pal always lifts the spirits of the kids and reminds me of the important days like Valentine's. Thanks again because...

Read More »