Friday, November 1, 2013

Epilepsy Awareness Month Starts TODAY!

This Month You Will See:

Facts About Epilepsy

Guest Bloggers

A Vlog EVERY Day (youtube.com/user/sevenswansaswimming)

Other YouTubers Raising Awareness Along With US

Purple, Purple, AND MORE PURPLE

And Maybe, Just Maybe A Give-Away TOO!!  

So Stay Tuned!

Follow us on Facebook.com/Avacake, YouTube, Instagram (SevenSwansTogether), Twitter (viiswans), and you can even follow this blog on BlogLovin!  

Happy Epilepsy Awareness Month!

HopeLink Halloween, Just Where We Were Supposed To Be

Does it ever just blow you away to know that God can speak to you through anything?  In my journey with God I have been on the straight and narrow and the dark and winding.  I have gone through periods of obedience and testing, rebellion and regret, and blessings and silence.  Yet, even in the silence....when I do not feel or hear His voice...I know that He is here through the hands and hearts of others.

Several years ago I went through a season where I felt that I was not supposed to participate in Halloween.  I do not know if it was a time when God was asking me to give something up or if I felt morally opposed to it because of the teachings and opinions that I was surrounding myself with.  What I do know is that it was an issue that I struggled with for a few years.
Fluttershy, Sherlock Holmes, Pinkie Pie, Spike (also from My Little Ponies), and Rarity

Eventually, it was through the eyes of my children, the heart of my oldest son, and a whole lot of prayer and self-study, that I found the Love of Christ can reach you, teach you, and use you, anywhere.  By participating in trick or treat I do not feel that it is wrong for my family.  (That is not to say that if you do think it is wrong for you and your family, that I am judging you or think that you are wrong.  I feel that God teaches according to our individuality.  Maybe He is not done with me on this issue.  And yet, many of my friends and family would not participate in the festivities of this annual event.  But last night, I was loved on and reminded in such awesome ways, that God is always with us.

Three years ago I started going to a support group meeting every month for moms of children who have rare, undiagnosed, or chronic medical conditions.  This support group has been my foundation of sanity through the love of people while we are living in Oklahoma.  It is called Hope Link and it is where I have met some of the greatest friends and moms that I will ever know.  And it just so happens that every year one of the founders of this amazing blessing, hosts a Halloween dinner party and trick or treating "parade."

I say parade because it is awesome to be able to walk around a neighborhood with other moms (who happen to be some of your very best friends in the whole world) whom have children in wheel chairs, on Oxygen, in helmets, using walkers, or drawing attention in some form that is not related to their costume.  We are a group that have laughed together, cried together, welcomed babies, and celebrated lives that are no longer on this earth.

And last night, when I had my first trick-or-treat experience where Gracie was in her chair the entire time.  When I was learning how to navigate this thing without injuring someone else.  When I was in fear of turning a corner that might lead me to another house with a strobe light that we would cause us to quickly re-calculate our route.  I had the hugs, smiles, and encouragement from moms who get it.  When Gracie had her seizures the drama that can sometimes descend upon us in public wasn't even a possibility because most of the moms in the group deal with seizures on a regular basis too.

And when I had to take Avagrace to the bathroom I saw this sign on my friends sink:  "He does not fear bad news, nor live in dread of what may happen.  For he is settled in his mind that JEHOVAH will take care of him."  Psalm 112.7

And I knew that I was right where God wanted me to be.  And you know what?  My kids knew it too. Not one, but two of them said "This is the BEST Halloween that I have ever had."  The other three said something very similar.

Wednesday, October 30, 2013

The Calm After the Storm, Isn't Always Calm...aka My Story of Anxiety/Depression Etc...

Think about it.  The calm after the storm is usually when the realization of what the storm has done hits you smack between the eyes.  Then the work begins.  The clean up, the readjustment to life, the moment where you say "this is my life now-post storm-and I am going to keep going, stronger!"

But it is also the moments where you see all that has happened and you have a plethora of emotions flooding your run-down self.  Emotions are good, but there is always the possibility of "too much of a good thing."

This is not something that I have ever publicly shared about.  Considering that I feel called to share my life with complete strangers, it is kind of shocking that I haven't "gone there, yet."  To people who do not like sharing all of their bizzz-ness, they will think that I am a nut-bunny.  But driving home from my doctors appointment today, I heard a still small voice saying "this is part of the life that you live, this is part of you being a mom with special needs kiddos, you can do it."  And yes, the last part-the "you can do it" was said in the voice of Adam Sandler, lol.

That still small voice is not schizophrenia, even though the doctors office that I was leaving was a psychiatrist.  Some may call that voice "a conscious".  Some "a muse".  But I know that the still small voice that I hear is a gift from my Father in Heaven.  I call it the Holy Spirit.

Because, you see, there is nothing and nobody else, that could convince me to share this topic with you or anyone for that matter.  I am a wimp in many ways and talking about my struggles would definitely be my fear scenario if I were a character in "Divergent" by Veronica Roth.  See how long it is taking me to get to the point!!!

I have struggled with anxiety my entire life.  I have also had bouts of depression that seem to come when I have had just about enough of the anxiety and my life seems rather glum or out of control.  I had my first nervous breakdown at the ripe old age of 17.  And by nervous breakdown, I mean a literal breakdown.  Thankfully, I had a very good friend, an awesome mom, and a loving older sister who helped me to make the decision to spend some time in the hospital to work through some of what was happening in my life.  It was during this time that I realized my passions, what made me tick, what I needed to take proper care of myself, and that I am stronger and smarter than I ever gave myself credit for.  It was also where I learned that being sensitive, emotional, and empathetic are not a weakness.  In my opinion I think that they are a super power, a gift, and a great responsibility.

After I had my first child my mom and sister came to the rescue again when they realized that after about two weeks I was white as a ghost and although wildly happy I was both anemic and dealing with the most anxiety I had ever had.  I found it hard to even walk around the house because I was afraid that I would trip and fall thus hurting my new precious baby.  I went to the doctor, changed my diet (increasing iron), and also tried anxiety meds.  This was the second time I was on medication and I took it for a while and then stopped because I found that my copping mechanisms worked so much better than the medications that seemed to give me horrible side effects.  I loved art, walking, music, dancing, reading, and I loved to pray.  I also had an amazing support system through my home church and women's Bible study that my friend April hosted at her house every week.

Life carried on and my husband joined the Air Force.  We moved to Oklahoma and I was land locked and in a state that experienced Tornado's several times a year.  My family was back in Pennsylvania with mountains, trees, and normal human-safe temperatures (joke).  I had three babies aged 4 and under and was pregnant with our very unplanned fourth child whom I struggled to develop an attachment with.  This was crazy to me because I had graduated college with a degree in Behavioral Sciences and my major focus had always been social research, family studies, and attachment parenting (my minors were Religious studies, English, and Women's Studies/Ministry).  When she was born 6 weeks early and spent time in the NICU it made it that much worse.  Fortunately, my best friend told me that she was worried about me because she thought that I might have pre/post-partum depression and the light bulb went off.  Again, just realizing that I was struggling in this way and remaining active helped me to deal with the symptoms.  When my preemie was just a few months old (and before I started taking anything for depression or anxiety) we found out that we were pregnant with number five.  Ironically, he too was very unplanned.  We found out during this pregnancy that I have auto-immune disorders that caused the pre-term labor (I went into labor early with all of my kiddos but was able to stop it with the first three) and that it made it that it compromised the different birth control medications (and other medications too) that I used.  The good thing about this pregnancy was that it made the depression and anxiety go away and it stayed that way for several years.  Despite my last baby being born 8 weeks early and spending more time in the NICU, I had a very good few years without overwhelming anxiety.

But then life kind of took me on another down swing and Avagrace's seizures became real and constant.  Everything was happening so fast that I didn't even stop to think about how I or my husband were handling it.  Our focus everyday was on the kids, their safety, and their happiness.  The more seizures she had, the more nightmares and sleepless nights I had.  The more doctors appointments and hospital stays she had, the more anxiety, bad eating habits, and lack of coping mechanisms I had.  The more hectic our lives became, the more reclusive I became.  It is hard to visit friends, go on dates, or even pick up the phone to call someone when you are; giving oxygen, taking care of seizures, dosing medicine, picking up medicine, calling doctors, fighting with insurance, visiting doctors, going to therapies, and taking care of the typical stuff with all of your other kids.  Add on top of that three moves in six years and we have a house that is so disorganized that Niecy Nash would have to do a multi-part episode just to help us get squared away!

But, it wasn't until the beginning of 2013 when some other very personal stuff, that I am still not ready to talk about, hit the fan so to speak.  And it was just one thing too many and I realized that darn it.  I needed to go to a shrink.  I needed to try the medication route.  I needed to be able to sleep.  I needed to be ok with asking for help.  But most importantly I needed to be ok with admitting that I do not have it all together.  That this life is hard.  And that I am not a bad mom for saying these things.

So here are some things that I firmly believe:

As a person or as a mom you do not always have to have it all together.

It is ok to tell your kids that you are having a hard time, they will learn how to talk about their difficulties and how to deal with healing and growth by your example.

Strength comes in admitting your struggles, not in covering them up or pretending like you don't have them.

And if you made it this far and are wondering what is the point of this blog is let me sum it up...(maybe I should have done that in the beginning?)  Sure, the storm is a time to buckle down and hold on but it is ok to not be calm after the storm.  Healing from the storm is sometimes the most challenging part.

Tuesday, October 29, 2013

The new normal...and all things to consider!

So the last two blogs have brought me to this.  And this is going to be one of the hardest posts that I have posted yet.  You see I am a planner, a list maker, a do-er.  I enjoy order and method and cleanliness and beauty.  Yet in trying to handle five kids, seizures every single day, the military life, our family on the other side of the continent, and buying our first house that was worse than a lemon.....well...it has been quite the adventure.

Avagrace is going to have seizures.  She has used nearly all of the FDA approved Anti-Epileptic Drugs (AED's) and has not had relief.  We removed the VNS so that we can do whatever it takes to restart her heart if she has heart failure during a seizure again in the future.  And now we weigh our options on other types of surgeries.

As far as removing a portion of her brain, well we are still not at that point....not to talk about it, not to do anything more than listen to doctors opinions and pray.

But the hear and now consist of several things.  We must figure out how to make our house ADA accessible aka wheelchair accessible with at least uniform floors (think vinyl flooring with squishy rug mats under them so that they are able to be maneuvered on while she is in her chair but are soft and safe  when she falls).

The thought of making our home accessible is daunting and makes me want to cry.


Avacake also really needs a new helmet.

Then, there is the problem of bathing.  You see our bathtub does not fit her special bath chair and so we need to finish redoing our downstairs bathroom but we are very VERY bad at home repair/remodel!  And are even worse at magic-ing the needed funding for said project to be completed.


The next major thing that we need to consider is a second vehicle that can not only transport our entire family but can also fit the oxygen bottles, the compressor, the suction machine, her chair, etc.  And to be able to have it handy cap accessible would be the best option because the chair could be her chair in the car.  That way when she seizes she is already in the proper position, and it will make seizure first aid that much easier and that much safer to perform.

The last thing that our family is in serious discussion and prayer over is how we can divide the children so that I can live in Colorado with Avagrace so that she can have a chance at the miracle drug of medical MMJ which has saved so many kids with disorders like my daughters.  With five kids and my husband active duty Air Force, he would have to stay here working at the base he is stationed at and I would have to take Avagrace to CO.  We would need to figure out how his one income can stretch to two houses and if it will even be worth it for us, because what if we divide our houses and then we do not even have success on the therapies there.

So this is what is floating around in my head as I am supposed to be sleeping tonight.  I wish that I had a fairy godmother that could come and love on me a bit.  This mama needs a Titus 2, or several...  But I am sure that I am one of a million moms of special kids that feel this way.

My babies are sleeping peacefully and for that I am so very thankful!

Monday, October 28, 2013

PHASE 2 for Avacakes Updated Seizure Plan


Post surgery Avacake has to rely heavily on her chair for the next month.  She is still seizing at least a couple hundred times per week and we are only starting the new medication tomorrow.  It will be a fourth line of treatment again.  We always try to avoid a fourth line.  When you are on more than three Anti-Epileptic Drugs your chances of being one of the patients that succumb to epilepsy via SUDEP (sudden unexplained death in epilepsy patients) go up exponentially.  We always try to avoid this.  However, Avagrace's absance seizures are back with a vengeance.  I mean she literally has them several times an hour and it is so frustrating for her.  

Imagine that every day you walk around with a remote control that someone with you holds.  On it is a pause button that will not only silence and freeze you to the world that is actively going on, but it will be un announced and it will last for a few seconds to a few minutes.  Approximately 8-30 times an hour (or more).  That is what life is like for Avacake.  

Mix that in with moments where portions of her body do their own thing.  Like her hand clamping into a shadow duck puppet shape and not releasing even if her other hand trys to help it.  Or when her lips cheeks, neck muscles,chin, and side or sides of her neck start to tremble as if she were shivering.  Yet it is only these areas, nowhere else.  Then there are those times that her legs or arms will stiffen straight out and be immovable.  

Or one of the worst type of seizrue for Avagrace (because it is painful and she is conscious during its entirety) is when she has what is called "abdominal epilepsy."  This is also the hardest one for emergency techs, nurses, and some doctors to understand or believe as seizure activity.  It is basically when her brain is seizing specifically in her stomach/digestive tract area of the brain.  It causes extreme pain as her muscles are flexing and therefore squeezing as tight as possible.  This is one of her most frequent seizure types and is in fact one that can go status and has caused cardiac arrest.  If we administer rescue meds right away we can usually stop it effectively.  However, sometimes it is hard to tell if it is a seizure or a normal tummy ache until it really gets going and causes such intense pain that Avagrace is doubled over and unable to focus on anything else.   

There is also seizures (gelastic) that Miss Avacake has that make her burst into tears or have uncontrollable laughter for no apparent reason.  She also has ones that appear as if her body is hiccuping (myoclonic) or her arms just jump into the air.  She has these every single night without fail.  Another type that Avacake is aware is when her eyes move back and forth very quickly and yet she is completely conscious and aware of it.  She will say that she "just had an eye seizure."  These are rather creepy.  

With over 40 types of seizures and Avagrace having so many different and rare seizure types I could go on.  If you are interested in knowing more just leave a comment down below.  But for the purpose of today's blog I am going to get back to the topic at hand.  :-)

When we took the Vagus Nerve Stimulator out it was for two primary reasons and many secondary ones.  We knew that this would not have any affect in decreasing seizures and that it would likely increase them (because even though the VNS caused a lot of negative reactions in Avagrace it did help in many ways).  So for now we try the last few FDA approved anti-epileptic drugs (we have tried so many and so many combinations of them that we are very limited on our options at this point).  We pray that this country will make the miracles in Colorado available to the rest of its citizens (google charlottes web,  or medical MMJ in Colorado for children with epilepsy).  We plan for the possibility of dividing our children between Brendan and I so that he can stay here where the Air Force has stationed him and I can move to Colorado with Avagrace to try Medical Marijuana.  We consider allowing surgeons to remove a portion of our daughters brain.  We share our story in hopes of educating the public so that epilepsy will receive more funding and more awareness so that one day a cure can be found.  And of course, we Pray!