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!!