Monday, December 23, 2013

Thankfulness, Life Is Now!

Ecclesiastes tells us that “the day you die is better than the day you are born” (Eccles. 7:1).   But you know, reading this and accepting it is worlds away from reading this and believing it.  To let God's word sink in, simmer, steep, and transform you is something that, I am learning, can only come from both experience and desire to love.  It cannot be achieved one without the other.  Just as the Bible tells us that “Sorrow is better than laughter, for sadness has a refining influence on us.” (Eccles. 7:3)    No matter how much I want to understand a life experience of another so that I can be a better friend, I will never truly get it if I have not gone through it.  It is exactly why, I believe, Jesus walked this earth.  To show us the way.  To know better the human experience, and to relate better with his children.  He wanted to love us even more infinitely than He already did, so he gave us His Son, so that He could live among us and intercede on our behalf.  To love my friends and be a support to them I can read their blogs and talk to them on the phone, I can hold them as they cry and I can listen as they share.  But no amount of love will actually put me in their shoes unless I too have been where they are.  And for that I am truly grateful that I have had so many trials in my life.  It is through these trials that I have been given the charge to share my experiences, my testimony if you will, on what God is doing in my life.

It is because of these trials that I am able to be who God wants me to be.

Today was a day of importance in my life and the life of my children for several reasons.  Today was an anniversary, it was a day of mourning and celebration, and it was a day of learning and grace.

You see one year ago today a very special little girl went to heaven to be with Jesus.  Her name is Ellie-Kate.  I had the pleasure of knowing her for two years of her life.  Yet in those two years she welcomed me into a community so rich in love that without it I would not be who I am today.  Her mama is a co-founder of the support group that I am part of called HopeLink.  HopeLink is a group that was created for mothers who have children with rare or undiagnosed medical conditions.  It was created to provide a place of acceptance, fellowship, encouragement, wisdom, and love.  Through HopeLink I have met many very special children, some really awe-inspiring moms, and have been given a safety net to get me through some of the loneliest times of my life.  Today was the first anniversary of Ellie-Kate's new birth into her heavenly body with Jesus.

Today was also the day that my best friend whom I consider my sister had to lay her precious newborn to rest.  Gabriella Faith lived for 72 minutes and yet taught countless people what faith really means.  In a nation where the lives of unborn babies are not protected Gabriella's life could have been made meaningless or called a mistake or a defect.  She could have been aborted at any point of her time in her mothers womb.  However, her parents chose to respect her life and allow her to live as long as she was able.  They gave birth to her knowing that exencephaly meant that she would not have a skull covering the top portion of her head.  This meant that the amniotic fluid would cause her brain to deteriorate.  She would have to be born by c-section if there was going to be any chance of surviving the birthing process and so her mother, who has given birth naturally to three boys, opted for the c-section so that she could protect her daughter as much as she possibly could.  I was blessed to be there when Gabriella was born on December 15th 2013 and when she died 72 minutes later.  And I will forever be grateful for getting to see such a peaceful, beautiful child enter this world and make such a gigantic impact reaching over 200,000 people in the few hours that she was born.  She gave her organs for research and her life to raise awareness and to show God's love and sovereignty!  Today was a day to mourn and celebrate her life.

Today was also the first day that I would be hurt by the words of one of my children.  I am not going to name names because I do not want to hurt the feelings of a person that I love with all of my being, but the story must be shared and the child whom I am speaking of wants me to share this too.  You see, this child is now on a mission to teach his friends what they learned from this experience.  So for ease I will write "he" but that is not saying that it was my son or my daughter who shared this experience with me today.

While we were at Gabriella's wake my kids and my sister-friends kids were playing and loving on each other and naturally I wanted to get some pictures.  Some playful banter was exchanged with some of the older children and one of my own said "that's retarded" about something silly that someone else had done.  When the word came out of his mouth I had one of those moments like the mother in that dreadful Christmas Story movie.  My entire demeanor transformed as the ice of that word struck my heart.  "What did you say?"  Nothing, was his dismissive and yet shocked by my tone, reply.  "No, WHAT did you say?"  He then repeated what he had said and I asked him to leave the church dining hall and wait at the front of the church for us.  We were leaving anyway and I honestly couldn't talk to him until the shock had subsided a bit.

"How could one of my own children say that word"  "Does he not know what it means"  "Have I never told him this?"  "Isn't it obviously mean?" "Have I let him watch something or listen to something or read something that would flippantly use this word?"  All of the questions of self doubt came pouring out as I thought about how this child that loves others so much, say something that is so cruel….

When we got to the car it was obvious that we had never had this talk.  It isn't like I just sit down with my kids and say "here is a list of words that are despicable and you must never use them."  We asked him what he thought it meant, then we made an announcement to all the children that we never want to hear that word again.  I figured that with this visceral of a reaction I should probably make it a "commandment" so to speak.  We stopped to get gas and used that time to talk to him out of the ear shot of other kiddos.  We explained that several years ago Avagrace had gotten so bad from her constant seizure activity that she was unable to feed herself, talk, or walk without assistance and help moving her legs.  We explained that we got the diagnosis of mental retardation and how just hearing that word being used flippantly encourages the world to think of people who are differently abled or special needs-as less than, damaged, stunted, slow, and so much more.  We reminded him of the time that Avagrace had to have shots twice a day.  He remembered.  We told him that those shots were a medicine called ACTH.  It was an experimental medicine but it worked for Avagrace at the time.  It healed portions of her brain and it brought her back to us.  But it didn't stop her seizures forever and it didn't fix everything.  Avagrace is still mildly mentally retarded.  However, just because she doesn't always know what we are talking about and just because she can't always think of the words she is trying to say…well it doesn't mean that she is any less awesome, smart, strong, or worthy of respect than anyone else.  With tears shed, genuine remorse, and explanations shared today was a day for learning and grace.

I received a message from a "friend" from high school on the day that Gabriella was born.  They told me that they were "un-friending" me because I was depressing and obsessed with talking about sick kids and death.  They said that I should stop seeking out all of the "freaks" and that I should stop sharing our story because people want to hear the good news, see the happy pictures, and strive for the "perfect" American dream.

While their words hurt and angered me at first (I am human and I am very protective of my loved ones) I honestly just felt really sorry for this person.  I thought of how rich I am and how blessed I have been because I have learned some of the greatest lessons in love and life by opening myself up and sharing our "wonderfully made life."  (A very fitting quote from the Bible and brought to my attention from my friend Ryan aka Ellie-Kate's mom).  To be a special needs mom is to throw all expectations, all lists, all plans out the window and to embrace life that is not familiar, is not taught, is not planned for, and never expected.  It is out of the ordinary.  It keeps you on your toes.  It hurts.  It heals.  But most importantly it helps you to be thankful for every moment that you have because life is now.  

Monday, November 18, 2013

Medical Results Are Just Opinions...

As you know, Avagrace and I have spent the last 7 days in the hospital under constant video and EEG monitoring.  During this time the parent stays by their child's side the entire time and is asked to push a button anytime seizure activity occurs.  They weaned her off of meds and evaluated her brain activity with meds, without meds, and then as they added meds again.  If the parent needs to go to the restroom or leave the room a child-life specialist, nurse, or another parent/adult who knows the child well enough to know what their seizures look like must be present.  The goal of this study is to see where the seizures are starting.  What the clinical (meaning outward signs of a seizure) look like on a diagnostic (EEG brain pattern) view.  Many times people will have seizures or abnormal brain activity and no clinical (outward signs or symptoms) will show up.  Or sometimes they will have clinical seizures (like Avagrace having one finger rapidly moving up and down in a super human pace) and the seizure is too deep within the brain to show up on the EEG.  If your child has seizures, this is the time you want them to present so that you can understand them better.  The one seizure we were hoping to catch, and did not, was one of her abdominal epilepsy seizures.  Fortunately, we have caught this type of seizure before but we wanted to see if there were any changes.

All in all the testing went very well.  We were fortunate enough to get a different kind of reading than we have in the past.  This reading showed that treating Avagraces epilepsy aggressively was to an advantage in many ways, but it also taught us that some of the medications that Avagrace was on, were actually making things worse.  You would think that it would be easy to tell once you start a medication if it is making things worse or better.  However, with neurological symptoms that is not always the case.  You see, there is usually a "honeymoon phase" when introducing a new epilepsy medication.  The brain is all lovey and accepting of the new control and then like a storm gaining strength it gains resistance to the medicine or gains strength from it.  It is a constant trial and error to make the right cocktail of Anti-Epileptic Drugs.  Ideally one medication will work, but usually with intractable cases such as Avagrace's it takes 2 or 3 or more. (Avagrace was on four and at one point in our journey, before I knew to advocate against so many drugs, she was on 6).  Going above three lines of medication is never the goal because with each added medication, the chances of SUDEP (sudden unexplained death in epilepsy patients) or the chance for status seizures (seizures that don't stop on their own or even after one or two doses of rescue medications) increases because your body because "immune" in a sense to the medications.

So, we went into the hospital off all meds.  THIS IS NEVER A GOOD IDEA because it can cause shock and many other complications.  One of the doctors insisted that we stop cold turkey two days before the test.  Then when we got there the doctor on the floor freaked out (as we did prior) because of course her seizures were out of control and the likelihood of having status seizures was very high.  So she immediately started her on some of her meds and then slowly (the proper way) decreased meds until we were back to no meds.

In doing this we learned several things.  First we learned that treating Avagrace's disorder very aggressively 2009-2010 was VERY GOOD for her.  Her EEG from then, until now, is still so remarkably better that the doctors were constantly joking that I had brought the wrong kid to the hospital.  The second thing that we learned is that Avagrace is an over achiever in the sense that her brain is displaying two distinct abnormal brain wave patterns that are associated with two distinct forms of intractable epilepsy.  The doctors that were present were so baffled because they had never seen this before.  So they were more than happy to discuss things with our doctors in Texas.  This alone was a miracle because one of the doctors here was not happy that we were seeing two separate teams and he even admitted that it was a pride thing!  According to both teams of doctors there are likely only a handful of patients to ever display this type of EEG.  They are currently searching to see if there are any other known cases so that we can learn from them and also share what we have learned to see if anything helped or made things worse for them.  Lastly, we learned that some of the medications that Avagrace was taking prior to our stay were making her seizures worse.

One of the biggest challenges of intractable epilepsy is that it is resistant to medications and that ALL FDA approved anti-epileptic drugs have the potential to cause seizures.  Moreover what works for one patient does not always work for another and nobody really knows why.  We were very lucky to learn that Avagrace was having an adverse reaction to one or more of her seizure medications.

Lastly, we learned that Avagrace is in a "honeymoon" period right now due to just having the Vagus Nerve Stimulator removed and due to stopping THREE lines of Anti-epileptic drugs.  This means that she is, for the first time in 6 years, on just ONE anti-epileptic drug.  We still have three lines of rescue meds, oxygen, her chair, her helmet, suction, and everything else to treat her when she does seize.  But for a while, she will only be on one medication which is a miracle in itself because that means less negative side effects and more chances for her to progress in other areas like speech, physical, occupational, and cognitive abilities.  (All of these areas are affected by these medications that are created to alter brain waves and electricity in the brain).

So while all of this is good there is some unfortunate news as well.  We also learned that there was a lot of slowing in her brain activity.  And due to the type of slowing that it is, we know that it is caused from lesions and scar tissue due to the incredible amount of seizure activity that happens in her brain on a daily basis.  There is also the possibility that she may have suffered strokes during some of her seizures but we will not know that until they are able to do a more advanced type of MRI (not sure of the exact name) and some other scans and tests.  She has had some of these tests before but technology continues to improve and unfortunately her seizures do to, so it is very important that we check her brain every year or other year to see where we stand scientifically.  These tests will likely take place in Texas (pray that our insurance agrees with us because Texas is much better equipped to handle this and has many technologies that Oklahoma does not have).  After those tests we will then plan on the possibility of brain surgery to fix the lesions or if it is too risky we will just leave them as is.

However, before I consider brain surgery I desperately want to raise the funds to go to Colorado.  Medical Marijuana, specifically the cannabis portion of marijuana has been shown by the FDA and so many others to reverse the damage in the brain like Avagrace's lesions.  In fact, the government, despite their constant efforts to tell us that Marijuana is horrible, actually owns a patent for Cannabis.  In that patent it states that they are well aware of its healing properties that the cannabis has in the brain!

The most devastating part of our stay, and the part that I am not sharing with our kids, nor am I choosing to accept, is that it is very unlikely for Avagrace to make it out of her teens.  So I am asking you to refute this as well.  Surround her in prayer and please, if you can help in anyway, to get us to Colorado, my daughter is an amazing human being.  She deserves a chance at healing and living as does everyone in our "free" country and in this world!  I urge you to call your senators, vote with an educated decision, read, learn, share, and if you are able to donate to our fundraiser so that we can afford our first few months in Colorado, to give Charlottes Web a try, than please do!

There are so many children like my daughter, and it will take a revolution and a community that loves the children of this world, to give them a chance at life!

Thursday, November 14, 2013

Faith, Falacy, and A Heart That Hurts

Oh how my heart hurts right now.  Not because of my daughter.  The testing is moving along as it should and things are well.  But on the other side of OKC one of my dear sweet friends is also in the hospital with her child.  Her son Nikko has Dravet Syndrome.  It is one of the intractable epilepsy's.  Nhora, Nikko's mom has welcomed our family into her home several times.  She has helped us in so many ways.  With wisdom that only comes from experience, outreach to help Avagrace get some much needed medical supplies, and love for all of my children as she calls herself "Auntie Nhora."

In fact it was only a week ago today that I saw Nhora and sweet Nikko at our monthly HopeLink support group meeting.  His mom Nhora and father Dana, are also some of the advocates that was present at the Capitol meeting with Senator Connie Johnson.  Yet, today, Nikko is in the PICU fighting for his life.  He is on a ventilator and needing a platelet transfusion.  And the kicker (as if one is needed) is they do not even know why.  How this "kicker" comes to light so often in the case of epilepsy.  There are so many unknowns that even doctors can't explain.  And the only thing that will change that is awareness, research, and the knowledge that comes from these factors colliding.  PLEASE PRAY FOR NIKKO & HIS FAMILY!

For a long time I have struggled with the guilt and grief that comes from seeing my friends and their children and families suffer, while others  with no known differences thrive.  From being a mom in the special needs community I know many unique children.  In fact, I am at the point where I know more children with "unique" syndromes and conditions than typical children!  And it never makes sense when one child thrives and another goes down hill.  Despite doing everything the same.  The perfect example of this is one of my other friends whom has twins with the same genetic makeup.  The same diagnosis.  And yet one of her sweet boys has joined our Creator and the other is still in her arms and is thriving!  What a complex grief that must be.  How is it that despite every variable being controlled and taken into consideration nothing "adds up."  

I honestly think that this is one of the reasons why I hate math.  I understand that "it is the way it is" and "you get the answer from following the formula."  But LIFE is not like that.  Despite this being a scientific-mathematical world there is nothing predictable about it.  I don't care what you tell me about "evolution" or equations.  I have lived and learned and seen more than many people have who are far older than me.  I absolutely am not saying that I have seen it all or am an expert in everything.  However, it would be foolish to think that what I have studied, experienced, witnessed, and lived has not taught me something.  And despite all of that, the hardest thing to fathom, the thing so many people try to refute; is we are not the creators of our destiny no matter what way you spin it.

We are in this world that was CREATED.  There is so much that we do not know and will not know until we are walking in Heaven with our Savior and our Father.  It is faith that reminds me that we are ALL HIS children and that no matter what we do, we will one day be with HIM.  It is not up to us to determine when that is.  We can make all the right decisions and that doesn't mean that we will see tomorrow.  But that doesn't mean that we should just throw our hands into the air and watch life pass us by.  We are here, where God placed us, entrusted to use our brains and our bodies for good.  He did not give us "Chutzpah," intelligence, skills of adaptation, love and a whole host of other wonders to waste.

Yet, like knowledge and wisdom, faith does not magically make everything better.  Faith is like a muscle that gets stronger, but even the strongest Faith cannot move a mountain unless God ordains or approves it.  Faith can move mountains but if it were that easy we would not need God.

So right now, in this moment, I have faith in God for my friends and their children typical and unique.  I ache for my friends that do not have their children physically here to hold and snuggle.  I am broken over the knowledge that miracles can happen but do not happen the same way for everyone.  And I am at times overwhelmed by the guilt that one child suffers and another thrives, that even in my own family some thrive and some have immense difficulties to overcome.

But along with faith, the one thing that I hold on to for dear life.  The one piece of fiber that is so deeply engrained in my composition, is this;  we are not alone.  Because of that fact each situation, each challenge, each obstacle, and each and every celebration is relative to where we are and what our Creators purpose is for us.  Without the experiences that we go through, we cannot empathize, sympathize, or be any kind of support to those around us.  And without each and every experience we cannot be true versions of us.  It would be ridiculous for me to think that my life would be better if x-y-and-z were different.  And so, when my mind wanders there.  When my heart is so heavy I feel it in my toes.  When I feel as if I cannot breathe from the weight of reality.  I remind myself that I am a better person and will be able to help someone else because of my struggles.  If we cannot relate to our fellow human beings, than what in the world is the point or desire in living?

Please DO something to share YOU.  To empower others and to share the burdens that transform us into better versions of our self.  BE BRAVE and extend whatever it is that you have to extend.

Monday, November 11, 2013

Extended Video EEG Monitoring

If you have epilepsy you know what an EEG is.  If you do not, it is a test that reads your brain waves/electrical activity in your brain.  There are metal disc-like nodes that are attached to wires.  These nodes are glued on to your scalp.  A typical EEG lasts a few minutes to an hour after the leads are placed.  An extended video EEG will last at least 24 hours and go as long as they need it to go.  Ours will last about a week.

All Wrapped Up!
Now that we do not have the Vagus Nerve Stimulator and since Avagrace's seizure activity has increased so drastically over the past several months, we needed a new "base line" test to evaluate where her "storms" are starting, traveling to, and ending.  We are on very limited medication right now and will be off of it all together very soon.  This is so that we are able to get an accurate assessment of what Avagrace's seizures are doing and are like.  We will also eventually do some "stress" type things to see what triggers her seizures.

These stays are never fun.  You are literally asking for what you are trying so earnestly to stop.  The release form when you come into the Epilepsy Monitoring Unit warns you that death is a possible side effect of this test.  You also are in a room with Oxygen, Suction, CPR tools, and all sorts of other life saving tubes and devices just sitting at the ready.

Meanwhile, I am making it fun, singing songs, coloring, playing silly games (candy land is her favorite) and making craft, after craft, after craft.  She hopes to have some visitors at some point and I hope for her sake that she does.  She is such a selfless little girl, she never asks for anything.  But together we will get through it.

I am very blessed to have my friend Brittany, who is also a special needs mama, take my youngest on as her own this week.  He is spending the night at her house and she is taking him to and from pre-k.  The our dear friend Pepsi has the other three kids in the morning before they walk to school for Breakfast and Brendan will be home in time to meet them after school.  It is a busy week, but I am so glad that I am here, close to my other babies, and around nurses that I love.  I only wish I could convince some of my Texas Doctors to come to this hospital and for them to bring some of their practices too!

We do not know what tomorrow may bring but for now, we are slowly drifting off into lala land!

Sweet Dreams!  And if you have a purple shirt and can post a pic of yourself wearing purple (even if it is purple pants or socks) please post it on her page Facebook.com/avacake !!!!  I would love to show her some love that way!

Thanks for following us on this journey!  A video will follow soon!!!

Tuesday, November 5, 2013

Epilepsy Awareness, Germs and Sickness

Any mother of multiple children will tell you that having one child sick causes a dread in the pit of your stomach because it is almost inevitable that the sick child will be healing just as the next child is coming down with what the first one had.  From there it is a marathon for Dr. Mom 24/7 until the domino effect has reached the last one standing.  For special needs parents there is an added insanity to this race.

Much like a new mom bringing home her first baby you are on high alert for foreign and added germs.  You wash your hands and everyone else's until you have to send someone to the store for more soap!  Clorox wipes, bleach, vinegar, and baking soda (whichever your weapon of choice may be) is at the ready.  When you are not checking foreheads, pushing fluids, or making soups you are cleaning sheets, carpets, "puke pans" or throwing away emesis bags.

Yesterday Aidan woke up with a fat lip.  No big deal right?  Unfortunately no.  He has had random allergic reactions, in the form of hives and wheezing, over the past two months.  There has never been a rhyme or reason to it and I have yet to figure out a culprit.  Unfortunately, the fat lip that was big enough to look like a duck bill was enough to make that gut feeling or "mom instinct" wave the flag and head to the doctor.

Going to the doctor is enough to cause a full-blown panic attack.  Fortunately, our pediatrician is someone that I am proud to call a friend.  I love to visit with her and I trust her immensely.  The problem is not her, nor her office, nor the realization that diagnoses come from doctors offices and hospitals.  The cause for alarm comes from all of the germs that we will interact with on our way to see her.  Despite their very clean office, there are always germs lurking.  And despite our best efforts we almost always bring some souvenir home with us.

Some of you may be saying "so what, it makes your immune system stronger."  And several years ago I would be saying the same thing.  In fact, when my children were very little I did not separate the ones who were sick with chicken pox because I wanted it to be done and over with while they were little and better able to handle it.  But now, sickness and germs are treated like the plague.

You see, many people are susceptible to seizures while they are sick and running a fever.  These seizures do not make you epileptic.  They are called febrile seizures and are often times non-epileptic febrile seizures.  So as you can imagine, a little girl who already has a handful to hundreds of seizures every day, sickness only makes life that much more complicated and dangerous.  Add to that the not-so-simple fact that Avagrace has trouble regulating her body temperature and we can get into serious trouble very quickly.

From the time Avagrace was born she was very finicky about her body temperature.  She was like Goldilocks and liked everything "just right."  As a baby I remember her sweating.  She would sweat in the car-seat, she would sweat if I had her in too many layers, and she would sweat for no apparent reason.  Then she would be too cold and literally shiver.  Fortunately her internal temperature has never faltered.  She has never been hypothermic and she has only had an actual fever a handful of times in her 9 years of life.  Unfortunately, a few years ago she stopped sweating everywhere except her head and even there it is a very small amount.  Still, every time she gets overheated her seizures increase.  Then after she has a seizure she is so cold all she wants to do is cuddle under a mountain of blankets.  We just have to be sure to time the removal of said blankets in enough time so that she doesn't get overheated again.

In the summer she wears a cooling vest.  It is literally a cotton vest that has pockets to hold ice packs.  And in the winter she wears several layers so that she can take off and put on as needed.  Cardigans are her favorite.

Aside from her temperature issues, germs are especially hard to fight.  Her body is already use to high doses of strong medications that are in fact to high for adults like me.  So her body does not always cooperate with antibiotics.  Just last month she had to have two rounds of antibiotics just to battle a UTI.  And every time her immune system is battling some germ, her seizures are able to break through much easier and her seizure stats multiply very quickly.  The two and a half days of her UTI Avagrace had over 300 seizures.

We currently have two kids, my husband, and I who have sore throats, headaches, and nausea.  And I am trying to sanitize everything as well as keep the kids at a reasonable distance from each other so that hopefully Avagrace will not catch whatever this is.  So today for epilepsy awareness I wanted to share that a simple cold or UTI could in fact steal my daughters life.  It isn't something that you are warned about when you first hear the diagnosis.  It isn't even anything that you will typically read on awareness websites.  Yet every parent of a child with intractable epilepsy will tell you to say no to germ sharing!

It makes me think twice before I run to the store to get that one thing that I can't live without when I am fighting 'just a cold'.  I know full well that it is not always possible to stay at home.  My husband does deploy and I have five kids.  But if you have the option to quarantine your germs I am sure that there are plenty of families who are battling rare disorders, cancers, and the like that will thank you!  And I know that those families, like myself, are also thankful for things like antibacterial wipes and hand sanitizers that I can carry with me to help fight germs when a sink and soap are unavailable.

Sunday, November 3, 2013

Legalizing Marijuana, Meeting A Senator, CNN, The Realm Of Caring, and Sweet Avacake!


Yesterday was a pretty big day around here.  As you all know (or if you are new around here, you are about to know) our oldest daughter Avagrace, or affectionately known as "Avacake" has a rare and catastrophic form on intractable epilepsy.  She battles seizures EVERY. SINGLE. DAY!  And she has for many YEARS.  We have failed to gain control with over 17 different medications.  She is 9 years old and has had five epilepsy-related surgeries.  And until recently, there has been no hope for control.

Two things to make this an easier read.  If you are a resident of Oklahoma, the very last paragraph gives you specific instructions on what YOU CAN DO!  And If you know the ground-breaking life-altering science that is happening in Colorado with the Realm of Caring than feel free to skip ahead to paragraph 6.
Sisters by diagnosis our friend Zoey!

But in Colorado, there are people who are fighting for my daughter, and the thousands of other children that they do not even know.  You see it all started with a mom, who much like myself, would not give up on her child.  She and her husband would travel to different states and research different doctors just to find someone who was willing to fight along side of her.  Their names are Matt and Paige Figi.  They also were a military family when all of this started, but as many of us know, being a special needs family in the military is not all that the Department of Defense claims it to be.  You can read more about their story here.

In their journey to fight for their daughter Charlotte they heard of families around the world that were having success in using Marijuana to treat neurological conditions like epilepsy.  And from there, they teamed up with an amazing family, the Stanley's, that was willing to spend countless hours perfecting a strain of marijuana that would have high CBD and very low THC.  THC is the part of "weed" that causes the "high."  That means, that the strain that they are growing legally in Colorado does not have the property that the Federal Government has deemed illegal.   The Stanley's named this strain "Charlottes Web," after their first patient Charlotte Figi, who after just one dose had SEVEN DAYS SEIZURE FREE!

So, you might be asking yourself, why in our country of "freedom" is this natural plant not available to all children who need it?  Well, it starts with what we teach our children and our society through drug education, "D.A.R.E" "Red Ribbon Week" and the like.  Marijuana in any form is taught to us as causing a plethora of side effects and conditions.  The Dare Website says that Marijuana is "addictive, makes it hard to concentrate and learn, makes it hard to sleep, causes colds, coughs, infections, etc."  But those statements are simply not true.  Yet, all of the medications that are FDA approved for children with intractable epilepsy cause anything from liver damage, breathing difficulties, kidney stones, a likely "fatal rash" known as "Steven Johnson's Syndrome" which Avagrace was very lucky to survive, and psychotic behaviors.  One medication that Avagrace was on (and not the one that caused the rash) caused our very happy calm daughter to rip her hair out in fits of rage, confusion, frustration, and feelings that she could not cope with at the tender age of 4.

If you don't believe me, I urge you to watch Dr. Sanjay Gupta,  a well-known doctor who has long been revered in this nation, discuss how he was mislead and has since changed his mind on the topic of Marijuana. I have created a playlist on YouTube that has videos about everything that I have mentioned, along with our own videos, a full version of Dr. Sanjay Gupta's "Weed" documentary, the Stanley's Realm of Caring, Charlottes story, and a few other Vlogs that I think are amazing in the education of Epilepsy Awareness!

So, back to our story and our day yesterday....  :-)

If you know me in person or on Facebook, you know that I like to talk and share and advocate.  But when I first meet you, when I am in serious situations, I am not a talker.  I am also an empathetic person and along with that comes tears.  When I went to the capitol yesterday I had no intention nor desire to talk.  I absolutely did not want to be in front of CNN cameras, senators, and the leading advocates for Charlottes Web, and start crying.  I was very lucky to be at this meeting with some of my most dear friends who are very good at advocating with their spoken words.  Near the end of the Q&A/sharing your story session I felt very moved to share our story.  Many people had shared why it was absurd for our country to require people who are fighting illnesses that are death sentences, to leave their families, their businesses, their jobs, their animals to travel to another state just so that they could have a chance of survival.  But our story is unique and has an added complication (not to say that anything that someone else is going through is any less important or challenging, but you will know what I mean in a moment.)

Senator Connie Johnson, Virginia and Avagrace Spencer
You see, our family is owned by the military.  And that was our choice and we are glad to serve.  But we cannot choose to sell our life here and move there.  We cannot choose to give our animals and our land away or leave our family.  We already have left our family in Pennsylvania and Maryland.  We are Pennsylvania residents who are stationed in Oklahoma.  We pay taxes in both states and are legal residents of PA with a special military status of being a resident of Oklahoma too.  For us to move to Colorado we will be splitting our children up because my husband cannot leave the state of Oklahoma unless he is on temporary leave or on military orders.  Moreover, he is in a critically manned position and therefore he cannot simply change jobs and request a transfer.  This is his base and this is where he will stay for the duration of his career.

In order for our daughter to have a chance at this miracle drug I will have to move to Colorado and stay there without my husband and some of my children.  I will not be able to leave with Avagrace because every other state that borders Colorado deems this medicine illegal.  If we left Colorado and were apprehended Avagrace would be taken from me and I would go to jail and face charges that could include life imprisonment.  Which means that I will only see my extended family if they can travel more than half-way across the country.  I will only see my children when my husband was approved for military leave, so that he may bring them to visit us.  And I will need to be prepared to deal with the feelings that some of those children will have in regards to me leaving them behind.  (Thinking about this more also means no road trips, vacations, or ever leaving the state of Colorado.  It is a good thing Colorado is so beautiful!)  On top of that we will need to figure out a way to split my husband's enlisted military pay between two households in two states because my days are spent taking care of Avagrace, her therapies, her doctors appointments, her education, and her dozens of daily seizures.  I would also be a single mom taking care of the other two or so children that I would be taking with me.  And the cherry on top of this amazing sundae of goodness is that I would be considered legally separated from my husband in the military's eyes and would have sacrificed my own life insurance and eventually all of my health insurance as well because I am changing my state of residence and my children's to a state other than the one that is our permanent state of residence and our current state of residence according to his orders.  And after being legally separated for X amount of time you are considered divorced.  (I realize that this is rather confusing so I will sum it up in one sentence now).

The military will recognize me leaving my husband as a legal separation of our family.

To be honest, I do not remember exactly what I said and I know that it was much more fluid than what is written above.  I am also proud to say that I did it without more than a very few un-noticeable tears!  Before I shared our story Avagrace had already had a cluster of 15 seizures requiring me to get up, maneuver her chair out of the room in which CNN was filing the speakers, and administer two rounds of rescue meds in the Capitol building's bathroom.  Before we left yesterday she had used up the oxygen tank that I had with us (which has never happened before) and she had in total 17 seizures, including 2 GTC's (aka grand mal) and some complex partial-partial seizures among others.

When I raised my hand to share, I was blessed by several individuals that not only had helped me to get Avagrace in and out of the room, find a chair, share their sweater to warm her after her medication was administered, but they then stood by me and called out to Senator Connie Johnson so that I would be heard when dozens of persons from various backgrounds and platforms were vying for her attention.

Senator Connie Johnson
 talks with Avacake
By the Grace and Prompting of God I shared, it was heard, and I was Blessed.  I had several people come up to give both Avagrace and I words of encouragement and their commitments to helping us save our little girl.  I was able to speak to Paige Figi and Josh Stanley from Colorado.  Along with some leaders from Oklahoma.  Mike McGee, a gentleman who is retired law enforcement and is now the man behind "Oklahoma Weed" on Facebook (which is the Oklahoma Cannabis Activists Organization), and Senator Connie Johnson who sat down to talk with Avagrace and I, while CNN was waiting to speak with her!  She also assured me that she would not stop fighting for my daughter, I think that I can believe her considering she made CNN wait to speak to her so that she could take the time to talk to my sweet girl!  I was enormously blessed to meet some other parents and grandparents that are also fighting for their child's chance to beat this horrendous condition and catch up with some whom I have known for years but was never able to speak to in person.

NOW the most important part!!!  If you are in Oklahoma you need to call your state senators right now!  If you do not know which senator is yours go to this website and put your zip code in to find out.  This is what you need to request.  You need to request that Bill 1845 (which has advanced unanimously) to be heard in the senate.  Despite its overwhelming support this bill has been refused "floor time" and will not be heard.  ALSO, talk to them about Bill 914 which would leave the decision of medical marijuana up to the doctor.  In a country that reveres doctors as knowledgeable, amiable, and intelligent; why can doctors not prescribe the medication that their patients need?  Finally, Senator Johnson cited House Bill 1441 saying that this is one that needed to be repealed!  The senate reconvenes in February.  They have the power to pass emergency bills that would allow our children the medication that they need.  But none of this will happen without you!  Oklahoma residents I urge you to consider this.  With over 71% of Oklahoma residents being on board for the use of medical marijuana, why do we have the strictest marijuana laws in the country?  




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!

Friday, October 25, 2013

Avacake, VNS Removal, and Her Intractable Epilepsy *Update

So here's the deal, down-low, low-down, scoop, deal-y-o, and you get the point.  If you follow us on youtube (sevenswansaswimming) or Facebook (Avacake), than you know that Avagrace and I just got back from Cook Children's Hospital in Ft. Worth Texas because Avacake had Neuro-Surgery.  A few years ago Avagrace got the Vagus Nerve Stimulator placed.  For those of you that do not know what it is I will describe it in the next paragraph, if you do know what it is feel free to skip to paragraph three.  :-)

A Vagus Nerve Stimulator is a device that has been used to treat seizures that are resistant to medications, diets, and basically any other seizure treatments.  It is a pace-maker-like device that they place under the chest muscle on the left side near your arm pit.  The battery pack/transmitter then has a coiled node that wraps like a spring around the vagus nerve traveling up the left side of your neck.  This delivers electrical stimulation at regular intervals and varying intensities that are set by your doctor.  It is treated like a medication in the sense that it is increased in increments until the right "dose" is found.  It's purpose is to send electrical currents at a regular rate in hopes of interrupting the irregular electrical activity in the brain that is also known as seizure activity.  The device comes with a magnet and works with magnets.  So when a seizure starts you place a magnet on the "battery pack" portion to get it to deliver the currents at that very moment to try to stop the seizure.  This becomes your first line of "rescue medicines."  Rescue medications are what you give to stop seizures.  Most medications are not given for every seizure.  However, the magnet is.

When Avagrace got her VNS it was not an easy recovery.  What is meant to be an outpatient surgery ended up being a three day stay in the hospital because she could not swallow her pills and choked every time the stimulator went off.  It was initially set for every five minutes lasting 30 seconds to one minute (I cannot remember exactly) and it was a nightmare.  Eventually with OT she was able to swallow again but despite getting use to it going off, she never didn't feel it.  We changed the setting frequently and hoped to find one that worked.  Because of how many seizures she has it needed to be on a high setting.  Unfortunately, it just made life a nuisance.  However, for the first year it was exactly that, a nuisance.  The pros still outweighed the cons.  She was able to adapt to it and although she still felt it, she could deal.

The VNS did not stop her seizures.  However, it did work wonders on her absance seizures (petit mal), her complex partial seizures, and her overall focus, memory retention, word finding abilities, and mood.  There was good to the VNS.

Then after about a year her neck started to look very strange around the VNS.  We could always see the battery pack and the line up her neck.  Avagrace is tall and very skinny.  She has a very high metabolism and therefore has to be on extended release on any medicine that has XR/ER as an option.  She drinks pediasure and maintains a healthy weight.  But it is something that we have to be mindful of.  Because she is so skinny, her VNS was obvious.  Slowly the lead seemed to slip down lower and lower on her nerve.  Then a strange spiral was visible on her neck.  It looked as if part of the lead had come off of the nerve and coiled just under the skin.

I immediately brought this up with her neurologist and he said that it was obvious that it was wrong and that we needed to talk to our pediatrician to get a referral back to a neuro-surgeon to fix it.  Well forgive me but I did not want to deal with the same doctor that did the first surgery if this is something that happened because it was placed wrong (which was what our neurologist had also agreed with).  So for nearly a year the office that put the VNS in argued back and forth with my Pediatrician (who NEVER gave up on Gracie) because they didn't want to see a patient of one of their partners, it was too awkward.  On top of that our military insurance would not approve to go to another clinic.

Then on New Years Eve of this year Avagrace had a series of status Abdominal Seizures (not even the "big" grand mal GTC seizures), and her heart stopped!  With a VNS paddles cannot be used so CPR is the only option to help her.  Fortunately it worked with one swift punch to her chest.  Unfortunately, she has needed to have CPR to restart her heart two more times since then.  Her epilepsy doctor here prepped us that this is just par for the course in an intractable epilepsy such as Avagrace's.  It is a progressive degenerative disorder and this is to be expected.  I was devastated that he did not have more fire to fight for her, no plan, no actions, nothing.  Just increase the meds that we are on and see us back in a few weeks.  My beloved pediatrician and I were not going to just sit idly by and not get help.  So even though the epilepsy doc here told us that "if we go to Cook Children's for a second opinion he will not see Avagrace anymore" we went anyway.  And I am so glad I did!  

Finally, on Friday October 18, 2013, we go to go to our "second opinion" specialist out of state.  He is a doctor that is part of a team in one of the best Pediatric Epilepsy Monitory Units in our region of the USA.  Because he is both out of network and out of state our insurance would not allow him to be the full time doctor but rather the distant voice of wisdom that we saw only once or twice a year (we have been going to him for the past three years but had to discussed the problems with the VNS yet) .  So this was the first time we had seen him in over a year.  We had been to his ER a few times recently and talked to him over the phone and through one of his fellow docs that was on call, but we had not had an office visit with him.  We went over everything and as soon as he saw the VNS he texted a Neuro-Surgeon from the same hospital and in less than five minutes he was joining our appointment.  He felt it, looked at it, read our history reports and they both came to the conclusion that X-Rays must be done because this could be causing Avagrace's heart to fail.  So, we finished up the appointment with a new plan.  The VNS was turned off and a new Anti-Epileptic Drug would be introduced to help with her still way above baseline seizures (hundreds a week).

We then drove home and had a nice weekend.  On Monday Morning I got a call from the Neuro-Surgeons office.  They got the X-Ray's and wanted to see us immediately and had rearranged schedules so that we could see him at noon the next day to get surgery schedule with emergency/urgent status.  All right!  So I know that when a doctor calls, you jump and run and do whatever they say because 1. they are a specialist for your baby and are rearranging their busy life for you (this must be serious).  2.  They care enough about your baby to rearrange their busy schedule and to call me the very day he got the report (I must trust him).

So despite the lack of baby sitters for four kids while my active duty husband still has to work, despite me taking our one vehicle and leaving him without a working car, despite the ridiculous amount of gas we have spent going to and from Ft Worth, none of that mattered because we knew that beyond a shadow of a doubt that God was orchestrating this.

We got to Texas and checked in to have the appointment and we learn that our suspicions were right.  It looks like the VNS has been put in wrong or that it has slipped on its own and it has to come out immediately.  We could just leave it in and keep it turned off but there is always a risk that a magnet (think theft protection at stores/my husbands air force base/airport security/the science museum/cellular devices, etc...A magnet could turn it back on and we wouldn't know it.  But there is also the huge risk that even if it is not causing the heart to stop we cannot use paddles to save her if CPR does not work.  And that I am not ok with.  So we agree that for so many reasons (some that I do not include here) the VNS and lead need to come out.  The reasons for it coming out right away are because of her heart.  Over the past several weeks her seizures have gotten progressively worse and based on her history we have to be prepared for her heart to stop at any moment. It is also deemed an emergency because the slippage/coiled part is wrong and there is a threat of it causing damage to the nerve or other areas of her neck/throat area.

So, Surgery was scheduled for the next day.  We head to pre-op, get blood drawn, breathing checks, heart checks, and her history evaluated and communicated.  We got our instructions for arrival time, surgery times, and what we needed to do for prep at home prior to surgery.  Fortunately our doctors talked to the social worker who was able to secure a room in an amazing Ronald McDonald House.  So, it is the night before surgery and I am pulling into the RMDH when I get a call stating that Tricare is not going to cover the surgery for at least 6 days.  So I call tricare and 57 minutes later I know what form I have to tell the nurse to call in and complete over the phone.  I call the nurse she says that she will in the morning.  I tell her that she has to do it now.  She gets huffy but does it and finally we get approval for my daughter to have the surgery that her doctor classified as emergency surgery.

The next morning we got the call that Avacake was supposed to arrive several hours earlier because she would be going back with a different surgeon, ahead of planned.  All went smoothly and the new doctor was great.  I mean GREAT!  He even asked to pray with us before taking her back to operate.  It was such a huge blessing and confirmation to me that we were in the right place at the right time. 

After taking her back to the OR I anticipated surgery times of 2-4 hours depending on how grown-in to the nerve the coil node was.  At just shy of 2 hours the nurse called to tell me that the coiling/slippage was a benefit in removing it because it just slipped right off of the nerve in all but an inch of nerve.  The scar tissue that formed, actually formed in between the wire and the nerve rather than fusing them together.  There really could have been no better news in this surgery!  Secondly, the direction of the node was not wrong so it was unlikely that the VNS was causing her heart to stop.  That means two things.

1.  Her heart stopping during status seizures may just be a normal wear and tear on Avagrace's body when it comes to her disorder and how intractable epilepsy and her specific seizures affect her as an individual.

2.  We are so glad that we got the whole system out of her body because now we can do more to get her heart going if it stops again.

So this is why we did what we did.  There was nothing done during this phase to work on decreasing the seizures aside from increasing and adding a fourth medicine.  So Avagrace is still seizing hundreds of times a week and there is nothing more that we can do at this point.  The surgery was for the reasons listed above.

I hope that this sheds some light on the confusion.  If you have any questions please feel free to comment below or contact me, I am glad to answer them or find the answer for them!

Friday, October 11, 2013

Yay For The Weekend!

The past two days have been our kids "fall break."  It has been a lot of fun having them home.  Days like this are often filled with stories, crafts, games, and all sorts of other fun.  Unfortunately, Bren is not on the same schedule as the school kids and thus had to work, but today is Friday!  YAY!!

I am especially looking forward to this weekend because the weather here has finally cooled off and I have a renewed sense of energy and purpose as a mom and household maintainer.  We are organizing and moving furniture and STILL unpacking!  Yes, over a year later!  YIKES!

We are also busy getting the fall/winter clothes out and shelved.  I don't know about you guys but this always takes an incredibly long time in this house.  Switching over five children's wardrobes.  Figuring out who fits into which size, who needs new clothes, and what we need to pass on to others.....well, it is a big undertaking!

Laundry has never been my strong point as a mom to five children!  And the change of seasons only makes that problem dramatically worse!  But in this trial I am reminded that sometimes it is good to have that cleansing dose of humble pie.

It is never easy for me to share my very imperfect and therefore perfectly messy craziness.  I much prefer to angle the camera just so, therefore the mess is just outside of the shot.

But sometimes the most cleansing and life-changing times in our life come from God shining His Light on all that we do NOT want to share.

One of my dear sweet friends sent me a text message one day asking how I was doing.  I told her something along the lines of being knee deep in laundry in a house that looked like it should be featured on "Clean Sweep" or "Hoarders."  Her reply was priceless!

She sent a picture of her laundry pile and a smiley face saying "Hugs to you friend, I am right here with you."  This seemingly silly or unimportant text message changed my life.  It made me feel that connection, that "I am part of a team" feeling that I always had when playing team sports in High School.  I went from being this solitary mom in the sea of monotony, to being one in a team of moms.  It made my role as a mom less lonely and it reminded me of my purpose.  Not to mention it gave my friend and I a really great bonding moment.  Several times after that day we would send each other pictures of our messes with smiles and hugs.  (I might have to send her another picture in a few minutes, it is long over due!)

My purpose as a mom and my goal in life right now are deeply rooted together.  I want to raise the next generation of families.  I want to raise daughters who want to be educated, world changers, who LOVE to be MOM's.  I want to raise sons who want to be educated, world changers, who LOVE to be DAD's.

And here is the finale.....I also want to raise people who do not feel empowered/safe/loved/important by their STUFF!  I DO NOT want to raise materialistic consumer driven people.  I want my children to be fueled by God and ignited by the people and experiences of this world.

MEMORIES, NOT STUFF!

But how am I to do that when I have emotional attachments to THINGS that I have had since I was their age?  How am I to do that when I am so excited by the library I have created for my children?  How am I to do that when I LOVE to bless my children with the things that they want in this world?

God is showing me that in His Light, the dust bunnies are breeding and the things that look so appealing are really not as glorious as they once appeared.  Through His eyes, I am taking on my home and learning to live a more simplified life.

The past few years have taught me that to make it simple, you have to put in a whole lot of hard work first!  This change doesn't come over night, but the more I purpose to change, the more He is able to teach me.

So here is to the purging of stuff this weekend!  There is nothing like a good fall cleaning!  :-)  

Friday, October 4, 2013

What It Means To Love, In My Opinion

"To love is sometimes the hardest thing, because to love is to open oneself and become vulnerable. To present your feelings to another and to take responsibility for their well being in an emotional, spiritual and tangible way. Love is the greatest gift, the greatest reward, the greatest challenge. If ever you feel like you did not portray your love but instead your emotions; then if your love is true you will try again from a more vulnerable, sensitive, and earnest position." ~ Virginia Spencer

The past 24 hours have been a very intense learning experience for me.  It is always hard when you see aspects of yourself that you are not proud of.  Unfortunately, last night I realized my own selfish empathy.  You see I have several friends that have lost children to rare/undiagnosed medical disorders.  In this I have so wanted to be there for them.  I so eagerly wanted to have them share with me what they were going through that I never stopped to think what it would be like to have to talk about the death of my child or share how I was feeling to someone who had not been through it.  


You know the experience you have when you are trying to hold your emotions together and not cry, but then someone says "are you ok,?" ever so sweetly, and you just loose it in tears?  Or when you try to approach an introvert to make them feel welcome because they are sitting by themselves, but instead of making them feel welcome they have anxiety that all eyes are on them?


I can imagine that asking a friend to talk about their child's death or share their feelings with me is on some remotely similar level.  


It saddens me that my friends are going through such a difficult time.  In a perfect world people would only die from natural causes at a ripe old age.  


But my need to make them aware that I am here for them and asking them to confide in me; is in fact making them handle their grief in my way, not theirs.  



This does not make it any less difficult for me to know what to do when the period of bringing meals and sending cards has come and gone.  It does not make my prayers and messages of encouragement any less important.  

It just makes me remember that their grief is just that, theirs.  That they can do with it what they must to survive and that no matter how empathetic I am, I will not fully understand what they are feeling unless I walk a similar road.  

I am still very firm in my belief that everything is relative.  However different a situation is, nobody can ever fully understand what you are going through because they are not walking in your shoes.  The saying "walk a mile in someone else's shoes" is a great reminder for us to stop, think, and empathize.  Yet, it is an impossible task to ever fully comprehend all the variables a person is dealing with at any said time.  Some things are definitely more painful than others.  Some things are no doubt more difficult than others.  But that doesn't make someone else's struggle any more or less real.  

It just presents us with a greater opportunity to actively love someone. And by truly loving someone you take responsibility for how you affect that person.  So if you unintentionally hurt someone, it will be your love for them that will spur you on to reach them with love and kindness.  Likewise, if you are hurt by someone, no matter how difficult it may be, your love will urge you to seek them out and express your thoughts in hopes of growing in understanding and compassion.

All of that said, this process will only work if you are open to understanding and the other person in the relationship also wants to further your relationship.  Lessons of the heart are never ever easy, but they are the most rewarding!  

I am ever so grateful for the friends that cared enough to share their thoughts with love so that I could learn and hopefully grow in more understanding.  

Monday, September 16, 2013

Something Amazing is Happening

Something really awesome has happened!  You see, we (as a cable/antenna free family) have been huge fans of YouTube for about 5.5 years.  We love how we can look up kids music, like when certain musicians perform on Sesame Street.  We love how we can watch science experiments.  We love a family that blogs everyday and shares positive fun content for us to watch (they are called the Shaytards and have vlogged everyday for five years!) We have many things we like to watch together  as a family and then some channels that Brendan and I watch without the kids.  Our kids are not allowed to watch it without us and so they are only exposed to what we think is appropriate for them.  As many of you know, I have missed and struggled with the fact that blogging is something that does not fit my life at this time.  But, at the urging of my children I decided to give vlogging a try.  It has been great!  A few days ago Avacake approached me and asked if she could share some things about seizures.  All of my kids have always been camera and video lovers.  Not a day goes by that I don't hear "take my picture" or "please record this."  But for Gracie to want to talk about seizures, that was a big deal.  Unfortunately, Nine has brought some insecurities And embarrassment in regards to her special needs.  So being advocates and trying to raise as much awareness for epilepsy as possible I jumped at the chance.  We vlogged and she was so excited and proud of her video I asked everyone to watch it so that when she woke up the next morning she would feel great seeing everyone who cared!  One vlogger in particular was a huge catalyst to the joy and outreach that Avagrace experienced ad that is Louise aka Sprinkle of Glitter!  My children love to watch the videos she puts up of her daughter and they love to try to speak in her British accent lol!  This lady is a fabulous fashion, beauty, and lifestyle vlogger and blogger who is the Mom of one adorable little girl, Baby Glitter, and an amazing wife and inspiration to thousands.  If you know the expression "some girls are just born with glitter in their veins". It is very true of this lovely lady, but more than that, she leaves a trail of glitter wherever she goes!  She has a huge heart And I will forever love her for loving on my daughter.

Avacake's video has had over 550 views.  We have also had tons of amazing and encouraging emails and messages.  But with the good comes the bad and we had many new viewers that did not know Ava's story and so we also had many confused and negative emails.  So in response I have filmed an explanation of Avacakes story and diagnosis.  I am editing it now and will post it today.  I know that I will not be able to answer every question or even tell her whole story but it is a start.  And I really hope that this will continue so that more and more people will learn about epilepsy and the different types of epilepsy and seizures.

If you have any questions or suggestions on what I should cover, please let me know!  We appreciate you all so much!

Please, if you have a minute go check out Louise's blog at sprinkleofglitter.blogspot.com or her You Tube channel @ www.youtube.com/user/sprinkleofglitter

As always our channel is www.youtube.com/user/sevenswansaswimming and the video that I am talking about is titled "Sixty Second September 10 Avacake Shares Insight on Seizures".

Thanks for checking in and have a great day!!!!