Time Heals All Wounds...or does it?

I just realized how long it has been since I last updated this blog, and I apologize to anyone who has been following this blog, or looking to it for information, support or understanding.  I can blame it on the fact that it's summer vacation, but I know that is not good enough. BHS does not take a break, worrying about your child does not take a break, and neither should I! I started this blog to put more accurate information out there about BHS, by detailing our daily struggles, and successes, and I will continue this cause so no other parent has to suffer the feelings of helplessness that I had to when our journey began..  So here we go!

I last left you with the information that Brayden's case was being reviewed by a team of neurology specialists.  I have not heard back from his neurologist at this time.  As you probably guessed, I am trying to be patient and failing, lol.  DuPont Neurology will be receiving my call first thing Monday morning!  

In the world of politics, legislature to bring awareness to BHS was introduced in Harrisburg in June, and the goal was to have it voted on in July.  I have yet to hear an update on this.  I emailed my reps office a week ago, and still have not heard anything! The waiting game is sooooo frustrating!! Especially for an impatient person like myself! I am trying to remain patient, as I know, my state rep is continuing his training for the Army right now.  However, I will be emailing his assistant, and will forward info as soon as I have it!.

Brayden is doing very well actually! The only success I have to report out of the 3 goals I am trying to accomplish! lol.  In the past 3 months he has only had 2 seizures! He continues to suffer from BHS, but of the mild variety.  His BHS are still caused mainly by upset or injury, they are still Cyanotic.  His heart stops, he turns blue, but after he is blue for a bit, he starts breathing again.  In the past 3 months, he has not lost consciousness or had a seizure as a result of BHS.  This is a HUGE accomplishment, and a HUGE relief for me! 

Brayden just turned 3, so I am considering taking him off the oils and the melatonin (which I use to help him sleep at night).  I read that individuals who suffer from seizures, have a susceptibility to seizures when they are exhausted, which is why I started Brayden on melatonin (1ml 30mins prior to bedtime).  This "test" scares me, but I know I can't keep him on the oils and supplements forever.  I know I have to experiment with no "alternative treatments" to see if its Brayden "growing out of" this condition, or if its the supplements giving us all our successes and milestones.  I pray its the latter! 

Brayden is very slowly gaining weight back since being off Keppra.  Since his last appt 3 months ago, he has gained 1lb!  Although small, we celebrate all our accomplishments and milestones!  Brayden is a good eater in that he is not picky, like his older brothers, however, at this age, he much rather be running around than eating.  So the weight gain will come in time!  And I am so excited that he is interested in running around again after seeing him so spaced out and unresponsive due to the Keppra.

Brayden at his Dr appt 8/1/2013 (Dr Rollnik)

So, as you can see there is a lot going on right now.  But BHS does not stop so life can continue.  Quite the contrary actually! Life continues despite BHS and all it's "heart stopping" moments!  My oldest will be starting 5th grade in a month, which is soooo unbelievable to me! Ryan, my second son will be starting PreK in a month! Brayden, although he will not be starting formal school, is so smart! He does addition in his head! He knows all his shapes, colors, numbers and letters!  He is athletically inclined, energetic, smart, funny, and oh so loving!  I am so lucky!  On top of all this we are planning a rather big move!

Over the past few months, of starting the BHS Awareness campaign and website, I worried that despite these small efforts, they would not reach those that needed the support most.  Remembering Brayden's first severe BHS and our first trip to the ER, after experiencing what felt like the death of my son in my arms, I was so upset that, parents like myself, wouldn't find our resources.  I will never ever forget what it felt like to hold my son, limp in my arms for the first time, sit in the ER waiting for the first time, experience the ignorance of BHS by the medical professionals for the first time, leave the hospital not knowing what to do next for the first time.  That feeling of helplessness is the worst by far.  I am so used to being able to kiss my children's boo-boo's away, but this is one boo-boo I can't kiss away.  This is a boo-boo, that may potentially (depending on the outcome of his case review) be there for the rest of his life! How do I deal with that, continue to move forward, make him feel like his potential is limitless?  Of all the moments us as parents wish we could put our children in bubbles to live out the rest of their life in complete safety...this is #1!  

I am asking everyone who reads this update to close their eyes, and think of their first experience with BHS.  Think of that moment with their child, think of that first moment with doctors, think of that moment when you try to figure out what to do next, and how to move forward.  Remember your feelings of loss, of fear, of anger, of despair.  Lets take a moment and make an effort to help others through this time.  Lets take a moment to reflect, and be thankful that we got as far as we did.  Now, lets take that moment and use it to help others!  Lets do what we can, so the next parent that leaves the ER with their child and this diagnosis, doesn't have to go through the same emotional roller coaster we did.  I ask every one of you to please, post the link to this blog or the website www.bhsawareness.com to your facebook, twitter, linkedin, instagram, Google+.  Email friends, family, loved ones, co-workers.  Give them the advantage, we all wish we had when we first experienced BHS.

Thank you for your continued support and patronage!

If your child was diagnosed with BHS, please look to the following links for information and support!

www.bhsawareness.com

On Facebook? join the group "Parents of Breath Holders".