Well my baby bo…

Well my baby boy is now 8.  I would suspect for most parents of boys with DMD that birthdays are bittersweet.  We want our children to grow up but fear what getting older may bring for them.  I do have more hope than I did before starting VECTTOR but it’s still in the back of mind.  I can’t help but wonder what his future holds. I hope that a cure can be found and so many parents can have the weight of this worry lifted.

Levi is doing so well.  His teacher let us know that he will be in the regular 3rd grade classroom next year instead of having to go to the multi grade class for half of his school day.  This is very exciting for him.  This shows that his cognitive skills are improving!  He has been in the multi grade classroom since kindergarten so this is a big step.  We are so proud of him and all that he is accomplishing academically. 

Physically we are also seeing exciting things.  While he still struggles climbing the pool ladder or getting into our SUV we have to remind ourselves that these were things he was not able to do just a few short weeks ago.  For him to be able to climb one or two steps on the pool ladder is a big deal.  He still seems happier and he is definitely still eating more food! 🙂  His energy level is what is so great to see.  Instead of tiring out and going inside after a few short moments of being outside he runs and plays without losing so much energy.  He loves the swimming pool and can do so much under the water.  I think it makes him feel more mobile and anything I can do to help him feel more free is worth it.

Have a great 4th of July tomorrow! We will be playing with fireworks and enjoying our time off together. 

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5 thoughts on “Well my baby bo…

  1. Hi, my name is Heather Ashley. I was reading your story and almost started crying. Your story sounds identical to ours. We started the Vecttor treatment with our son July 22, 2012. It has truly been a miracle for our son Haden who is 7 years old and has DMD. With no other options available to us besides steroids, witch I didn’t want to do, I started looking on the Internet. I also found the Vecttor treatment on YouTube! I still look back and think what a whirl wind it has been. I found out about the treatment and 2 1/2 weeks later we were sitting in Dr. Rhodes office. My stomach was tied in notes while we were waiting for the first time hoping and praying that it would work. I’ll never forget Dr. Rhodes correcting me when I kept saying “if it works” and him saying you mean “when it works”. Haden has also had so many accomplishments since we started treatment . I would love to help in any way I can to get the word out because I totally agree with you, the Vecttor treatment should be something that is readily available for kids with DMD. Please email me and I can talk to you about what my husband has in the works for the Vecttor treatment on TV. My email is banner_kennels@yahoo.com Thank you so much for having the strength and conviction to share your story and stand up for something that really works!!!!!!!!!!!!! Seeing is believing.

  2. Hello,
    I have a 7 year old son that has DMD. We started the Vecttor treatment in July of this year. It has really been a miracle for him. Please email me at banner_kennels@yahoo.com I would love help you spread the word about the Vecttor treatment in a positive way. Thank you so much for speaking out for Dr. Rhodes
    Sincerely,
    Heather

  3. Please tell us how your son is doing on the Vector Treatment. My 3 year old son TJ was recently diagnosed with Duchenne. I found an alternative doctor who is trying several supplements and wondered what Levi’s regimen is. Thanks!
    TJ’s Mom

    • Tammy, Levi is still doing very well. He’s still walking full time (he will be 9 in June) and his energy levels are good. He can’t walk for more than 10-15 mins at a time is the only thing we have noticed that has kind of plateaued, but he isn’t getting worse. His cardiology appointment went great and he has no heart issues at this time. He scored two points higher on his Northstar strength test at the Neurologist (which is a big deal to us because we have been told by everyone that the strength tests only decline.) We are happy with the Vecttor treatments. We do an 80 minute treatment in the morning before school (usually while he’s still asleep, lol) and then we do an 80 minute treatment at night time before he goes to sleep. The Vecttor definitely fuels his appetite and he doesn’t walk on his toes near as much as he used to. His balance is better unless he has done a lot of physical activity that day, but that is to be expected.

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