Talk About Irony...(and some extra news I'd like to share)!

Well as of yesterday, Thursday May 16, 2013, Brayden has gone 2 weeks with no spells or seizures!  This is very exciting news here!  So 2 weeks ago, we started using doTerra Essential Oils (http://www.mydoterra.com/lisacramer) on Brayden to try to "manage" his condition.  Having been through so much to try to find answers and help for him I was understandably skeptical that something so "outside the box" would work.  Two weeks later the only sign of this condition continuing to lurk is the fact that when he gets hurt, or upset he does lose his breath...but then he catches it again!  The loss of breath isn't even long enough for his face to change color.  It is amazing, I really don't know how else to describe it!  We use Frankincense on the bottom of his big toes, and Balance on the bottoms of his feet during the day.  In the evening we put Serenity on the back of his neck, and lavender on his temples.  What an unbelievable difference.  It's ironic that such a complicated condition would have such a simple management plan!  It's now hard to get used to the fact that he isn't going to lose consciousness or have a seizure! Each time I prepare for it, but nothing happens, its crazy.  Anyway, we are very thankful for this break through, and hopeful that these oils will continue to do the work that medicine couldn't!

And in other news...

As you may have already read, myself and another mommy of a breath holder began discussing starting an advocacy group to raise awareness for this condition.  On April 26, 2013 I met with my state rep to get advice on how to proceed with this idea.  Not only was he nice enough to give the advice I was searching for, but he went a step further to make this dream an even bigger reality!  State Rep Miccarelli is introducing legislation that will bring awareness of Involuntary Breath Holding to the forefront by recognizing July 14th as Involuntary Breath Holding Awareness Day! He wrote a letter to CHOP (Children's Hospital of Philadelphia) to get them involved as well!  The hope is that by bringing awareness, no other parent will have to leave a hospital with their child feeling completely lost and helpless.  I am very excited about this opportunity!  I began building a website, and designed awareness merchandise, with the help of another mom I created a survey for parents of breath holders to complete so I can be sure that the website is tailored to everyone's experience with this condition, and I petitioned the White House to bring awareness to this condition and push for further research, and for more education for medical professionals in regard to Involuntary Breath Holding Spells.  My dreams are big and my hopes are high for this project.  I hope our experience as parents of breath holders can help others feeling the isolation of this condition.  If you would like to get involved in these efforts please let me know! To show your support by signing the petition, please follow this link http://wh.gov/JnDU.

Thank you!