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Progressional Diary

January 22nd, 2010

by Anonymous on Thursday, January 21, 2010 9:00 PM
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...

January 14th, 2010

by Anonymous on Wednesday, January 13, 2010 9:00 PM
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...

January 11th, 2010

by Anonymous on Sunday, January 10, 2010 9:00 PM
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...

January 3rd, 2010

by Anonymous on Saturday, January 02, 2010 9:00 PM

Happy new year! The kids all had a great Christmas and a fun new year's eve.

The Secret Pal struck again over the Holidays and the kids got gift certificates for Target. Tyler had showed some frugailty one he had to use his own money to purchase games for his game system by not picking games that were too expensive or if he could get the same game that was one year older.

We were able to spend lots of time together with the kids over the break. All of us are getting anxious about the surgery. We have plans to dedicate one million dollars this month to the University of Florida(over the next couple of years) to recruit some researchers we have been talking to in order to create  a successful research team in pursuit of the cure. This year we are being very aggressive and I feel some big things are going to happen in 2010.

December 20th, 2009

by Anonymous on Saturday, December 19, 2009 9:00 PM
 

Samantha continues to be very uncomfortable and shows more ballistic movements. Sammy's body seems twisted all of the time and her neck stays pulled to the right. We received her directions and preparation information for her surgery in exactly one month (January 20th). Samantha is excited about shaving her head because she is going to donate her hair to locs of love but she is anxious about the surgery.

All three of the kids were given the task of choosing a charity to give their money to. Each was able to give $15 and each chose a different charity. Tyler and Samantha looked their charities up on the net and were able to tell us what it was for. Tyler chose Peaceful Paths, Samantha chose March of Dimes, and Luke chose the Lineberger Cancer Institute in honor of Mary Brooks Seagroves (because they saved a mother).  Michelle and I will be cooking dinner at the Ronald McDonald house on December 30th with my company.

 

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December 8th, 2009 The nightmare continues

by Anonymous on Monday, December 07, 2009 9:00 PM
 It seems like our focus has been turned a lot towards Samantha. Tyler continues to deal with symptoms of his dystonia that most people could not comprehend but his resilience has afforded Michelle and I some tie to deal with the next wave of unexpected symptoms. Tyler no longer uses his wheelchair which allows him to have much more independence with simple things to us like using the bathroom. He still needs help with those type of tasks but not as much as he once did. Tyler also gained 3 lbs on his last visit which is huge for him.

Samantha on the other hand has progressed rapidly as of late. Her ability to manage by herself has drastically decreased. Management of her symptoms are nothing to us because we do not mind doing whatever it takes for her but sometimes we are helpless to give her comfort. Both psychologically and physically she has been much more uncomfortable. I am staying up each night now and not sleeping again trying to do as much as I can while I am home. I watch my daughter have difficulty...

Thanksgiving Day November 26th, 2009

by Anonymous on Wednesday, November 25, 2009 9:00 PM
Happy Thanksgiving!

I have not been able to update the diary for a little while due to a recent shoulder surgery I went through. I didn't feel up for doing much probably because of the Percocet.

The kids have been doing well. Tyler has nothing out of the ordinary to report but has taken a few falls lately and it seems it is because his DBS turns off. We are trying to figure out what is causing that to happen. Ty continues to play baseball on the North Central Florida Mustangs and has seen more playing time in the field(right). The coaches are great with him and it makes a huge difference in his life.

Samantha is uncomfortable a lot. It is hard for her to sit still. Her back twitches and pulls so much that it will throw her to the ground or make it very difficult to fall asleep. Fatigue makes dystonia worse so it becomes a viscous cycle. We are all eager and scared about her January 20th date for DBS surgery.

Luke occupies his time with Sponge Bob, dancing, drawing, and playing catch...

Tuesday November 10th, 2009

by Anonymous on Monday, November 09, 2009 9:00 PM
 

I am in Charlotte North Carolina with my mother this week. I am able to catch up on a lot of the things I have not been able to catch up on for a while but I miss the kids and "the Saint"(Michelle). I just got back from Washington DC where we held the first Dystonia Coalition meeting and it was a huge success. I am excited about what we can make happen for the development of a cure and treatments. Email me if you want to know more about the coalition but it is too much for a diary.

Reports cards came out last week. Tyler and Samantha got straight A's. Luke does not get letter grades but was evidently asked four times for his hand in marriage.

Samantha had a sleep over at a friend's house last week with several of her friends. She had a great time but when she gets tired she stresses. It is embarrassing and difficult for her to crawl to the bathroom when she needs to go. I think about how they deal with crap like that all of the time and sometimes it makes me very angry. It is hard to fight...

Monday November 2nd, 2009

by Anonymous on Sunday, November 01, 2009 9:00 PM
How great is the Secret Pal? The secret Pal has visited the kids twice this week, once for Halloween and the other was this morning for Tyler's birthday. This is a special person to my kids and us and always keeps us positive through anonymous giving. Whoever you are I am sure you are a happy and fulfilled person.

This weekend was the 1 year anniversary of the loss of my father(Dr. Edward V. Staab) and a very important man to not just my family but many more. His impact on society, medicine, Tyler's Hope for a Dystonia Cure, and his family will not be forgotten.

Today is Tyler's birthday and he turned 12. Wow, he is growing up and as parents, Michelle and I could not be more proud of him. From Tyler's school work to his compassion for his siblings, Tyler is da man! I try to learn from him every day on how to make the best of things and be positive all of the time. I can swear to the fact that there is never a day or probably 1 hour that Tyler doesn't smile. Tonight, Tyler and I are going to Hooters...

Tuesday October 27th, 2009

by Anonymous on Monday, October 26, 2009 10:00 PM
Tyler had six boys over this weekend for a sleep over. Since Tyler's birthday is Novemeber 2nd they celebrated early with the sleep over and then the next day they went and played paint ball. They had a lot of fun. After staying up all night and playing soo hard, Tyler slept most of Sunday. We checked his batteries on Monday morning because his left side was pulling and uncomfortable and we found that he was turned off. This showed us that although the system isn't perfect, the DBS is working.

Tyler and the six boys came to Michelle and said they all want to do something for Samantha's surgery. They said they want to raise ten thousand dollars in honor of Samantha before her surgery. They said they will all dye their hair pink if they can do it. The coolest thing about them coming up with this idea is that we had nothing to do with it and these kids wanted to do something for Samantha although they give her a hard time all the time. Pretty neat to have an idea to help a charity when you are 12 years old...