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On Friday September 30th Samantha had surgery to replace a battery for her DBS that was failing and weak. We are hopeful that with the battery replaced she will have more mobility. Samantha was tripping and having more difficulty walking leading up to the surgery. The surgery went well other than the common problem she has of not being able to get a good IV started. She will be healing up this week but able to go to school and do most of her normal activities.
Tyler started college at Santa Fe and is taking a few casses this semester to get acclimated. Tyler also works for the InterMed Group during the week entering data in the service database. Tyler has been producing some fun videos for his interest in cars and some of the audo shows. Luke continues to try to heel a bad lession on his knee and was given another six weeks of no pressure then they will re-evaluate his knee and hopefully clear him for rehab. Luke is doing wellin school and works hard to keep his grades up.
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It has been a while since my last update and thank you to all of the people that have reminded me to do so lately. The Secret Pal has been consistent and the love and encouragement they get from the Pal cannot be measured.
Tyler is 18 and graduated from Queen Of Peace. He has really been struggling physically lately because his batteries are dying. He takes a small amount of medication now when he is really hurting and his surgery to replace the batteries is this Friday. He has started working doing data entry with InterMed Group but this week he took off work to spend time with a great group of his friends from Tennessee. These boys all met on line playing video games originally. They drove down to spend five or six days together and met in person for the first time. They have gone to the beach, lake, springs, and done a bunch of cool things together. It amazes me how understanding and helpful these kids are with Tyler. The first day, I saw Yaeger carrying Tyler down to the lake in his arms. These are... Merry Christmas!
The secret pal has shown up a few times again lately. First on their birthdays and now again with Christmas gifts for the kids. I must confess that after many years I finally found out definitively who the Secret Pal/pals have been. I am sad to know because I really didn't know for sure and it was very mysterious. I am up at all hours of the day and never caught the ladies leaving the presents. The kids still don't know who it is and I'm not telling them unless the Pal wants me to? Tyler has been lying on the couch the last few days recovering from a surgery he had to close back up his stomach after removing his feeding tube. He really wanted to get rid of the feeding tube so he did. The recovery is painful for a few days and even more so when your dystonia is always pulling on the muscles that are trying to heal. The next few weeks we will be watching to make sure Tyler doesn't develop any infections as this area is prone to infections. Tyler is graduating high school this year... It has been a while since I last wrote an update. The blog started out to give an inside look into daily life with dystonia but it is hard to give an update when things don't change much. The blog is about dystonia and my family's struggles or triumphs with Dystonia, not about the foundation.
I have met several people this week that have had dystonia for many years and their families are affected(children and adults). I love meeting these people and sharing stories as well as encouragement. Both Tyler and Samantha have been doing well by getting good grades in school and being active. Tyler and I recently went on a father/son trip to Idaho fly fishing on the Snake River. This was an incredible experience and a trip I will treasure and never forget. Other than being scared to death by a huge bull moose that wondered into our campsite, we spent time with one of Tyler's best friends and mentor, Stephen Griffin. Our other guide Ryan Todd took care of us by putting us on the fish and making sure we had the best adventure possible. These guys got a contraption that a vet made for people with one arm to be able to fish. It is a harness that strapped to Tyler's chest and held the reel in place while allowing him to take the rod off to cast and mend the line separately. He caught a ton of big fish and impressed me with his abilities. The contraption is unbelievable and will change the lives of many allowing them to fish when they could not before. Sometimes things start to align and we push forward at an accelerated pace.
We are in the final steps of our Alignment grant which is funding a new collaboration of great universities and researchers with a potential huge outcome. The groups have demonstrated success in a new pathway towards treatments and a cure and have received additional confidence in their findings through the NIH. The Tyler's Hope 10 for 10 program has been launched and one of the first people to participate is a great supporter of the Tyler's Hope foundation, Florida governor and future presidential hopeful, Jeb Bush. Both his financial and intellectual support are making a difference and will continue to push towards a cure for dystonia. Beating Dystonia Daily: Tyler has straight As in school and is in four honors and AP courses. Samantha always has straight As. They work very hard through some of the debilitating symptoms toward their honor roles at school and of course we are very proud of them. Luke does... When we started this war on Dystonia, we knew that passion and emotion would play a huge role in our momentum, and that our ultimate victory would include challenges and heartbreak on the path to the finish. Tyler's Hope has become a force in the quest for a cure, our confidence is high and we should all be intensely proud to be pushing Dystonia into a corner. But is with a very heavy heart that I share with you the loss of one of our most promising warriors. Don Beardsley, Tyler's Hope Ambassador, husband, father, entrepreneur, and fearless friend, passed away Saturday after a massive heart attack. None of us were prepared for his loss.
Don was introduced to Tyler's Hope by my brother Ken at a bar (big surprise) after a golf tournament in Miami a few years ago. After hearing the details, and seeing pictures on the website, Don broke down into tears and made a vow to be a part of the solution. He had no connections to the disorder, just a huge heart and the recognition that his kids... I hope everyone had a great Holiday Season and will continue to have your dreams come true into the new year.
I try not to tell our life story in these updates but rather focus on the struggles with Dystonia and changes we see as they arise. Tyler is doing well in school and works hard at keeping his grades up. He recently got into fishing and we have worked at figuring out how he can do this because he does not use his left arm at all. I took him to our local lake recently to try his new fishing pole out tat he got for his birthday. What a disaster that was. It was a cold and windy morning and I was not very prepared. We were winging it in order to make it happen. The trolling motor did not work and did not have a battery but we loaded the john boat and started paddling out. Each stoke I took with the oars dropped a significant amount of cold water into my lap. The weeds had grown up and the wind was blowing so it made getting around more difficult. Once we were out the wind kept blowing us back into the weeds but we were determined for Tyler to try his new rod and reel. Evidently when I bought the rod and reel the line had been n it for a while and built a memory that did not allow it to cast without back lashing. The combination of light tackle, winds, old fishing line, and Tyler casting with one arm were not good. Every cast was a struggle and when he got it to work we got caught in the weeds or the line got tangled. The frustration made us regroup to try another day. My friend Will Moore helped get Tyler set back up with a new fishing line and we are ready to do it again. |
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