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...

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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.

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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...

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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...

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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...

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This week has been good. We have been a little concerned because Samantha has been throwing up. Her head still has a little leakage around the stitches and we have been cocnerned about an infection. She has not thrown up for several days now but gets some head aches. As a precaution we got antibiotics for her and started her on them a couple of days ago. Her hair is growing out a little so she has a "tennis ball" head with a little fuzz on top.

Tyler was feeling ill yesterday and missed his baseball game. All of us stayed at home and just rested. We had a very lazy day but it was needed.

We set up a way for Tyler and Samantha to earn an allowance but I could use some more suggestions. I don't want to give themmoney for things that they should do anyways so we came up with some things that make sense for their handicaps. For instance, Samantha reads a short story to Luke every day and helps folding laundry. Tyler keeps the back porch and yard clean of trash and sorts the recycling and takes it down...

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Both Tyler and Samantha received their grades yesterday. Straight As!!! Again. I wouldn't make such a big deal out of it if I had done this as a student but I did not. It is also very hard to tell someone to do something for their benefit that you didn't do. I stress to both of them that they need to work harder and use their brain to overcome their physical ailments. Michelle and I are proud of them. Of course Samantha wanted $50 bucks for her grades so I told her to talk to her Mom.

Tyler has been doing well. He went to a long baseball practice on Sunday and made a great effort at stopping a hard hit ball to right field. He reached up and hit the ball down with his glove. It was a great play. My philosophy on good play and achievements has really changed. It is amazing how proud something like that effort can make you. I used to think you had to be really good at sports but realize now that the amount of effort and determination of someone like Tyler in these situations is more fun to watch and...

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The biggest risk is behind us except for infections. Samantha had her brain surgery and did a great job. She didn't cry and was a champ the whole time. I was able to talk to her about half way through the surgery. Dr. Okun called us and said the lead on one side was completed and they were about to do the other side when he handed the phone to Samantha who said hello and that she was doing well. Dr. Okun took a video of her during the surgery to give to Tyler. In the video Sammy said that they found that her brain is bigger.

Everyone feels that the surgery went really well. The location of the leads is right where the doctors want to be and they are optomistic that she will see some improvements. I think this is the best team on the planet for this surgery.

Sam is home now and recovering. She had her head shaved all the way down so we refer to her as GI Jane. In a month they will burrow the wires behind her ears and down to her abdomin where they will implant the batter packs. That surgery will be...

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The time is getting closer for Samantha's surgery. I think Tyler is getting nervous for her. Today she had all of her preoperative work done and tomorrow she will be getting her MRI.  Everyone has been very supportive and believe me we are appreciative of that support. I do not believe that you get used to doing this. It seems like a huge risk every time and we are all a little nervous. I know that our doctors are the best at this and I am not just saying that. I also know that they care about Samantha and our family very much so that helps and I don’t have to threaten anyone. The surgery will be different without my father around because he was always the rock when it came to medical issues.

Samantha went to the Florida Women’s Lacrosse practice on Monday (Jan. 11th). It was awesome. I don’t think she has stopped smiling yet. They made her feel so comfortable and special at the same time. It was very encouraging. The ladies had Sammy do the cheer with them at the end of practice then took her to the locker...

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Tyler had a difficult time with his botox injections last week so he was not able to get the ones for hs jaw.

Samantha has been going through all of her prep work for the surgery next week(20th). The surgery (Deep Brain Stimulation) is about an eight to ten hour brain surgery and she needs to be awake during the surgery so that they can tell if they are in the correct location and have her move to see if the pulling can improve. We are all getting a little nervous about the surgery but Samantha wants to hurry up and get it done and try to get some relief. Dr. Kelly Foote and Dr. Michael Okun are the best so we feel it is in their hands to make the good stuff happen to Sammy now. No pressure fellas.

Yesterday we had a hat party for Samantha because she will shave her head a few days before surgery. The party was incredible. Her Godfather and family built a huge hat that the klids jumped out of for her. A lot of her close friends and supporters were there. Mandee O'Leary came and brough Samantha an...

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