So Much to Say...

It has been about 2.5 months since my last post, and I do apologize for that!  We have been very busy in this house between homeschooling, working towards awareness of IBHS, and we are preparing to relocate!  Now that the school year is ending, there should be more hours in the day for me to stay on top of blogging! Pretty funny concept...more hours, lol!  So here we go!

IBHS Awareness:   If you haven't been following along with our efforts on our website Involuntary Breath Holding Spells Awareness  or Facebook than you have probably missed some very exciting news!!  On May 8 2014, a Tribute was passed in the state of Florida, recognizing BHS as an involuntary condition, and encouraging the residents of the state to recognize July 14th as Involuntary Breath Holding Spells Awareness Day.  This would not have been possible if not for the efforts of Tina Underwood, whose daughter suffers from this condition.  Tina is our Florida Rep for Involuntary Breath Holding Spells Awareness, so if you or some one you know lives in Florida and is caring for a child with IBHS, and is looking for support, please let me know!

On May 15, 2014, myself and my 3 sons attended an event at a local restaurant Campbell's Boat House called Causes for Kids Night!  This is a fantastic event that more venues should consider hosting so nonprofits can get the word out on their missions.  We set up a booth with information on Involuntary Breath Holding Spells  and talked to attendees about what my mission was.  It was an amazing night!! The response received was incredible.  Everyone was so willing to learn about this condition, and they were surprised that it wasn't what they thought it was.  I have to hand it to Campbell's Boat House, this was a great way to spread the word, build awareness, and network with other causes, and the public on what my mission is.  I can't thank them enough for the opportunity this was for me!

Currently, I am preparing for IBHS Awareness's first Benefit for Awareness!! On June 14th at Casey's of Ridley Park, I am hosting an event to help spread awareness, and raise funds to print and distribute information pamphlets to pediatrician offices and ER's.  There will be raffles, open bar, and buffet.  So if you are in the area, I hope you join us!!

Living With IBHS:  I am happy to report, that I don't have much to report in this area!!! Brayden has been doing really well.  He has simple IBHS when he gets upset and cries.  He only has severe spells if he gets hurt real bad.  I am starting to see a return of these spells.  Most likely because the weather is nice so we are outside more, and his knees are no longer protected by a layer of clothing.  Honestly, I still get upset when he has a severe spell, I get angry when it happens again, and for the fact that he's almost 4 and its still happening.  I really hoped by this point it would be a distant memory.  After the spell is over, I come to terms with it quicker, I snap out of the "funk" it puts me in, and I remind myself that everything happens for a reason.  Brayden's recovery time is much better as well.  If the spell is severe and causes him to sleep afterwards, its not for as long a period of time as it used to be.  When he wakes he's a bit crabby at first but he comes around.  I'm sure that his improvement is helping with mine.  It is heartbreaking as a parent to watch your child suffer, the less he suffers, the less my heart has to break.  I look forward to the day, when I can report that he hasn't had a spell of any kind in month! That day will come!!

Awareness News!!

Things are moving along in growing Involuntary Breath Holding Spells Awareness!  On Monday March 17th 2014 I submitted the paperwork to my State Rep's office to register as an official nonprofit organization!! This is very exciting for me! Making this official is a big step as we move forward in gaining national awareness! According to the paperwork it takes 10-14 days for this to be completed, so I am counting down!! 

Our first fundraiser was a huge success!  The awareness t-shirts look awesome, and as you can see from the picture above, they look great on our kids! Wearing this shirt is a great way to show your support and spread awareness of this involuntary medical condition. If you were not able to purchase a shirt during this fundraiser, I will be running the booster again in the summer!

I hope those who found this blog from the beginning are still following us today.  Our format has changed a bit, as Brayden's condition has improved, and so the focus has turned to more of an awareness forum.  However, I am always available to talk to anyone looking for support while they are living with this condition.  In fact, I added a "contact" form to the right side of the blog that I hope you use if you need support.  If you are new to this blog, feel free to read through from the beginning, as I am sure you will find a little bit you in my blog!! 

Thank you for supporting and following along on our journey with Involuntary BHS! If you would like to get involved in efforts to spread awareness please use the contact form on the right.

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

www.BHSAwareness.com

www.facebook.com/BHSAwareness

www.booster.com/BHSAwareness

@BHSAwareness714 on twitter

Thank you!