A Little Bit of Everything...Updates, News, and Venting!
Since I last posted, a lot has happened! We switched Nuerologists as well as Hospitals for Brayden's care. He is now seen by Dr. Taub at Children's Hospital of Philadelphia (CHOP). She is a great doctor, has a lot of knowledge, and shares it all with you. Which is great!! Brayden had another 24 hr VEEG which he did great with! It was a little tougher now that he is older, he kept saying he wanted to go home, but in the end, he is as tough as ever and such a trooper!! The results were normal! No signs of seizure activity, or a predisposition to a seizure disorder. Which means the seizures he has are completely BHS related. This is good news, because my big concern was that he might have epilepsy. His diagnosis is, Complex Severe Involuntary BHS. I was expecting this, so no real shock. Since I last posted, I feel like we may be heading to the other side of BHS. His spells are not as frequent as they used to be, especially the severe ones. The simple spells, still happen quite often, and the downside to this is, now that he is older, he is at an understanding age. He knows he can't breathe, he struggles harder to get a breath out, which in turn causes the spell to get worse. He tries to communicate but is unable to since he can't breathe. Seeing him like this, fight so hard against this monster, and struggle, is more heartbreaking than I can express. I always prayed since first diagnosis, that he would outgrow this before he was old enough to remember, or understand. However, this is where our journey has brought us, and I can only assume that there is a reason. This whole experience continues to make me stronger as a person, and especially as a parent.
Awareness News!! A lot of exciting things are happening in BHS Awareness! Congressman Patrick Meehan, introduced the legislation for Involuntary Breath Holding Spells Awareness to the Speaker on January 27, 2014, pledging his support of our cause!! On February 10, 2014 I had a phone meeting with Congressman Meehan's assistant to discuss the work I've done, and my future goals for awareness!! He let me know that Congressman Meehan would like to know when I schedule events so he can participate!! On February 12, 2014, I met with my State Rep.'s assistant to go over the steps to make Involuntary Breath Holding Spells Awareness an official charity!! We will soon be registered with the state of PA, and shortly after nationally registered! We have an EIN, and will be incorporated!! I hope this helps everyone feel comfortable with working with me, know that my motives and my interests in this cause are pure!!
Please check out the following links
@BHSAwareness714 on twitter
Thank you!
