Tyler seems to be doing better while Samantha progresses.

Tyler is growing up and adjusting to his dystonia but it also seems that his DBS is more effective than ever. He is able to do more things lately. He went camping this past weekend with his "uncle dewey" and a boy his same age. He has wanted to go camping for a while and he had a blast. They had a camp fire, cooked food, didn't wear shoes, told ghost stories, etc...

Samantha is having more difficulty each day but we are holding out on the surgery for now. We just received confirmation that her experimental drugs were shipped and we should get the very soon. It is harder for her to walk, use utensils, and dress herself because the dystonia is in most of her limbs. She is having a difficult time sitting up because of the strain on her back that is now affected. Thank God she has not shown any symptoms in her face, speech, or jaw.

Luke is Luke still. He enjoys terrorizing the new puppy "Tebow". He is always very active and shows incredible...

Read More »

One of my biggest concerns for my children is their ability to work and earn an income. I think it is important for them to be able to do something that they can be proud of that will allow them to take care of themselves financially. I am thinking about saving up for a custom lawn mower that Tyler can use with a joystick control. If we could start a lawn care business then someone could drive Tyler and the mower to the yards they would care for. Tyler could cut the grass and do things that he could be proud of and could earn him an income if I am not around one day. We could market it with ten percent going to Tyler’s Hope and hire other handicapped people. We could then market the mowers to handicapped people all over that would give them the same opportunities.  

 

It dawned on me while spending time with my mother that my father and mother would have had a good time in the retirement home where my mother is now if they had moved in together while my father was alive. I started to think about what I should plan for when Michelle and I get older and we need to simplify our lives. A retirement home would be nice but unfortunately that may not be an option for us if our kids are handicapped. We may need to take care of them and they may not be able to help care give for us. I need to make enough money to pay for Michelle and I and for each of the kids when we are not around. UNLESS, we find a cure.

...

Read More »

Our friend that went through the brain surgery to have a tumor removed is doing very well and is quickly recovering. It is amazing what those surgeons can do.

Samantha had a doctor’s appointment since the last time I wrote in the diary and the doctors want her to get Deep Brain stimulation surgery. They verified that the dystonia has shown up in her back and right now is pulling on her right side.  This is very scary for Sammy and for us. They want us to do it during the summer so that we do not need to do it while she is in school. We are going to try the new medication first and attempt to wait at least until next summer when she will be nine and the skull should be done growing.

The kids were at the Nickelodeon hotel this week with their mother and “Memaw” (grandmother). They had a blast because they didn’t need to travel very far to go to the pool or have things to do.   They did go to Universal Studios one day and had a bad experience. They were trying to load Tyler’s electric wheelchair at...

Read More »

Back to work today. The kids are getting excited because Michelle is taking them to Disney this week.

Tyler was feeling sick all day yesterday with a sore throat and Luke developed pink eye last night. Samantha’s back is still probably the scariest thing for us right now. We are trying to hold back on getting DBS for Samantha until she either gets worse or older. We went through a dramatic brain surgery with one of our close friends last Thursday and it was a successful surgery. Dr. Kelly Foote is the man! It reminds me that in many aspects we are lucky to live so close to these incredible doctors. I am not just saying that because I have such a connection with them now but because everyone from all over says that. They are not just brilliant neuro scientists/doctors but genuinely caring and special people.

Our Fourth of July weekend was fun. We went to a couple of parties with the kids. Luke ended up punching a boy for "pushing Tyler down" but it ended up that Tyler just fell. He felt bad but how do you fault a four year old for sticking up for his 11 year old brother. Sammy and I have a date night planed for tonight after we hold a golf tournament meeting.

...

Read More »

This week Michelle and Tyler went on their trip to Washington DC with Tyler's class for the annual safety patrol trip. I am not sure who was more excited about the trip, Michelle or Tyler. Tyler was able to take his electric wheelchair on the bus. Michelle said they walked many miles the first day so it is very good that the school was able to work out a handicap accessible bus. The bus driver has been very good to Tyler. Having his chair is essential for him to be able to keep up but it would have been worse with his dystonia acting up due to fatigue. The fatigue comes from lack of sleep. They did not sleep much on the 16 hours bus trip and I don't think Michelle is getting too much sleep now.

I have been enjoying spending time with Samantha and Luke by myself. We have been swimming a lot and last night we went to Yamatos for dinner. We saw Tim Tebow there last night. For those of you who do not follow football, Tebow is most likely going to be considered historically as the best college player ever but the thing that is most inspiring is how he motivates others by being such a good/caring person. Tebow is a real role model.  Samantha is not a small girl so it is much more difficult for me to pick her up than it is to pick up Tyler. Her left foot is very turned in right now but she is due for more botox in a couple of weeks. We play games while swimming but it is getting more obvious the difficulties she has with her legs and arms when she tries to swim. She loves to swim but you can see how hard it is to propel yourself without the ability to control your leg movements and even raise your arms over your head to swim.  She has been killing me in games like UNO.

...

Read More »

 

Today is the last day of school for both Samantha and Tyler. We are very proud of them both for doing so well. We know of so many dystonia sufferers that are unable to continue to go to public school or struggle because of medications and symptoms. Sam and Tyler are definitely fighters and excel regardless of their dystonia. Sam and Tyler both received principal awards, which means they had good attendance and good grades throughout the year and bug awards which means they brought up a grade without dropping any. Tyler received the President's award for maintaining a 3.8 or higher all year and earlier this year he was awarded the citizen of the month award.

Today their school gave out the Tyler Staab Award again to the student that is chosen to have excelled academically, never gives up no matter what challenges they are faced with, is kind to others, shows integrity, etc… This award is given each year by Mr. Hall who comes up from south Florida to present the award to the student and parents of the winner. This year's winner is Yuanqi "Reggie" Cai who received every award possible including perfect attendance. Yuanqi Cai received a trophy, his name on a plaque at the school as the third recipient of the award, and $750 was donated to Tyler's Hope for a Dystonia Cure in his honor.  

...

Read More »

The first day of the hurricane season.

I started writing this blog when Tyler was diagnosed so that people could understand what dystonia is like as he progressed. I found out that the blog acts in many ways that I did not anticipate. Doctors from overseas have emailed asking about updates because of their curiosity with the progression of the symptoms as well as the treatments. Patients and families have emailed me saying they read it to see what to anticipate with their symptoms or loved ones. I try to give some insight into what we as a family deal with while dealing with generalized dystonia. I rarely if ever talk about too many things outside of what is directly affected by the dystonia. There are many struggles and great things that happen to us as a family that I could not put into a blog. Everyone has their own struggles but by airing out some of my families dealings with dystonia I have seen where it has an impact on individuals that may normally have taken things for granted or need a subtle reminder...

Read More »

This weekend is the Garden Party fund raiser in Raleigh held in honor of Samantha. Samantha was excited because she and Michelle were able to fly up for the event. It will be a great girl’s get-a-way.

Michelle and Samantha were concerned with how they were going to get around in North Carolina since Samantha needs a wheelchair most of the time now. They called the airlines and were told they could ship the chair through or even leave it planeside as they took their seats. Things never go as smoothly as people say they will. Their flight took them through Atlanta with a two hour layover. They sent pictures of the two of them making faces and playing around so I was happy they were having fun. They asked the check in desk if they could preboard and go to their seat first so that Samantha would not have as much difficulty going down the aisles as one of the last on the plane. They were told that would be fine but when they tried to board the plane they were told they had to wait for their zone to be called....

Read More »

Samantha has been feeling some pain and complaining of her body jerking and pulling. Her left foot is also turning in more. I spent some time last night trying to flex her ankle and foot but it was harder than usual and she grimaced some in pain. Although we do not talk about it much, I am a little worried of how her symptoms will progress. Will it affect her back? Will it affect her speech and eating like Tyler? What is the next area we will need to deal with?  I just found out that the secret PAL visited the house today and brought Samantha a cool orange and blue bracelet for her first communion. She was suprised and after all of ths time we still don't really know who the PAL is.

I almost feel guilty saying "we" because my kids and others live with the pain physically and have to endure the handicaps that we do not have to. It will eat you up thinking about how dystonia affects people and you cannot help. I will do anything for my kids to make them feel better and have the same advantages as others but...

Read More »

The in-laws from Miami came into town to see Samantha's first communion. My father-in-law is Jewish so it was big to get him to the church for Samantha. We caught him trying to take the money out of the collection basket until we told him to put money into it. They are good people and always support the kids and us very much.

Samantha did great at her first communion. She looked beautiful in her dress. Samantha has had difficulties walking as she has progessed so she was in a wheelchair throughout the first communion. A friend of hers, Grace, helped push her chair and it was really nice. Samantha's aunt Barb drove down from Atlanta to support her as well. Samantha's godfather spent all day with her and was wonderful to the kids as always. Between getting her godfather back into church and getting my father-in-law into a church, I was looking around for some crazy excitement to start up. If you know either one of these guys you would understand.

I spent about 35 minutes last night stretching Samantha's...

Read More »