November is National Caregiver Month!!

November is National Caregiver Month.  So for this post I want to focus on the impact this condition has had on Brayden's older brothers.  If your child with IBHS has older or younger siblings, you may find that you relate to some of this.

Anxiety

It is sad to think that some one so young could suffer anxiety, but that happened to Brayden's oldest brother Ethan.  Prior to Brayden's spells becoming severe, and seizures being a part of our day, Ethan was so carefree.  Untainted.  He really had not a care in the world.  He was always happy, on the go, his sense of humor was incredible!  He was a goofball!  Ethan was 8 years old when Brayden had his first seizure.  The change in Ethan wasn't noticeable at first.  I think it was more of a gradual change as things started to spiral with Brayden's condition.  Sadly, I didn't notice it right away, and didn't make the connection until time had passed.

Ethan stopped sleeping over friends houses, something he enjoyed doing all the time, from the time he was 4 years old.  He would get stomach aches when it came to going out without the whole family.  His personality changed.  He wasn't carefree anymore.  He seemed to have something on his mind, but I couldn't understand what.  That sense of humor that so many enjoyed was lost.  

Ethan was invited to a sleepover at a friends house, and he declined.  He hadn't been to a sleepover in a year or so.  I sat him down and asked him what was going on, why he all of a sudden wasn't sleeping over friends houses.  He said he just didn't feel like it, he liked being home.  The conversation seemed to be going nowhere for some time, but I kept prying and trying to get something out of him, because him not feeling like it, was just not enough. It wasn't him.  Finally, it came out.  He broke down and cried, and told me he was afraid that something bad would happen if he wasn't here.  I didn't understand, and asked what he was talking about, and he said, with Brayden.  My heart sank so low, I felt the thud when it hit the floor.  It had never occurred to me that this was affecting him.  Honestly, to this day I can't remember Ethan ever being part of the crowd, when Brayden had an episode.  So I couldn't imagine, something he never witnessed affecting him like this. The truth is, Ethan wasn't around to see anything happen, he told me he didn't want to see it, so if Brayden got upset, he would leave the area, so he didn't have to see it.  

Ethan is now 12, and honestly, things haven't changed much, despite my reassuring him that Brayden would always be ok.  That nothing bad would happen to him.  Ethan goes outside and hangs out with his friends, but that's where it ends, he still doesn't sleep away at night, unless Brayden is sleeping over with him, for instance at an aunt or uncles house.  He is very careful with Brayden, and protective of him.  He makes sure no one else is being too rough with him, and he has formed a bond with him that is very different than the bond he has with my middle son, Ryan.  To this day Ethan has never seen a spell.  I've talked about them with him, to try to ease his fears of something bad happening, by giving him an understanding of what happens, and why and how it happens (to the best of my knowledge of course), but this condition has already made such a deep mark on him that despite the efforts, he remains scarred.

Growing Up Too Fast

We all know how suffering medical illness, or serious medical conditions can cause the patient to grow up too fast.  Have an understanding of things that no child should have an understanding of, such as hospitals, procedures for tests, taking daily meds, etc.  But what about the siblings?

Brayden had his first seizure when he was one, which made his older brother Ryan, only two.  That first seizure I was the biggest mess, as I thought I was losing him.  I was frantically running through my house looking for a phone to call 911, while holding his lifeless body in my arms.  Ryan being two years old, and not understanding of the situation kept repeating (in his baby babble) "ba, ba, bo Bayen" (translation: bad, bad, boy Brayden).  After learning that this could very well happen again, I knew I had to get a handle on myself.  At least while the spells were happening.  Not just for Brayden's sake, but for Ryan's sake too.  I didn't want him to see me fall apart, as he may learn to fall apart too.  It wasn't easy.  It was so hard, I wasn't always successful.  As the spells became worse, the seizures became more severe.  They changed, and looked so much more horrifying to me.  The frequency at which they were happening, was draining.  Eventually, I learned to stay calm during the spell, and when I knew he was ok, walk into another room, and silently cry, until I could let a good cry out in the shower, or when everyone was asleep.  What happened with Ryan, was much more incredible.  When Brayden had his next severe spell, Ryan sat down next to him, and rubbed his back, and kissed his head.  This became the routine for Ryan.  He would run from wherever he was, sit down next to Brayden and rub his back and kiss his head.  "Otay, Bayen" is what he would say...(translation:  it's okay, Brayden).  Ryan was 2.  He became a caregiver at the age of 2!  

While this is a proud mom moment for me, that I have such an amazingly compassionate son, it also saddens me to think how quickly Ryan grew up because of this condition.  From such a young innocent age, he witnessed the most horrifying thing happen to his little brother repeatedly day after day.  He grew up.  He may not have been talking much, but he understood that his little brother was suffering, and that he needed him.  He understood what Brayden's shrill cry could lead to and would run to him ready to comfort.  It is not fair.  It's not fair that he had to be exposed to such sadness at such a young age.  That he had to learn to be a caregiver at such a young age.  Yes, I am proud of my Ryan, I just wish he didn't have to be exposed to this.

Sibling Caregivers

During National Caregiver Month, I think a lot of attention goes to the professional caregivers, the parents, doctors, nurses etc.  Siblings are the unsung heroes in this journey.  They often go unrecognized despite playing such a major daily roll in the care of a child with a medical illness or medical condition.  They suffer along side their brother or sister, and care for them with a strength, and love that is incredible.  They are their support, their cheerleaders, through testing, med trials, and hospital stays.  They are the best distraction from the (let's face it) crap the patient has to go through.  They are a blessing to the family, reminding us that this condition is only just a part of our life, not our whole life.  I am so proud of my boys for how they have grown together through this.  They have compassion for others, they give of themselves to those in need, and they genuinely love, and care about each other.  They are my heroes!

Happy National Caregiver Month!! Remember to thank the caregivers in your life!!

~Jennifer

Kindergarten...The Good, The Bad, And The Funny!

So, Brayden has been in Kindergarten for a month now, and I figured, now is as good a time as any for an update on my little man!  I was very nervous about this transition.  Not so much the transition of being in school vs being homeschooled with me, but whether or not he would have spells, how they would be handled, etc.  Its had its ups and downs, as with anything, but we are working on adapting.  So here we go!!

The Good!

Brayden has adjusted to school life so well!  He loves going to school, loves his teacher and his aid.  Is making friends, and doing so well academically!  Hearing from his teachers what a sweetheart he is, isn't shocking to me, but so good to hear!  I credit all the visits to the school for orientations, meetings etc, for Brayden not having any separation anxiety from the first day of school on.  

More good news!  Brayden hasn't had one spell at school!  This is so wonderful to me, because my biggest fear was him suffering spells, and me not being right there with him, helping him get through it.  The thought of that was really breaking my heart before school started, so it thrills me that he hasn't suffered in school.

The Bad :(

I really don't want to spend too much time, on "the bad", however, in the interest of full disclosure, I think its important to list.  Since Brayden has started school, he has not had any episodes in school, which is great.  However, the amount of spells he's had outside of school, has increased.  In addition, I have been noticing abnormal events in his sleep.  Some I can tell are spells, which he used to suffer in his sleep when he was younger, others I can't tell if they are spells or not.  For those events which I can't tell, I find him tonic (stiff, and arched), there is no noticeable trigger, or cry, prior to this.  After the tonic spell dissipates, he begins experiencing myoclonic jerking/twitching.  He is not aware or noticeably awake during any of this.  Since this happens in the middle of the night, I am not aware of any color change in his skin.  On the mornings following these events, he is out of it, and miserable, and tends to have spells, or close calls before school, which makes it difficult for me to drop him off, not knowing what the day will bring for him.  The other dilemma that this presents for me, is whether or not I should call the doctor.  Here's why.  The last thing we were told, was that Brayden's seizures were BHS related.  However, with a past abnormal EEG, he is at a higher risk of developing a seizure disorder.  So, his neurologist told me it was not necessary to follow up unless I started noticing seizures outside of his BHS.  I'm hesitant because I'm not sure if these are actual seizures, as his eyes are not open during these events.  I'm also hesitant because now that he is older, I worry that putting him through more of these tests, and finding out they weren't necessary, will cause him undue stress and upset.  He's already been through so much, and it breaks my heart to think I have to make a decision to put him through more or not.

The Funny :)

The one thing I can say about my little man is that nothing stops him from enjoying life!  He is a big sweetheart, and incredibly entertaining!  One thing I have learned about him since starting school, is that he is also quite the ladies man!  I will start by sharing a conversation we had on the way home from school...

               Brayden:  mom, can Lilly com over sometime

               Me:  Sure, that's fine

               Brayden:  Lilly's a girl

               Me:  Yes, I can tell by her name, its a very pretty name

               Brayden:  She's a girl, and she's my friend

               Me:  (thinking to myself) Hmmm, are you trying to tell me something?

And that's where it started, lol!  A couple days after that, his aid told me that she thinks he has a little girlfriend, and told me how he looks after her, and when they go to lunch, he stops to see where she sits, so he can sit next to her.  This past Wednesday, I chaperoned a school trip of his, and I got to meet this little girl as she was in my group, and I must say, I can see why Brayden is her friend because she is such a sweetheart as well!  On the bus ride back to school, his teacher told me not to forget her when the wedding is being planned since that is where it all started, lol! 

Thanks for reading!  As always you can like my Facebook page, and follow me on twitter, by clicking on the links at the right!

~Jennifer

IBHSiversary

My Strong, Brave Little Man 

Hard to believe that it has been this long, but today marks four years since Brayden had his first seizure, and lost consciousness due to IBHS.  It doesn't matter how much time has passed, the events of that day, holding his lifeless little body in my arms, will forever be ingrained in my memory.  The fear, the agony and the pain of thinking I might lose my son for the second time in his short 14 months of life haunts me.  Despite the time that has passed, and the improvements in his condition, every time he suffers a spell, those emotions feel just as raw.  However, I have learned a few things in these 4 years, and have improved in some areas.  Here's a few...







"Some times the people around you won't understand your journey.  They don't need to, it's not for them" ~Unknown
I'm sure some people are tired of hearing about it, some may even feel like I should "get over it" because "he's fine".  I try to forgive their ignorance.  They have not known what I have.  Felt the emotions that I have.  Watched helplessly as some one they care about, so much more than they could ever care about themselves, suffers.  I'm not going to lie, it hurts me, but I know, I can't let it consume me.  In some ways I appreciate their ignorance, I wish I never had to know these things, or feel these emotions, and I would never wish this on anyone.

"It Doesn't Get Easier, you just get STRONGER" ~www.dailyquotes.com
Over the years, I have talked to so many parents, new to IBHS.  Like me, all they want to hear, is that it gets easier.  I always tried to avoid that phrase, its deceiving.  When I caught myself saying those words, I always try to elaborate.  I would tell them that while it never gets easier to watch this happen to your child, it gets easier for you to control your emotions until you have gotten your child through the spell, and recovery.  Just the other day I found this quote on Pintrest, and it really hit home.  These are the perfect words to describe how you change as you care for your child.  It doesn't get easier, but you do get stronger in so many ways.  Your will becomes stronger as you find ways to keep moving forward, to suppress your emotions and feelings until the quiet of the night or a hot shower, when you can let them flow freely.  Your voice becomes stronger as you become an advocate for your child.  Your knowledge becomes stronger, as you research more than most doctors.  Your ability to support others in rough times becomes stronger, because you have known rough times.  The strength of a parent caring for a sick child, is superhuman, and not to ever be underestimated.

"Just keep swimming"~ Dory, Finding Nemo
Special thanks to Dory from Finding Nemo for this brilliant quote!!  I repeat this to myself often when Brayden goes through rough times, and I am heartbroken by this condition still being present at 5 yrs old.  This is not permanent.  Following each rough patch, we have good patches too, its just a matter of getting through the rough times.  They won't last forever, even if the condition does.  Reminding myself of this fact, has helped a lot.  It keeps me going, when I feel I can't go anymore.

One final note on this IBHSiversary, be patient and be kind.  Not just with others, but with yourself.  Give yourself time to adjust, allow for mistakes, and don't forget to pamper yourself from time to time, it will refresh you and help you to continue on.  Raise awareness.  The more you tell your story, the more this condition will become known for what it is.  You may not change every mind, but if you change one, that is a success story!!!

Thank you for sharing in or journey!

~Jennifer

I Am Not Special...

Well, I just got off the phone with the school psychologist at the Kindergarten Academy.  Wednesday morning at 8:30 am we will meet to complete the details of Brayden's 504 plan.

So thankful for this school and the fact that they are taking this condition seriously, and working hard to ensure Brayden's safety and well being this year.  However, whenever I hear myself say "504 plan" referring to my son, it makes me sad, and a knot forms in my stomach.  In my head this was never going to last this long.  It was supposed to be over by now, he was supposed to be fine when school started.

As a parent it is so hard to hand your child's medical care over to others, I was supposed to be spared this experience and these feelings...or so I thought.  I honestly don't know what made me think I was so special, that I wouldn't have to go through this, or that my children wouldn't suffer from a condition that would require special accommodations, just to go to school and do things that others don't even have to think about.

I know that we will get through this, I know it will make us stronger, and I know that there is a plan and a purpose for us, even if I don't see it right now.  It doesn't make it any easier, but I keep reminding myself of this.  I'm hoping it sinks in before the first day, when I walk him to school, and let go of his hand, let go of him, so that he can have the same experiences his brothers did before him. 

~ Jennifer

www.BHSAwareness.com

Involuntary Breath Holding Spells Awareness on Facebook

Preparing Myself For Kindergarten

You're eyes are not playing tricks on you.  This post is all about me, preparing myself for Brayden to start kindergarten.  There are tons of articles, posts, and studies on what to do to prepare your kids for kindergarten.  What to do to prepare yourself to send your [perfectly healthy] 5 year old to kindergarten.  How to deal with the "empty nest" for the day.  How to handle your child's separation anxiety on the first day.  There are no articles on how to prepare yourself to send your 5 year old, suffering from IBHS, to kindergarten.  No, today I won't be touching on any of those typical subjects.  Today, I am simply going to touch on the difficulties a parent who has cared for their child with a medical condition their whole life, will face as the first day of kindergarten draws nearer.  

Sending my kids off to kindergarten has been a milestone I have thought about since the day I brought them home from the hospital.  I know that's odd to think so far ahead.  But I clearly remember walking through my front door with my first child and immediately saying to my husband, "can you believe in just 5 years we will be registering him for kindergarten?!"  And while I've had those typical mom thoughts of wanting to turn back time, and keep them young, sending my kids to school, never stirred up such feelings of anxiety and dread, as they do right now.  

The most obvious problem, and maybe other parents caring for kids with medical issues can relate to this.  Separation anxiety.  Yes, I am attached to my son.  Attached in ways, I'm not to his older brothers, who have not faced similarly terrifying health concerns.  It's not that I can't leave his side.  I've been food shopping without him, ran errands without him, been to my own doctor appointments without him.  No problem.  But we're talking full day kindergarten here.  6 hours straight, away from him with high potential for injury, and pain induced episodes.  There's the lunch room, recess, gym class, free time in the classroom, not to mention just tripping and falling. Its hard when the world around them is their worst enemy.  It's hard to let go and hand his care over to other people, when I have been the one doing it all these years.  It's hard knowing that if something should happen, I will not be the one comforting him through spells and seizures, I will not be the first person he sees when he regains consciousness.  This tears me apart.  

Then my mind starts to spiral.  What if he loses trust in me because I'm not there?  What if he feels I left him when he needed me?  I know when I say these things out loud, or type them in this post it sounds ridiculous.  I also know that if another parent came to me upset over these same things, I would tell them that after all the years they have been by their child's side, through the doctor appointments, the testing, and the spells, the value of that can not be taken away by simply going to kidnergarten.  Nothing takes away from all the love and care they provided for their child.  The bond that formed through all of that, is unbreakable.  And I truly believe that.  So why isn't that enough to get me through these last few weeks of summer vacation leading up to that first day of kindergarten?

I've done what I can to rectify these feelings.  I've met with the principal & staff, and been in contact with the principal throughout the summer in regards to Brayden's condition.  We've implemented an action plan if a spell should occur, they will have a 504 plan in place starting on the first day of school, with a para professional to shadow him throughout the day.  His classroom will be located right near the nurses office, it will be air conditioned.  His schedule is being planned to incorporate snacks and down time so as not to tire him out quickly, the list goes on including a plan for indoor recess on hot days.  The steps the school has taken to ensure his safety and well being are beyond anything I could have imagined.  So why is this still too hard?

Easy.  It's hard because he is my child.  It's hard because I am supposed to protect him.  It's hard because IBHS is not well known, or understood.  It's hard because I can't say, "Oh, here is this magic pill you can give him to ensure he won't struggle to breathe and have seizures while he's in your care".  There are so many reasons why this is hard for me.  All I ask is that its harder for me than it is for him.  Because, I can handle the stress and anxiety as long as I know, he doesn't have to suffer that on top of the IBHS.

~Jennifer

Time Can Do Many Things

Time Passes.  As time passes so much can change.  Your kids grow, and develop.  You change with them...or should I say, they change you?  You view the world differently, life differently.  Those things you thought were so important, aren't any longer.  One thing time did for us as it passed, was improve Brayden's condition.

Brayden turned 5 on July 14th.  Although involuntary breath holding spells are still part of our life, they aren't part of our daily life, as they used to be.  These spells still come and go in waves, and we are in a more active pattern right now, however, even this active pattern isn't as bad as our worst days.  

Prior to Christmas Eve 2014, Brayden was having one spell every 3 months.  That light at the end of the proverbial tunnel was getting brighter and brighter for us.  We relaxed around Brayden.  It was as if, we were all able to "catch our breath".  Beginning on Christmas Eve 2014, things started to pick up again.  He had a spell on Christmas Eve, again in the beginning of January, and in mid February.  March and April he had two spells each.  May he had 3 spells within 2 weeks, and in June he had 5 spells.  This month (July) he has had 4.  Now, if you've been following this blog, or have just read through this entire blog, you know...this is nothing compared to what he's been through.  I would still say that the condition has improved.  I would include that this is without a doubt the most unpredictable condition I have ever known.

July 14, 2010: Brayden had his first severe spell

Time Teaches.  When I think back to September 11, 2011, and Brayden's first severe spell since his birth...the fear, the confusion, the what ifs that followed our conversation with the doctor and a trip to the ER, the mounting concerns and unanswered questions.  I was a wreck.  Each time a spell hit, I couldn't control every emotion that swept through me.  I was outside myself watching this happen to my son, my heart.  He stopped breathing, turned blue or pale, his body became so stiff and arched, it looked like he would break in two.  Seizures overcame him and he would lose consciousness.  To a parent watching this suffering of her child, it looks like death.  Experiencing this several times a day, can break you.  It broke me.  I'm not ashamed to admit it.  I was broken.  And the pieces were so shattered and tiny, it was inconceivable that I could ever be put back together.  

But time teaches.  And what time taught me was that all the fear, and worry in the world, won't change anything, but it will drive you to make things better.  Time taught me that no matter how many degrees the doctor had that told me I couldn't help my son, the one thing they didn't learn in med school was that the will of a mother is far superior than the knowledge of a doctor.  Time also taught me to trust...in myself, my abilities as a mom, my capabilities as a person.  For so long I doubted that the one gift I had, the unconditional, undying love of a mom for her child, was enough to help him through these terrifying episodes.  What time taught me, and showed me, was that love is more powerful, more healing than any drug.  I was there for Brayden, I comforted him during spells, I cuddled and loved him after the spells, I protected him from situations that were known to cause his spells.  He trusts me, and he feels that love, and that feels great as a mom.  Time taught me how to calm myself during these spells, so I could better comfort my son.  It taught me that even in my weakest moments, I am strong.  It taught me that crying behind closed doors, and in a hot shower were not signs of weakness, despite how weak it made me feel.  It taught me that the one thing that can break you down to your very core, can also build you back up much stronger than you could ever imagine.

July 14, 2015: He's my hero!

Time Can Do Many Things...Time Can NOT Heal All Wounds.  Time can heal many wounds, but not all of them.  Yes, I am calmer during spells.  Yes, I feel more confident in my abilities to help my son.  But there are many things that have changed in me because of this condition, that have not healed yet.  I don't trust anything I can't control.  For example, most literature on IBHS suggests that some kids "outgrow" this condition by age 4, most kids by age 8, and a small percentage will have these episodes into adulthood (which is later diagnosed as expiratory apnea).  I can no longer let myself believe that Brayden will "outgrow" this.  So many times, I felt we were at the end.  The improvements were and still are monumental considering how bad it was, however, for each step forward, we take several steps back.  This has been our pattern.  I can't let myself believe he will "outgrow" it, because, I can't take the hurt and disappointment when each set back proves to me that what I think I know, I know nothing about.

Time can't stop a mother from worrying.  Every mother worries about her children...its just how things work.  But the worry you have for your child when you feel that you are their protective bubble, and the consequences of you not being 10 steps ahead could lead to your child having a seizure and losing consciousness, is far different than the worries that you have for your healthier children.  When my 12 year old son leaves the house to walk to a friends house, I worry about all the horrible things that could happen in that short walk, but I don't feel the need to hover over him when he's at home.  With Brayden, the fear isn't just there if he's not with me.  It's there if he's not in my direct line of sight, even when we are at home.  I worry about the dangers of him climbing up the stairs backwards, as he likes to do.  I worry when he decides to be a daredevil and wants to jump off the 5th step.  I worry about him on the trampoline with his brothers, I worry about going on vacation and what the change in environment and routine might do, I worry about him not getting enough sleep, or when he loses his appetite, I worry, and worry, and worry.  Will all these worries change anything...improve anything...no...time taught me that.  But those worries have been instilled in me since day one, of this journey, and may never change.  However, I have learned to not let them hold Brayden back from being the little boy he is, and enjoying himself.  He jumps on the trampoline, and off the steps...walks up the steps backwards, climbs anything he can, and is the biggest daredevil.  I don't mind the suffering of worry (and gray hairs) if it means he's living his life.  I also, feel that this is a sign that this condition, has not scarred him in ways it could have, and I'm thankful for that.

Me & my buddy! Working to raise awareness and help support families
caring for children with IBHS.
"Strength In Every Breath"

In Conclusion.  Life can be difficult.  It throws curve balls.  The unexpected can happen to anyone.  No one is excluded from these things.  All you can do is learn from it,  change with it, be kind to yourself when you are faced with something far beyond what you could have imagined.  Allow yourself to "have a moment" without beating yourself up over it.   You will adjust, and you will move forward.  Set backs are inevitable, but so is progress.  Find support from those in a similar situation, because only they can truly "imagine" what you are going through.  Don't let the comments and judgments of others become part of your beliefs, they know nothing about the battle you are fighting everyday.  Don't expect anyone to understand what it's like to walk in your shoes, its unfair to them.  Don't isolate yourself, if you build too many walls, you will lose the people who can bring you out of those dark moments.  Finally, hope and faith are funny things.  They are the strongest tools to have, but so hard to keep sometimes.  Make sure you have people around who can help you in those moments when you feel hope & faith slipping away.  People who are going through a similar situation and have found a way to keep hope & faith above everything else and are willing to be there for you are the best friends you can find.  Do they have to live close...absolutely not!!  The people who have been there for me in my darkest moments and have lifted me up are scattered around the country and the world!!  "Present" doesn't necessarily mean close, its the people who have proven that they can be there for you in ways much more powerful than physical presence.  Those people are true gifts!

www,BHSAwareness.com

Follow me on Facebook at Involuntary Breath Holding Spells Awareness

Email me at InvoluntaryBHSAwareness@aol.com

Facebook Support Groups:

Parents Of Breath Holders

Parents that have children that suffer from Breath Holding Spells

Breath Holding Spells Awareness (Canada Chapter of IBHS)

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!!