ABR: Two Years Later

Two years ago I got on a plane, which I hate, and traveled to Montreal, Canada to learn an alternative therapy technique known as ABR. There was little information available on this therapy, but a video I saw on Terrible Palsy had me convinced that we had to try it. It made sense to me–the questions I had about Charlie’s broken body were all answered by this therapy. The theories spoke to me.

So off we went.

The reality of ABR is simple activities done with household items. It’s about hours of hard work and not miracle cures. I’ve often joked that there’s probably a permanent dent in the couch from all the time I spent sitting there, working on Charlie.

Four different households contributed the funds required for this therapy. We couldn’t have done it without their generosity. I can say, without hesitation, however, that it was money well-spent.

The child I took to Montreal two years ago had had little physical development in first nineteen months of his life. He could roll from his front to his back. He was beginning to show awareness of commando crawling, but needed help to complete it. He could prop sit if perfectly placed, but would eventually topple. He had the desire, but that little body just wasn’t strong enough. Some people would claim that the development he’s had since was spontaneous and natural, but I would remind you that your average 13 month old can walk. Charlie could barely move at 19 months.

So what do I think we’ve accomplished with two years of ABR? I’ll break it down as simply as I can:

  1. Improved breathing and lung capacity. After we began ABR, I could actually feel Charlie’s chest start to expand for the first time. Before that, only his diaphragm would move.
  2. Improved strength–he began being able to roll on to his stomach, could commando crawl independently, sits independently in a shopping cart, sits and uses one arm independently.
  3. He can push up on his stomach and fully extend both arms.
  4. He can crawl up a one foot step.
  5. His legs are no longer frog-like and have rotated inward.
  6. He can hold his head up while looking down at a tray table.
  7. Able to get himself into the four-point crawl position ( no movement, yet)

We have baffled the doctors as his hamstrings have not gotten worse like they predicted. His scoliosis has actually improved from one x-ray to another. He is strong and healthy despite his physical limitations. In the beginning, any illness would land us in the hospital for days which was exhausting.

When we began ABR, we agreed to do two years of training. Many families that started with us didn’t finish. It’s tough. We have finished and we will be going back in about six months. I probably do half the recommended hours and Charlie still gets stronger and stronger. You should see some of the other kids–it’s amazing.

I know that many people who read this blog are interested in ABR, but have been held back by finances or travel. ABR is working on both of those things. They are in the process of hiring professionals who live in the U.S. to get trained in their techniques. They are also in the very early stages of trying to get their therapy approved by insurance companies. They are conducting several studies to measure the effectiveness of their techniques. If proven effective, this will greatly aid in getting insurance to cover the therapy.

So there ya go! Wrapping up two years of ABR and grateful that we’ve been able to experiment with this therapy. For our family, it has been truly extraordinary. apple craft

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Comments

  1. Jailen's Mom :) says:

    Sounds like Charlie experienced most of the same improvements that Jailen did with HBOT. Very interesting.

  2. I know what ABR has done for us. It has given us hope. It gave logical explanations and solutions to things everybody else just said to accept. What it is doing for Charlie, is amazing! Congratulations on your hard work and perseverance…

  3. Absolutely amazing progress!

  4. It’s obvious that you are working so hard to improve his quality of life, and as evidenced in the video clip I watched yesterday, it’s paying off! He is doing amazingly well and you should feel so proud (not only of him, but of yourselves!). Thanks for educating those of us who know very little about this stuff….

  5. Awe. Some. I remember the beginning of your ABR–never heard of it; sounded weird. You have gotten so much out of it–what amazing progress Charlie has made.

  6. I wonder if that could have helped Owen in his first years. He was a lot like Charlie. Barely moved, never crawled, spent too much time sick in the hospital. Physical therapy was just torture for both of us. Oh well.

  7. Meghan Kennedy says:

    It is wonderful how much progress Charlie has made! I am very interested in ABR for my son, who is 3 years old. But I am not sure I can do it. How many hours a day do you with Charlie? What are the sessions like? My son has little core strength and cannot sit or balance, and can only roll from his back to his tummy sometimes.

  8. Sarah O'Donnell says:

    So great to read your post as we are just 2.5 weeks from starting ABR (Montreal) with our daughter who just turned 2. I’m anticipating a lot of hard work but it seems to be worth it. I may have to come back to this post for motivation. Thanks for sharing your inspiring story.

  9. Just want to say thank you again, without you we might never have started ABR 1,5 years ago, yes it has been a lot of hard work a lot of sacrifices for our family yes sometimes i felt it wasn’t working and putting all those hours in was for nothing. But it was all worth it, on Sunday Annabelle pulled herself up on a box of toys and the box slipped away from her and she remained sitting there. My husband and I stood there crying, watching our baby girl do something we thought she might never do before we found ABR. You and Charlie are truly our inspiration, because you are 6 months ahead of us I always think well Charlies doing that, Annabelle will do it soon too! Love it, it keeps me going. Thank you, Love Sandi and Annabelle

    • I’m so glad that ABR has worked for you guys. I get discouraged sometimes too, but it really has done so much for Charlie health-wise.

  10. YOu are amazing and your sharing is amazing! Woohoo so happy that you are seeing the progress and reveling in it :)

  11. Oh, yay! I think you are the first mommy blogger I’ve stumbled across that’s also from Louisiana! Hi!

  12. We do ABR too, but we have only been doing it for about 6 months so it is great to hear encouragement from you! We have also seen amazing structural changes in our 2 year old daughter Ruby. She is slowly getting stronger and we eventually hope for full head control, rolling and sitting. It is a marathon, but we are so glad we chose ABR b/c it will be the best for her long term and already her body has strengthened so much. Thanks for the update! It is posts like these that keep me doing that pumping and ball rolling everyday :)
    Kelli

  13. Hello Katy
    It’s great to read this- very encouraging and exciting- as we are booked to start ABR in January in Sydney Australia for our son Archie aged 2 who has spastic diplegia.
    Thank you for your inspiring blog and lovely photos of your gorgeous boys.
    Elisabeth

  14. Hi there, I love your blog. Have you tried or heard anything about Hyperbaric oxygen and conductive education therapy. We are heading to Camp Ability to try both. Let me know what therapies your son has done well with and you suggest!