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Progressional Diary

July 27th, 2009

by Anonymous on Sunday, July 26, 2009 10:00 PM
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...

July 22nd Random Thoughts

by Anonymous on Tuesday, July 21, 2009 10:00 PM
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.

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July 15th, 2009

by Anonymous on Tuesday, July 14, 2009 10:00 PM
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...

July 6th, 2009

by Anonymous on Sunday, July 05, 2009 10:00 PM
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.

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