Friday, March 21, 2014

Just Imagine...

It is snowing, the temperatures are in the single digits and the Oklahoma wind is surely sweeping down the plains.  It is 8 am and I am in Texas with Avagrace because she just had three surgical procedures in one day.  We were supposed to be home by now.  We were supposed to be home many days ago.  Yet Avagrace is struggling to recover.  Three procedures and 8 hours of general anesthesia were harder on her than we anticipated.  She has finally come off of the vent but her stats are still troubling especially at times of pain.  Most kids with intractable epilepsy have been on and off of ventilators regularly.  But Avagrace's lungs/airway has always managed to be fine.  It is her heart that gives out when the seizures get too tough.  This is the first time we have had any "vent dependency" and the first time that she has not been able to work through the pain without hyperventilating and causing more seizures.  We have been released to the Ronald McDonald house to try to avoid all of the viruses that are bringing lots of kiddos into the hospital during this particular time.  Some of these viruses would reek havoc on Avagrace's immune system and post surgery struggles.  But this morning we are up and traveling just a few blocks down the road to go to the hospital for outpatient care and therapies.  We are working our way out of the doors and into the ice and cold.  I have a mask on her face, many layers including 2 blankets over her coat and clothing.  She is tired and in pain but smiling and waving good bye to everyone assuring them she will be back after her appointments.  She is in her beautiful purple collapsable wheelchair that we are so grateful to be borrowing from the JDMC in Oklahoma (where she goes to PT and OT although we have not been in many months due to all of the surgeries and hospital stays).

On the back of her wheelchair is her oxygen tank, her rescue medication bag, a "diaper bag" (she hates that we call it that) but it is what it is, my purse and an extra blanket just in case.  Avagrace struggles to maintain her own body temperature and in the summer she rarely sweats (this past summer was the first time she had sweat since she was an infant).  I am so thankful for the Ronald McDonald house, for the family-like love they give us, for the meals, the room, the atmosphere, and right now I am especially thankful to the person who coated the sidewalks and ramps with salt.  When we get to the road to cross to the parking lot to get into our car slip and slide a bit but we make it without a mama wipe-out.  We make it to the car and I help Avagrace into her carseat.  We remove her coat so that her straps fit her snuggly and in the way they were meant to fit and I buckle her in.  I quickly put her coat on her backwards and lay her blankets on her lap.  I shut her door and start the car from the passenger side so that it can warm up a bit so that the heat can start working for her in the back.  I take her oxygen tank, her suction machine, and all the bags off and put them in the front passenger side seat of the car and shut the door.  I wheel her chair to the trunk.  I adjust the foot rest up, the arm rests up, and the handle up.  I push a latch while pulling a leaver with another hand and use my shoulder to push into the back of the chair to collapse it.  I lift the 40lb wheelchair into the van, push it around a bit so that it fits properly (we have a seat folded down to make room for it).  I close the trunk and walk to the front to get in.  When I open the door I see my darling Avacake is in a full blown Tonic Clonic Seizure, aka Grand Mal.  She has enough strength to tilt her carseat that is specially made for special needs kids of her size, and that has been placed into our car by experts.  She is leaning to the right and about an inch away from hitting the window with her head that is thrusting up and to the right it very tight rigid jerks.  I jump out of the car and into the back seat with her, trying to keep her in as safe of a position as possible and to get her oxygen on her.

After accomplishing that I check my stopwatch app that i hit as soon as I saw she was seizing.  It has already been several minutes.  I talk to her, I pray out loud.  I beg that this seizure will stop and that her heat and tongue will be fine.  (she has bitten her tongue so badly numerous times and this makes eating very difficult.  She is already having trouble eating since her surgery).  As I am watching the clock and preparing to give rescue meds if we hit our time limits my phone rings.  It is Brendan.  He is in Oklahoma with the other kids, who also are experiencing single to teen digit temps and school has not been closed.  He managed to get off work even though it was last minute due to the fact that we should have already been home in Oklahoma by now.  I hit decline and start to try to unbuckle Gracie so that I can hold her and lay her back a bit to give her meds.  Even if I recline our cars seat, her carseat does not recline with it.  I work on getting her into the proper position all while trying desperately to protect her from getting hurt in the back seat of a van where there are many obstacles and places to hit ones head.  I get her out and cradle her.  I give her round one of seizure meds.  A few minutes later I give her round two and this breaks the seizure but she is completely exhausted and confused.  She can barely lift her head and now I must lift her 80lbs back into her carseat and try to find her neck rester pillow to reverse and put under her chin so that she will keep her head up as much as possible to keep her airway open (this is not a medical device this is just something that we have come up with to help in situations like this).  I manage to get her strapped back in.  I climb back into the front seat and realize that I am sweating to the point that my hair looks like I got caught in a small rain shower.  I take some deep breaths and PRAISE GOD that she is still with me.

Before I leave the parking lot I call Brendan back.  He answers the phone and sounds very winded.  What is going on?  "Nothing, just walking the kids to school."  Me: "I thought that it was cancelled"  Him: "Nope.  Just OKC schools, not our [neighboring district]"  Me: But it is in the single digits.  Brendan:  "Everyone is bundled up and I think I have a ride to pick them up later, I didn't want them to miss school" (it is a very short walk)  Me: "You are such a good dad.  Thank you for bundling them up and making that cold walk fun."  We hang up and we are both off to continue the start of our day.

It is days and moments like this that inspired us to take Hope by the horns lol, and enter the NMEDA wheel chair van contest in honor of Mobility Awareness Month.  Avagrace is 9, soon to be 10, then a teen, than an young lady and so on.  We are moving to Colorado and I believe that God is going to continue to use her to prove that your diagnosis does not make you who you are, it is just a part of who you are.  Without this van we will continue to have situations like this.  We will not be able to move to Colorado.  We will not be able to just go somewhere because so and so invited us to such and such and we want our children to experience more than just doctors appointments and capitol meetings.

NMEDA and their contest has given us Hope of a completely different life.  So while I almost didn't enter because I know that there are so many other amazing heroes out there.  So many other families that need help and hope and a wheel chair van.  While I almost didn't enter because I knew people would judge us (duh it is a competition) and I struggle with caring too much about other peoples judgement.

I knew that this was the right thing to do.  This is another way to raise awareness of the challenges of special needs.  The reality of Epilepsy.  And because fighting for my daughter and being her advocate is why God gave her to me, so I better not let doubt stop me from being the best mom that this child could ever have!  And trust me all five of my kids are so beyond amazing, so supportive, so loving, so kind, so empathetic, and so incredibly proud of our unique family……well I have a lot to live up to because being their parent is not only the greatest blessing but also the most humbling and rewarding truth.  I have five amazing kids that God has given to me and I do not deserve them.

So, if you haven't voted, or shared, or understood why in the world we would even need a wheelchair van when Avagrace has the ability to walk and does walk as much as we can encourage her to do, she is in her wheelchair more and more (and this is what degenerative means, she will need it more and more and more as she grows and progresses) and to keep her safe and to give her the greatest chance at the best life possible.  To give her the tools that she needs to continue being the smiling child in the phlebotomy lab, and the little girl that makes friends every where she goes.  We must vote and share and pray and hope that somehow, everyone in Team Avacake will take 30 seconds out of the day EVERY DAY until May 9th to vote for her to be blessed with safety, comfort, and the ability to go to Colorado and get the treatments that she needs to heal her brain and give her back her life!  Say no to Hospice and say yes to Vote for Avagrace's NMEDA Hero page!  #NMAM14

http://www.mobilityawarenessmonth.com/entrant/avagrace-spencer-midwest-city-ok/

Tuesday, March 11, 2014

VOTE DAILY PLEASE, PLEASE, PLEASE, AND SHARE!!!!

Guess what?  We have a chance to win a custom wheel chair van through a contest sponsored by NMEDA (National Mobility Equipment Dealers Association).  The thing is that if you submit your story and it is approved you move to round two where you can get a custom URL to forward to people so that they can vote for you.  If the voters answer the trivia question each day then they get a second vote!  If you share the link people can see our story and vote for us and at the end the persons with the most votes are evaluated to see who wins one of three or so custom wheelchair vans.  Avagrace would be in her most safe position in a wheelchair inside of the van.  I am so very excited at the possibility of this.  This would be a LIFE CHANGER for us!  I cannot believe how much this would help our family!  So, if you have it in your heart, to set a reminder to vote daily, and to share with everyone you know, we can win this thing together!!!  Thank you all so much for loving my family!  I am so blessed and thankful for your help!!  Here is the link!!  Be sure to answer the question (todays answer is named above NMEDA), and vote every single day until May 9th!!!

http://www.mobilityawarenessmonth.com/entrant/avagrace-spencer-midwest-city-ok/

Wednesday, March 5, 2014

What we have been up to...

I know that it has been a while.  We have had a whirlwind of activity since the senate meeting.  The meeting that only a handful of senators attended while the other senators meandered around the senate floor talking about personal stuff, you know catching up with their pals.  The support from the people there to hear our testimonies and the talks from the doctors, growers, and scientists were awesome!  It was an emotional and yet thorough and educational presentation.  And still the hosting senator said that he would not support such legislation.  One of the legislators wouldn't even attend the meeting because "his church wouldn't approve."  Not because his constituents wouldn't approve, but his own church.  Basically, his friends.  But, Rome wasn't built in a day was it?

Following that meeting we have had some exciting doors open in Colorado and our quest to go.  We have one more major road block and that is having proper transportation for both of us so that Brendan and the kids here can go to work, school, appointments etc and one for myself and the kids with me to go to Colorado and do the same.  So while we are praying over this area and waiting for God's guidance we have been selling things and donating lots of other things so that we will be ready to live in two apartments versus one house.  Part of this is sad because I am letting go of things like scrapbook supplies because lets face it, I haven't had a chance to scrapbook in years!  Or the passing on of my sewing machine that is just a few years old.  But again, this is not a priority in my life right now and anything that we can sell to support Gracie's care or donate to someone who needs it….well that is what we will do.

On the same note as a vehicle I had been mulling over the chance to enter a contest for a wheel chair van via the National Mobility Awareness Month program.  I kept going back and forth on if we would enter or not.  I didn't want to take away an opportunity for someone who is in a greater need than us.  However, Avagrace's condition is both degenerative and progressive.  We have been using her wheel chair more and more and she is 80lbs.  80lbs post seizure and during seizure feels like a whole lot more than that.  Plus she seizes in the car often and should be positioned properly when she is post-ictal.  But the biggest thing is that it is so unsafe and so difficult to transport her from car to chair and back and forth when she is having her rough days.  I have torn muscles to prove it.  So with the love and encouragement of a dear friend whose daughter is also 9 and is in a chair 24/7, she reminded me how much of a blessing it would be and how much more we would be able to do if Gracie had this luxury.  So, we made our video, submitted it and if we are chosen to compete we will have a link for everyone to go to and vote up to twice a day I believe.  So on March 11th if we have been chosen I will start asking everyone possible to get the word out and vote.  Can you imagine the joy?  We would be able to travel safely and efficiently as a family in a van that would be made specifically for our family!!!  And it would be ours to keep forever!!  I don't want to get my hopes up but the thought of this is beyond words.

So, getting Gracie to Colorado is still our absolute goal and it will happen.  The oil will do wonders for her I am so confident, and we will continue therapies and working hard to overcome what the oils do not.  And, God seems to be working fervently on having our family be together through all of this too!  But that is for another blog.  I promised also that I would publish Gracie's "Life list" or "2014 Goals List" just in case this really is "the final chapter."  So that is my goal for my next blog.  But I can tell you that this girl is a big dreamer and we have a lot of fun planned for this year.  AND…some of them have already been checked off!!  The best part is that all but two of her goals seem attainable.  But one of her goals is to go and hang out with her (and the rest of our) favorite youtube family…I can't imagine this actually happening, but you never know.  I figure I can send an email and a few tweets and see what they say right?

The other thing that I want to share with you is we have another fundraiser happening right now!  It is AWESOME and just in time for EASTER!  If you are looking for a sweet stuffed bunny for your child or yourself for Easter, than look no farther than my friends Scentsy website.  The bunny is Lavender and not only will you be helping AVAGRACE but you will also be helping one of our favorite organizations the March of Dimes!!  We have had two preemies and when I saw this bunny it couldn't be any more perfect.  SO if you want the best bunny ever, or anything scentsy, please stock up now.  Just go to https://thedalkes.scentsy.us/Scentsy/Home and click on the "SHOP" and select "FUNDRAISER FOR AVAGRACE SPENCER" and there you go!  Fun right?

I hope that you all are having a wonderful week!  We had two snow days and I got to drive in snow tonight!  I love it!!  But then again, I live in Oklahoma but am a Pennsylvanian by birth so of course I don't mind snow!  However, Oklahoma is an over achiever.  We had 50-60 degree spring days then the very next day we had a thunder and lightening snow and hail storm with an earthquake too boot!  Oklahoma is never boring, that is for darn sure!

Alright, time to say goodnight!



Wednesday, February 12, 2014

"Fight for Life" is a movie from the 1980's that takes you through a families fight for medication for their child with intractable epilepsy.  When the US doctors told them that not only were they behind the in the treatment of epilepsy as compared to all other western civilizations, but that there was nothing left for them to do to help their daughter.  That they should just accept the inevitable:permanent mental retardation or death, the father who was an eye doctor decided to read every medical journal about epilepsy.  In doing so, he was able to find hope for him and his SAHW who took care of their 6 year old daughter during her multiple daily seizures, lethargy, exhaustion, and sometimes slow and sometimes rapid decline in mental function.  In doing his research this father was able to find hope in a medicine called sodium valporate.  The only problem was that it was not FDA approved despite it helping certain seizure disorders in infants, children, and adults with intractable epilepsy in the UK for over 10 years.  Fortunately, this doctor had the funds to move his family to England to get the medication to save their daughter and of course, because this is a hollywood film from the 80's there was a happy ending.  The irony is, that Sodium Valporate is one of the now 23 medicines that we have tried for our daughter.  This specific medication made my daughter so high that she sat staring at the ceiling with drool coming from her mouth with an occasional giggle and a more frequent screaming episode where she would rip her own hair from her scalp.  She was four years old.

Hello, my name is Virginia Spencer.  I am the wife of a United States Airman and the mother of five amazing children and I am here today, to tell you that Marijuana is a plant, that much like crocus, carrots, poppy seeds, and other plants that have properties in them that can be used in medications.  However, Marijuana does not have to be genetically engineered, nor does it have to be added to chemicals in a lab to bring out its healing properties.  It simply needs to grow.  And much like a tulip or a rose, this plant has many different varieties.  The amazing thing is each one of them has healing potential that has not only been proven but owns a patent by the US government.  You see, my 11 year old son wants to be the president some day.  Yet he can't understand why a government that sends billions of dollars in foreign aid to help children fight diseases and starvation and poor living conditions would not want his 9 year old sister to be saved by a plant that the government teaches is gateway drug, that causes addiction, violent crimes, laziness, inability to focus or see reality, and basically just get high….but that very same government also owns a patent stating that they know it is a neuro protecting that can heal lesions in the brain, reduce tumors, and so forth.

Our 9 year old daughter in the past three months, since our last visit to this building to discuss Medical Marijuana, has had four surgical procedures, 1 8 day long video EEG where she is hooked up to wires and recorded 24/7, only able to leave the bed to go to the bathroom, six trips to see her specialists in Texas, three medicine changes, 4 hospital stays, 11 tanks of her "rescue oxygen" 9 daily medications twice daily not to include four rounds of antibiotics from her weakened immune system due to all of the powerful drugs in her body that she must be tested for bone marrow depletion, liver failure, anemia, and other nutritional instabilities, as well as acidosis and ketosis.  She has had approximately 3,000 seizures in the past three months and has a brain wave pattern that means that she is constantly seizing whether we see signs of that electrical storm or not.  IN the past three months she has been placed on Hospice, and we are at the end of the road unless you vote to save her.

We did a story on the local news about Avagrace.  And about how she is such an overcomer that she pushes through and even though she may do things differently she wants to be able to do them.  In fact her therapist have had to spend more time teaching her to not push herself so hard because every time she fights for her self, she will end up seizing and regressing even more.  So we are in the constant breathe holding phase of do we push or do we just make her rest.

Can I see how many of you have children or grand children?  Please raise your hands.  How many of you would like to face the question of what is more important quantity of life or quality of life?  How many of you would like to sit down with doctors and fill out form after form of what to do when her heart stops again?  Because it has stopped five times in the last year and there are only so many times a heart can stop and restart before it is too exhausted to continue.

When we did the news story we had comment after comment of "if that were my baby I would be in Colorado already"  or "what are they waiting for"  etc.  Well first of all my husband is in the air force.  His life is owned by this location.  I am former military as well and we value our country, due process, and see it as an honor to serve.  But when you see the equipment my daughter is using it is all either borrowed or fundraised for.  My husband has be deployed to the dessert, South America, short trips stateside.  I have given birth to an 8 week premature baby while he was deployed.  I have traveled from PA to OK with a 6 month old baby, a 2 year old and a four year old by myself.  We are patriots and we are not ones to wimp out, or not do what we must for our country.

Yet, when our daughter is dying right before our very eyes.  When she is not understanding sentences.  When she is forgetting what she did four minutes ago.  We are required to split up our family of seven, travel to a new state, find new specialists (she has 9 different ones 13 if you include the ones out of state who still play a huge role in her care), new durable medical equipment companies, new places to borrow a wheel chair from (which I doubt any other facility would allow such a thing, we have been borrowing this amazing chair for four years).  Not to mention shelter, food, schools for my other kids, and someone to watch them when Avagrace is in the hospital.  and so on and so on.

When my husband deployed last year we had to go to the emergency room more times than I can count.  And do you want to know what I had to do with my other kids?  I carried a queen size quilt in my car that I would lay on the floor of the ER room next to my daughters bed so that they would be away form as many germs as possible, underneath the site of her constant seizing, hopefully out of the way of the doctors, but safe and not alone.  I have no problem doing that in colorado.

But there is something else I must think about.  How will our enlisted families income, which is already so low that we qualify for medicaid, how is that going to cover two households, in two states, medicine that is not approved by insurance (which we already face here), and a second vehicle since we are a one vehicle family?

Moreover, what happens when my military husband comes to visit his children and there is a federally illegal medication in our home?

Why is it, that the medications that she is on.  Lets see, one that is regularly used in criminals during lethal injections, one that is sold on the street so that people can get high, one that all I have to do is say its name…..VALIUM…..and everyone in this room with know the strength of it and then be shocked that my daughter takes up to 40mg of this every single day when most kids her age would take maybe 10mg for a seizure only as a very last resort once in a blue moon.

I think with all I have said you can understand why I am so frustrated with the United States Government System.  But maybe not.  Maybe you still see Marijuana as a gateway drug or worse than alcohol.  Or a drug with no research.  Well if this is the case then you have not done your homework.  CNN did an experiment with drivers who had taken medical marijuana.  They tested them at the legal driving level and then way above it.  They showed that the drivers were safer and more suited for driving than those with alcohol at half the levels.  Dr. Sanja Gupta one of the United States most famous Neurologists have scoured the country for success stories, and stores that would prove his old theories that the FDA and the DEA were right about this horrendous gateway drug.  And what he found are children like my daughter, thriving, learning, and experiencing not only a quality of life improvement but also a quantity of life improvement.

For patients like my daughter there is no telling if cannabis will stop her seizures all together and there is no telling just how much THC will be needed to help with the sleeplessness and nighttime seizures etc.  But to say there is no research is an incredible misconception in ignorance.  Marijuana was used in medical practices and stated in medical journals long before some people in the government deemed it the plant that has become the joke of many movies portraying hippy and gangster-like stupidity.  It has also be miraculous in hundreds of families that have had to flee their strict states regimes much like we welcome those from other countries who flee for help with medical care, or freedoms that they don't have.

But for a country built on the idea of land of the free, we have children dying because the states would rather hold strong to propaganda than science.  We have doctors and microbiologists and chemists and other persons that we trust with our lives that are too afraid to speak up against these ridiculous laws on marijuana because they will be blacklisted, fired, or have their medical licenses revoked.  Since when did a country that is free, dictate to the doctors and scientists what is safe and what is not?

Finally, I will end with this.  I am a Christian, I am a Conservative, I am pro-life, and I will hold every single person in this room accountable if my child does not survive long enough for us to raise enough money to move to Colorado, leaving behind my husband my last family member within over a 1,000 miles, my patriotic husband who fights every day for you to be able to sit here comfortable with what your pastors and fellow church goers say, going on vacations, and being able to provide for your family whatever it is that they need.  But I will also tell you this.  God creates all things.  This plant has a purpose.  And sometimes doing the hard things and fighting for what is right, is not popular.  But did that stop Lincoln, Martin Luther King Jr, or any other revolutionary that may have inspired you to the position that you hold in our communities today?  I don't think so.  So please, do not sit there and ignore the suffering of our family because it is uncomfortable and against the lies that we have been force fed since we were in kindergarten and first grade learning about the dangers of "drugs."