Tuesday, December 30, 2014

Looking Forward to a Year Full of Purposeful Prayer


Each December as the year ends I reevaluate the ways that I have organized my life in all areas.  Have I been doing the best that I can in meal planning?  Have I been effective and efficient with all of the doctors appointments without running myself ragged?  Have I spent enough quality time with each one of my chillies?  Teaching them things that they don't/won't learn in school?  Have I been spending quality time with my husband?  What about the time I spend in prayer with the Lord?  Is my desk organized effectively?  How about my kitchen?  Is everything in order so that if I have to go to the hospital for X amount of days that everyone will be fine at home?  and so on.  But one of my favorite things I do this time of year (other than preparing my planners) is to choose those friends whom I will pray for throughout the year on a regular basis.

When I first came to know Christ in 2002 I would take my church directory and pray over the families in my church (and my own family members) every night before I went to bed.  I would lay my hands on their pictures and go through a couple families until I went through the entire book and then I would start over.  I did this for a while but as life changed so did my prayer habits.  In college I would pray for people on a weekly basis.  It was completely unorganized and I would just go with the flow on who I thought needed some extra prayer.  Then when we moved to Tinker I would pray for the single airman who were new to the Air Force like us but without any family.  Each year my focus would change.  One year I choose ladies that really meant a lot to me and I would give each of them a day.  I chose about 21 people including family as always, and I would organize them by days.  That year I told the persons in the beginning of the year that I would be praying for them each week for the entire year.  Then as I became a stay at home mom I decided to make a prayer wall with pictures of families or friends that I would pray over throughout my days at home.  It has been a constantly evolving prayer journey that I love and look forward to each year.  

However, to be honest, this fall/winter has been very hard to do anything that I regularly do.  Being in a rental with rental stuff has put a damper on my excitement of organizing and planning.  I know that soon we will be back in our home and it will be better than ever, even if it is lacking furniture for a while, but why organize when I will just be moving soon anyway?  

So I would like to remind myself publicly of something that I have learned.  When your life is turned upside down and the rug is pulled out from under you-going through the motions is one of the best ways to find normalcy.  Living in a hotel for two and a half months and then moving here, in a strangers house, it has been so easy to throw off tradition and feel like we were in a constantly spinning dryer.  However, when Christmas came and we were able to deck the halls with our own decorations we had our first exhale.  I know that we are not supposed to build up treasures here on earth, but God understands the importance of history and tradition and he taught us that lesson through our Christmas "stuff".  

With that new found excitement I threw myself into traditions; too many Christmas traditions to list on this blog, planner shopping, organizing what I do have, and now choosing my prayer persons for this year.  And this year is more special than ever before, do you want to know why?

Because we have been loved on and cared for by so many people that prior to this year were just acquaintances or people we had not even met yet.  This year we felt and learned what agape love truly is.  I am not saying that we were not loved prior to this year.  I am simply saying that this year, we had a lot of hard lessons.  One of which was who truly cared for us.  And I am honored and so excited to return that love through prayer for so many wonderful people .  People who either loved on us this year or that my heart has been turned toward because they are needing some love.  Now the question is: Should I tell them that I am praying for them, or should I keep it a secret?  What do you think?

Monday, December 29, 2014

Five Golden Rings!!

"On the fifth day of Christmas my true love gave to me, FIVE GOLDEN RINGS!"  

So what are the five golden rings?  The Torah, also known as the first five books of the Old Testament.  These are the books that establish a foundation of our history as a people and a planet.  

So over the next few days will you read the first five books of the New Testament with your children?  Will you purpose to hear the truths that God is telling you there or will you look at it as a story with no proof?  If that is the case, I urge you to look up archiological evidence for what the Bible is telling you.  It is awesome to see the proof that is found to support a book that so many want to change or scoff at.  

Are you celebrating the 12 days of Christmas?  How?  I would love to know!

Saturday, December 27, 2014

On the second day of Christmas...

"My true Love (that is Jesus) gave to me, two turtle doves and a partridge in a pear tree."


Two turtle doves represents our devotion and our covenant loving kindness.  There are also two to represent the job of each individual (one person) bringing forth testimony, wisdom, and witness to another (second person).  So today I would like to recommend a devotional.  A blog post that will have you readin and re-reading, digger deeper into the Word, and loving all that God has done for us!  So without further ado here is the link!!

http://seewalds.com/why-the-seewalds-need-the-gospel/

I hope that this invigorates you and spurs you on in a direction of more purposeful living for 2015, like it has for me!!

Also if you want to see our digital Christmas Card, check out our YouTube channel for this vlog;  


Love, The Spencer's 

Wednesday, December 10, 2014

Tis' the Season for Excitement

As Christmas approaches I always feel an awe and general excitement that doesn't run out, no matter how tough the day is, and for that I am so very grateful.  This is the season that it is easiest to remember Jesus coming into this world and how from the very moment of his birth the world was forever changed, so that no matter what happens on this earth, I will have a home eternally in his kingdom in Heaven!  He has a room ready for me right now and I can sense it in the air and feel it in my bones; that this body is not mine but His and therefore, through faith, I will return to Him!  Isn't that so exciting?

In knowing this it is also fitting that this month seems to be the biggest month of my own self-reflection and assessment.  Am I the person whom I want to be?  Do others see the real me when I am out and about?  Or do I come across negatively?  Do I carry myself and make decisions based on who God created me to be or am I letting the worldly challenges weigh me down and make me into someone that I am not?  How can I be a better me?

All of those questions have answers.  Answers of where I have fallen short, failed miserably, done my very best, or just slid by.

I am a writer, someone who journals, and a planner.  Thus planners are also a very big part of my end of the year thinking.  It is time for me to end the planner of one year, assess my needs for my planner for next year, and make the plunge.  I have used so many different types of planners over the years, from school planners, to mom planners, a simple calendar, a blank composition book, to a self created filofax insert with washi tape and all the trimmings.  I have even used a scrapbook with Calendar pages as my planner for one year!

With everything that happened this year my planner was not used once and I find myself looking back and wondering what did I do, did I accomplish what I wanted to?  Did I make progress, or meet goals, or help others?  I have no physical proof other than my limited memories and a notebook of lists some with check marks next to them and some items staring me down.

I know that in the past year I was there when it counted for many of my friends.  I know that I was absent for many months as I wrapped my imaginary wings around my chickies and just loved them through all of the loss and hurt from this year.  I know that we as a family have made great strides in learning what really matters and who is really a friend.  Who is really going to be there for you when it counts.  And we have learned that even if someone isn't a true friend to us, that doesn't mean that we cannot be a true friend to them.  And that even if it does hurt when we feel alone, we are never truly alone and that we always have the choice to look on the sunny side of life.  

We have also learned that the love of strangers is surprisingly strong and sometimes more powerful than the love that comes with all of the emotional and timely demands of being a close friend or family member.

So even though this year we lost everything earthly and I learned to live simply (without a planner) with just a few lists of to-do's and constantly working on the big list of needs/wants, I also strengthened my case and reassured myself that yes, yes I do need a planner!  Because without one, I am forgetful, a hermit, and have very limited focus.

Since October I have been watching youtube videos, reading blogs, and scouring the internet for the perfect planner.  And I just can't seem to find ONE that will help with all areas that must be planned and organized.

I have the perfect planner in my head and if I had the skills and the software I would create the perfect planner for me and honestly I think that it would be helpful for others as well because it is different from those that I have seen.  However, the cost to do that and the time it would take to learn the software, create the planner, and then make multiples of them....well it is just not something I can do at this point in my life.  So I continued to search and I came back with Three options.

The problem is who wants to use three separate planners, or even two?  I would have one for scheduling.  Another planner for meal planning, fitness, and health.  And a third for reaching goals and self assessment/betterment.

Would I really look at all three of those and actually put the work into them?  Especially, noting that I also journal, do regular Bible studies, and have to do lesson plans for Avagrace, and lesson/activity plans for the other kiddos when they are out of school.

I was about to give up and just go back to my composition book full of lists and my family binder (which is a completely different post all together) but then I came across an Etsy shop called Plum Paper Designs.  In their shop they have a family planner that seems like it would be perfect however I would still need two.  In the family planner you have so many options for customization including 7 line items for each day in a vertical weekly format.  I would use one for meal planning, work outs of the day, calorie intake, and grocery shopping, and another for everything else.


                                            I just love this owl design, and I can change the color scheme!
https://www.etsy.com/shop/PlumPaperDesigns
However, the Erin Condren planner that is a bit more expensive seems to be significantly more durable which is very important considering I carry this thing everywhere for a year.  The draw back is that it would not be as specific (although she offers customized stickers that would be a substitute for the custom line item) but I would still need a second planer from Plum Paper Designs for the Health/Meals/Fitness side of things.  After all, fitness and health is going to be a MAJOR focus of 2015 for me.  The good thing about getting one of each is that I could compare the two and see which one was really my style.  And it would be a helpful blog post and youtube vlog.

                                             I love kaleidoscopes and this cover reminds me of them!

Click HERE to register with Erin Condren and SAVE $10 on your first order!

However, I still have Filofax binders that can be used over and over again as long as you get new inserts.  Which is something that is very easy to find in many fabulous Etsy stores.  I could simply get a Meal planning, Fitness, and Health themed insert PDF for my A5 Filofax which are very inexpensive the only downfall is you have to print them yourself or pay to have them printed somewhere else.  If I did that I would probably use that in conjunction with the Erin Condren planner due to the durability of it.

However all of this is leaving out those really neat question and answer tools in the Goal and Self Assessment Planners from Amazon!  There were two and they are called "The inner guide" and "Tools4Wisdom" planners.  But I am sure that pinterest has tons of those types of pages that I could easily print and work off of for free.

So I was talking to my husband (who is currently TDY out of state) and he came up with a fabulous solution.  "Why don't you get a planner or two for your Christmas gift since they are kind of pricey and you love them so much."  This will eliminate some of the guilt I feel for spending more money on a planner than just buying a simple day/week planner at walmart for under $20.

So,  Less Buyers guilt and more productivity.  Plus I will be able to show you how I use them and why they are so vital to my life.  And I can also share with you my family Binder aka My Brain.

But before I take the plunge, I wanted to write it all out, share my bit of crazy, and ask you to share the planner in your life!  And because this is such an off the wall post (just a lot of thinking out loud) I wanted to offer giveaway just to get people talking a bit more.  So, if you share your favorite planner, or what you use as a planner I will pick a random winner to receive a goody bag of planner stickers and accessories that I use in my planner.  (I will order your goodies when I order mine in the next few weeks).  So, share this post with all your planner loving friends and I will announce a winner next Wednesday.  That gives everyone one week to share their tips and share this post.  That is one entry for sharing your loved planner and a second entry when you post again saying that you have shared this blog on pinterest/facebook/twitter/etc.  (Limit 2 entry's per person)

The more comments I get the better the giveaway will be!  It has been far too long since I have done a giveaway anyway!


Friday, October 17, 2014

Avacakes "Life List"


What is a "life list"?  Well it is a bucket list for a mom who can't stand the title of bucket list anymore.  You see over the years we have always made a bucket list for each holiday or season and we would do this together taking turns in a circle to make sure that everyone was heard.  I would put initials by each addition so that we could try to do as many special things as possible.  They would be as simple as baking cookies or as complex as camping (something we have yet to get all the supplies for to do and yet each summer that wish comes up!  I am glad that our children have faith in us that someday we will accomplish that experience!!!  

So when Avagrace's nurses and doctors started talking about "last chapter" and "nothing more that we could do from here" she, by her own initiative got her magna doodle and started writing and drawing pictures of things she wants to do.  One of the items is particularly big and will be sent through to make a wish. Then there are some she has accomplished!!  Meet Kevin Durant and Russel Westbrook and watch the NBA Thunder play.  These were all HUGE in my mind.  And yet on one occasion Kevin Durant walked right up behind us and stopped to say hello and take a picture!  


Then we had the awesome miracle of having the NBA Thunder come to our new post-house fire school dostrict AND being referred for the court side ANDICAP SEATS!  You see with all tog the flashing lights at a traditional thunder game a pre-season scrimmage was really our only option and prayer was the only thing that got us to this game and to meet KD!  Then, when the game was done something even more miraculous happened, Russell Westbrook came over and said "hi Avagrace how are you doing?, then he said "hey Big Bro" and gave Aidan (who was sitting two rows higher and to the right) a bracelet and a hand shake!   So what is next and what seems impossible at this point?  

Her biggest wish aside from her top secret Make A Wish "wish", is that Avagrace wants to go to Disneyland California for Epilepsy Awareness Day with the #Shaytards.  She wants to meet the kids and hang out with princesstard, She also wants to meet the mom of Chelsea Hutchinson, and other people that we have only known and loved on the inter web in regards to epilepsy!  But she wants to be able to go with the Shaytards whom have nothing to do with Epilepsy Awareness and everything to do with her favorite VLOGGING family aside from ours.  She wants to be able to go to the park with them, blog to raise awareness, go to the beach with them afterwards where they have filmed soany times before.  She wants to meet their whole family and go to their favorite Italian restaurant that sings.  Our family loves this family and we would all enjoy some time in fellowship with them!  A true Shaytards style tour to raise awareness!  But it doesn't stop there...Avagrace is full of wishes and sh wants to meet aunt Carlee and Aunt Kaylee, she wants to vlog to raise awareness.  

Miss Avacake also wants to meet another family that we love.  We have met them before, many years ago but over the years and seizures she has forgotten , so she wants to meet them again and actually live a day in the life of ....   We are going to focus on what we can do and also one big dream at a time and right now, this time sensitive dream is our focus :-)

I never thought the Thunder dreams would be marked off her list!  And yet they came in a three part fashion!  God surely knows how to love and encourage us and our kids in ways we never thought possible!!!

She has simple goals too, like go to the zoo and get to see everything in one day without seizures sending her home, putting a puzzle together with Grammy, eating cheesecake with Aunt Steffie, having her cousins over to our house when it is all done being fixed, among others.  

Do you want to know  some other things on her Life List?  Well stay tuned to find out!!


Tuesday, August 26, 2014

A Bedtime Story to My Chillies/Children/Swanlings :-)

http://www.gofundme.com/Avacake

Once upon a time there were five young swans.  They lived together with their parents in a land far from the rest of their family.  This was sad for them because they had a lot of cousins, aunts, uncles, and grand parents that loved them so very much.  These little cygnets, that is the official name of young swans, even had a great-great grandmother.  You see, swans live together in forever families that never separate or move away.  Yet, this family was special.  Their father flew in the royal swan force and that is why they moved so very far away, and this made their father and the entire family very proud to serve the others of their land.

During their time in Okla-nest-a the five little swans grew in stature, wisdom, and grace as they were given many trials that most swans did not experience even once throughout their entire life, and yet these five small swans were living through tremendous trial after tremendous trial.  They also always new that there was another trial waiting just beyond the rivers bend.

To give you an idea these sweet birds went through a nest fire where they lost everything even their first feather print.  They also were in a flying accident.  You see these Geese were not paying attention and crashed right into their behinds!  Then two out of three of their grandmothers died.  And if that wasn't enough there were many more struggles that they had to navigate through in just a few short months.

However, the greatest of these storms was watching their oldest sister and second to oldest sibling struggle through a condition that made her body do things that she did not have any control over.  Sometimes she would just stop and stare, sometimes she would shake, and other times she would just be too tired to leave the nest for lessons or play.  Mama swan stayed with her during the others lessons so that she could learn as much as possible, but everyone hoped that a miracle would happen so that biggest sister would be able to do what everyone else can do without having to work so hard to accomplish it.

If you asked biggest sister what the biggest challenge would she would say that there was not enough time in the day to give everyone enough love.  You see, she did not see her challenge as troublesome or sad.  She saw it as a reason to work harder, dream bigger, and show love to everyone that she met.

One day biggest sister had to have a surgery.  Mama took her to the hospital to meet the avian veterinarian.  It was there that they made a plan to try to fix some of biggest sisters challenges.  When biggest sister came home from the hospital she seemed to be the same brave girl, but there were nurses with her.  They talked to the family and made a plan to include nurses in the care of biggest sister.  They also shared somethings that were scary to big brother and the littles.  They said that biggest sister might fly to heaven before the next Christmas.  Everyone was silent for a few minutes.  Then middle cygnet and second girl of the family said, "Christmas is because of Jesus and only Jesus can say when someone fly's to heaven."  A big sigh of relief filled the room as all took in the power of what such a young swan said.  "You are absolutely correct" said mama.

One would think that this would be enough of a challenge to handle.  But those cygnets were tried, tested, stretched, and bent.  And through it all they knew that it was not by accident that so many "accidents" and catastrophe's were happening.  Nope, they were happening so that the Seven Swans could grow in faith and stick even closer together than ever before!  The 7 swans would always be known as 7.  Uniquely individual and yet together as one.  No matter what life threw at them and no matter who went to heaven first... because they would all meet there someday, and God put them together for a mighty reason.  Even if the reasons were yet unknown to them, There is no accident in life.  Only divine lessons meant to fulfill our creators purpose in us.

http://www.gofundme.com/Avacake

Saturday, June 21, 2014

Trying ...

A Car is an investment.  It takes you where you need to go.  It protects you on your journey.  It houses years of memories, of both places been and songs sung.  Babies facing rear, and children now without a car seat.  Moving across country, and traveling back to visit.  Carrying a baby home for the very first time and trusting that this precious bundle will be safe.  Driving to doctors all over the country to bring hope, healing, or just some help to one special unique and wonderfully made (now) 10 year old.

A Car is money flushed down the toilet.  Our insurance claims that our fully paid off investment is worth not even half of the selling price of the same make, model, year, mileage on the market.  Our insurance of course does not cover what we have spent on said car like they would a house and it does not even cover the amount of insurance we have paid over the lifetime of our car!

And yet, we are in a rental van that does not even fit our family, I do not think anything other than a Toyota Sienna would, but perhaps I am bias and there are others out there that would fit four full sized car seats and a wheelchair?  And the rental has expired.  We need to somehow buy a new vehicle before our insurance has even settled on a price that they will pay us.  But still we must press on and either A. Go in to debt which we firmly believe we should not do or B. start paying for the rental out of pocket until the insurance settles.

Fortunately, we have decided to get a lawyer involved and she is very kind, working very hard for us, and also went above and beyond to help us look for a vehicle.

We have an appointment in the morning to look at a used Honda Odyssey that is an o6 I believe, and I am thankful for her kindness and hard work.  It is so difficult to find a vehicle that has 8 full seats and has room for a wheelchair.  So many vehicles have 'jump seats' or about 2 inches of leg room for the back row.  And not enough trunk space for a folded down wheelchair, oxygen, and groceries when we have to go grocery shopping when Brendan is at work or deployed and all five kids are with me.  *You should see my packing skills!  But you will also know why I am (as much as possible) an Amazon grocery shopper :-)

You know, with the house fire, we at least know that our home will be put back together in a similar fashion.  But our van is gone.  Our first car that we owned together.  The first vehicle for most of my babies.  The first new car that we ever owned (and likely the last unless we can pay for one in cash someday).  And I am so sad.  Some may think that it is so silly but we were Toyota Strong!  We loved our van.  The "SS Sterling" was his name and he took us on a wonderful journey for nearly a decade. I cannot believe how much I miss a hunk of metal with wheels, but I do.  Toyota, you did our family good, if only insurance would see the value in someones car when someone else carelessly destroys it.  And just in case you missed my last post.  I am extremely beyond words thankful for the safety that GOD and this van provided for us.  I know that it was God alone.  Yet I also believe and know that God lead us to that van and that company and I am very thankful for the workmanship that went into our van to keep us safe!
Our "S.S. Sterling" :-/



Here you can see that the door could not even open because the back had been pushed out to permanently stop the exit of Avagrace.  Thank GOD that she did not seize and her special car seat (that I actually did not appreciate enough) did its job better than I ever could have expected!

This is the most horrifying picture to me.  My sweet little girls (ages 6 and 7 at the time of the accident were sitting here.  Less than one hand length away from their sweet heads was the trunk and a very sharp metal casing that kept the frame of the door and window in place.  They were covered in glass but saved from what could have been so much worse.  





Saturday, June 7, 2014

One Might Think...

One might think that a child on Hospice is enough to deal with, one might think that a house fire is more than enough for that same family to deal with, but it doesn't stop there.  Yes, we lost our birds in the fire, and yes we saved our dogs only to loose our beloved Felicity to breast cancer a few weeks later.  Then after living in a wonderful hotel for a little over two months we moved into our rental house.  The following day Brendan was driving me to the airport so that I could fly home to be with my family for a few days and restock some of the items we lost.  (After all we are a military family half a country away from everyone).  But that trip was not meant to be that day because in the middle of rush hour traffic we were brought to a rather sudden stop safely with a car and a half length in front of us only to be hit from behind by a 19 year old who was on her cell phone and not paying attention to the road.  It was a terrible learning experience for her and a traumatic event that still causes our kids to cry in the car, have nightmares, fear sleep, and have headaches and other aches and pains that they did not have prior to their concussions, whiplash, bruises, contusions, and scrapes.

However, our entire back window was smashed into hundreds if not thousands of pieces and our two littlest girls were covered with glass and yet they did not have any scratches from the glass.  Also, the back of the van was bent in so far that it was less than one of my hand lengths from the back of their necks, and they are still alive!

Gods mercies are new each day!!

And yet we are now faced with yet another crisis.  Not only did we go through that very traumatic experience but we have also lost our completely paid off van that fit everyone in our family perfectly and safely and although it was not a wheelchair van, Avagrace's wheelchair fit when it was folded up in the trunk of the van.

So what is this insurance offering?  Some ridiculously low value.  Even when looking on Carmax at vehicles that had the same mileage and status of our car meaning "good/average/new etc" the cars are priced at least 3-5k above what the insurance is offering us.

It is evident with the many misdiagnosis and botched medical events that we are not a family that believes in suing, however, the need for a lawyer to at lest speak legalize and be in our corner as we navigate this very traumatic accident.

It was my hope that my children would never experience an accident in their life.  And this was not just a simple fender bender.  I praise God for his mercies and his love that surrounded us then and surrounds us now and I pray that his provisions will come through because debt is not something that we believe in either.  I know that sometimes (especially with medical bills there is no choice) and to have a working and safe vehicle to transport our family also is something we cannot live without, but please pray along with us that God will show up in a big way and we can manage this in a way that is pleasing and honoring to him!

Thank you for your love and prayers, my torn AC muscle (in my shoulder), Violets concussion headaches, and the swelling in Aidan's neck are the three most pressing accident related prayer requests.  (And that insurance will get their act together and replace Avagrace's special needs carseat. :-)

Thursday, May 8, 2014

Why we were away.

My birthday is March 25th.  This year, my birthday brought a change that we never expected.  We had a house fire that took everything.  Baby pictures and blankets, photos from WW1 and 2.  Toys from my childhood, and my beloved library that I have been so proud of for my children.  I loved our books, and how they had messages written in the covers from whom they came from and when and to whom they were intended for.  My wedding dress, our wedding rings.  While we were able to save some things like costume jewelry, Big Baby for Violet (she has been Violets favorite toy since she was not quite two).  We were able to find a few sweet pieces of furniture, like the doll bed my grandfather made for me when I was in elementary school, and the rocking chair that has been in our family for longer than I know.  But everything else, all of our clothes, all of our memories, even doors and walls are gone.  The shell of our home is in great hands though.  We have fabulous contractors and we know that it will be perfect when it is fixed.

Since March 25th we have been living in a hotel.  In the fire we lost our birds and just after Easter we lost our dachshunds who were taken care of so lovingly by one of our best friends.  Unfortunately Felicity had cancer and because the hotel had a limit of one dog, before we learned the fait of felicity we had given Louie to a new home.  However, we firmly believe that God has everything in control and that everything, good or bad, happens for a reason.  And to be quite honest we find more peace in this fact than the security we felt in our stuff.

We were ever so grateful for our neighbors that came out to hug us, give us water, snacks, chairs to sit in.  Our friends that protected our children from the scene of the fire.  And again, our neighbors who tried to protect our remaining belongings  from the looters that thought they could come into our home and take whatever they wanted inside or outside.

We have learned a most valuable lesson that I would like to share with every single person whom has medical equipment in their home.  PLEASE increase your personal property insurance to cover the cost of the equipment that you own or rent and multiply that total by 2.  We did not do that and so all of Gracies's thousands and thousands of dollars of equipment from her helmets to her sleep safe bed, all need to be replaced out of our personal property insurance, not medical or any other insurance.  So, that being said, we have had many many people praying, sending gift cards, and doing whatever they can to help us feel the support and love from home as we live so many states away.  We have also had love and support from some of our friends here as well.  We have so many things to be grateful for.













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."

Saturday, February 8, 2014

Home Again, Home Again, Jiggity Jig

This is what the button looks
like from a side view before
it is inserted.
Yup, you read that correctly, we are home!  What a wonderful word that is!  We are home after a very eventful 8 days in Texas.  This might sound a bit crazy but coming home was bitter sweet.  You see, the doctors and nurses in Texas have been so integral to Gracies care.  While we have been seeing them for four years we haven't really gotten to know them or spent any great amount of time with them until this past fall.  Unfortunately they were always our second opinion.  So we would be in their office every 6 months and a few times here and there when stuff would get crazy and I needed the voice of wisdom.  But since September we have been there every single month sometimes multiple times a month.  Not only have they become like a family away from home, but they have gone above and beyond each and every time to show Gracie how much they love her and how awesome she is!  They have held my hand and helped me in the new stages of Gracies condition and they have helped me to remember that I am Gracie's best expert.  That I am fully capable of taking care of her and that I am doing what is best for her and our family by simply praying for God's peace and following that peace.  When I am in Ft. Worth I am surrounded by people who know the complexities and anomalies in Gracies conditions whatever they may be exactly.  I am surrounded by people who want to help her and do what is best for her and that will spend all day calling several different offices just to get the right things at the right times!


A Childrens Hospital
TOTALLY dedicated
to making kids smile!
But in leaving I am leaving the doctors and nurses that have helped me to get use to the new equipment and pieces of my daughters body that were not there before the surgery.  She now has a G-tube and although she has had one before it is not the same type of G-Tube.  Instead of the Mic-Key button she has the MicroVasive PEG button this go round
.

Loop Recorder and the Process 
She also has a Loop recorder above her heart that comes with two hand held devices that help to download or lock info in with a time stamp.  This will allow us to monitor her heart and watch for any abnormalities that are not consistent with seizure activity or her brain slowing down.  This is the best way to eliminate any possibilities of heart defects/malfunctions that could be secondary from her neurological issues and therefore we can help her heart.  If her heart is fine and it is stopping and going to fast and too slow and not remaining steady, then we will know that it is happening because of her irregular brain activity.  I have left my bubble of security.  Both from the hospital and the support that comes from being in the Ronald McDonald House surrounded by parents who are going through their first hospital stay with a specialist or things that are harder and far more long-term (in the hospital) than I am.  It is this mash up insta-family-ish-community that rejoices when someone gets to go home and celebrates the small miles stones like being able to sit up to the major issues like one of our friends sons was intubated for 29 or so days and then despite having the possibility of being put on ECMO he was able to go through with extubation!!  And that was miraculous!  These mama's and daddy's that were away from their babies for a nap or a meal or a shower while their children were in very serious-very long-term stays at the Ft. Worth RMDH all loved on Gracie, encouraged her, played with her, listened to her, and prayed over her when she was struggling.  We were so grateful to be in such a calm and loving community of people who get it in their own way.

But coming home, well that is home!  It is where my sweet family is.  That sweet family that God has so graciously given me even though I feel so unworthy to be the mom of FIVE kids!!  Let alone a military wife with my current revolutionary sentiments.  It was so adorable to surprise my kids and to be embraced by each at the same time, to have one melt down into a puddle of tears just because they missed me so much!  To hear them talk about how much they missed the little things that I do for them each day.  It made me feel like I was the best mom in the world and I am so grateful for the reminder that I am valuable to them!!

On my drive home I drove past a beautiful cemetery that is where my sweet niece-by-choice was buried just a few weeks ago.  In her very short time on this earth I learned more about love, life, and death than I have ever learned in my 31 years.  It made me realize some of the things that I want to do if I do have to face this challenge with Avagrace.  It also made me realize how lucky I am to have such wonderful best friends and how lucky I was to be able to be there with them during such a private intimate time!  But most importantly it made me realize how close heaven really is and that I have babies in heaven of my own playing with Sweet Gabriella, Princess Ellie-Kate who will forever teach me the meaning of communication and the power of overcoming all obstacles to command center stage and have her crowed turned to putty in her hands (I would let her pull every hair out of my head just to hear her giggle and then hug me before doing it again), Corbin on of the happiest babies I have ever had the pleasure of snuggling and although I only got to hold him once it will be a moment etched in my mind forever, Roland the very first sweet baby funeral I ever attended to my life long friend and big sister for a few years who said this very wise word the day of the funeral "everybody always wants their baby to stay a baby forever, well now I will have my baby forever in heaven!"  {Amen, what is heaven if not with babies!!}, and then there is India this beautiful young lady who was so beautiful that I must say it twice, she was so bright, artistic, and the jewel of her mother's eye and although I never got to meet her, I followed her life very closely on Facebook(stalker..what?).  Her mom is such a positive person and a great encouragement and I have loved to watch the way that she and her girl loved each other so deeply.  And really there are so many more kiddos that this blog could be a roll call.  And that is because I have chosen to love and open up my world to the special needs community and to be involved whenever I can to help and love on others.  Why you ask?  Well for two reasons.  First, I am selfish.  I love it and if I am able to bring someone something to brighten their day then I am on fire!  I often wish that I could win the lottery (that I don't play) for my family of course but for many many many others!  The second reason is because I want to honor My Savior who has loved me, protected me, and given far more to me than I would ever deserve.  But even though I know the facts about the Bible and I believe in the truths…I never really grasped those truths until I was able to be there for Gabriella's birth and then passing.  To hold her and kiss her sweet face.  To love on her and her parents and her brothers and then her sister at the funeral.  This is when I saw how beautiful and peaceful such a horribly sad thing can be.  Nobody wants to say goodbye to a loved one, and absolutely no person in our culture would want to see a child suffer or die.  Yet through being present during Gabriella's short life, I learned more about life than I have ever learned before.  I have learned to rekindle my hope (which use to be a word that I have a love/hate relationship with, I can't tell you how many times I have argued with my Father in Heaven over "what in the world is the point of Hope!")  Well I will say this.  To me, HOPE is not about Hopes within this life, it is that we DO HAVE HOPE because WE DO HAVE HEAVEN and we do get to go and be with HIM there!  And that is why my Hope is in the Lord!  And to think that I did not know that, I mean REALLY KNOW THAT until I met Gabriella!  

Coming home and knowing that I have so many loved ones here in Oklahoma made me feel so connected to this state and to the quick trip to Texas that it has made me question the trip to Colorado in many new ways.  The challenges of finding new doctors that like/love/care enough to treat your child like an individual and not a chart or a paycheck is harder than you think.  This doesn't mean I am backing out…I am just sharing my heart right now and how I hope so deeply that Oklahoma and the FEDS legalize this for the entire country!  If any president could do it, IT WOULD SURELY BE HE.

But, if we do have to go back to Texas again soon, at least we know we will meet some new friends like the ones that we have met this time!  Thank you for loving my daughter!  You gave her such cheer and aided in her healing so much!








Thursday, February 6, 2014

The Best Laid Plans, Often Go Awry!

When planning our current trip to Avagraces' Specialist for these procedures, many people were involved to try to make this the safest, most efficient plan to do what was needed with the least amount of hospital time as possible.  Cold and Flu season is a big deal for anyone, but for a child with major medical conditions it is a nightmare.  For Gracie, anytime she has a germ of any kind (UTI, Sinus infection, to an infected wound) she seizes more and struggles to maintain simple functions.  So doing surgery during the most virus-infected season is always risky.  But it had to happen and it had to happen when it did.
Nurse Amy!

The first person that was on the front lines of scheduling, battling insurance red tape, coordinating three separate procedure rooms and surgery teams, and making sure all of the doctors from both states are on the same page is our nurse in Neurology, Amy.  Amy is our Neurologists nurse and she is a true gem and I am so thankful for her.  Along with Amy, our pediatricians referral specialist Penny worked long hours to get tricare and medicaid to do what they needed to do.  I am SO grateful for these ladies.  From there I was in touch with another gem in the cardiologists office who not only helped me ahead of time but also got me through the eight hours that Avagrace was intubated and under the general anesthesia for the duration of her three procedures.  She literally sat with me during the heart monitor surgery and walked me through all that I needed to do with the loop recorder and with her care afterwards.

Coming into this we didn't know if we would get to all three procedures.  We knew that we would prioritize them from most important to least important but we all were confident in her ability to make it through.  After all, her more major surgery in November (the VNS removal) went better than anticipated, was done in half the anticipated time and did not require nearly as much pain meds or ICU time as we had thought that it would.  So this time, with the three procedures being typical outpatient surgeries we knew that there is not such thing as outpatient with her, but we didn't think we would stay for more than a night after surgery and we all really wanted to make it through all three procedures because this is the safest and best option for Avacake.

So, we got through all three procedures!  We had the 3T MRI, the G-button insertion, and the insertion of the loop recorder.

Unfortunately this was a lot harder on Gracie than we thought that it would be, but we are all still so grateful that so many people worked extra hard to get it all done in one long day so that she can heal and get back into therapy; instead of being operated on multiple times thus extending healing with regression, with healing, and more regression, and so on.

So, how did surgery go?  I am so glad that you asked!    It surprisingly went a little longer than anticipated which usually never happens, and while she at first came off of the vent very well and was in recovery for about an hour before her stats started to drop and the seizures started to pick up, she had a major reaction to coming off of the anesthesia and just seized like crazy and thus needed to be intubated again.  This was a first for me to witness except during surgery when all goes so smoothly.  IT WAS TERRIFYING…  Fortunately she didn't have to be on the vent very long but it was really hard to see her struggling to breathe, struggling with pain, and struggling to handle the surgery on her tummy.  Nobody really knows why this was so hard on her.  Especially when she has been so tough and other surgeries were harder than this one and yet so well.  It could have been the fact that we did three separate procedures keeping her under general anesthesia the entire time, but it could be that she has been struggling more as of late.  It could also be that her body enjoyed the help in breathing and so she was quick to be what the docs call "vent dependent."
"Dress Up" is GREAT PT/OT

After surgery and after we got her stable in breathing we had major problems with pain.  In the past she has only struggled with pain for the first day or two.  However, ever time she got to the end of the pain meds she would start to stiffen up and breathe very shallowly hence causing hyper ventilating which is one of her seizure triggers.  So her seizures were way above baseline and were very difficult because they started with low O2.  So, we had to slowly ween her off of the pain meds and get her into PT immediately.  This way she could practice moving her stomach muscles in a calm purposeful way, instead of allowing her to be stiff and rigid and scared of breathing deeply or moving her abdomen.  This was very hard at first but it quickly became a lot of fun as our girl is very competitive and wanted to meet all her goals and get her rewards!  She did amazing and although it took longer than we expected, and I miss my husband, my kids, my bed, my home etc etc etc….but this is not about me.  This is about my beautiful daughter who has proven time and time again that she is a fighter, and my hero.  She shows me everyday what it means to grab this life and make it your own!

She has recently fallen in love with photography.  She has a kodak kids digital camera and took pictures of everything and every where.  It was so precious.  She was a cheerful addition to the Ronald McDonald house, which is where we stayed several days of our stay because it was safer their than in the hospital that was especially full of kids with viruses and germs as this is definitely sick season.  So tonight on our final night int he RMDH there was a precious cheer squad that came to make dinner for the whole house.  We had some of the most delicious lasagna and Gracie got to meet a cheerleader whom also has seizures.  She has a mild form of epilepsy and mainly has seizures at night.  But she impressed Gracie so much and she was so happy to have a squad full of hugs from girls who had a heart to serve.  Lastly, before we went to bed tonight she made sure to say goodbye to every one of her "friends" that she met in the house this time, wether they talked for a moment or every day.

The two highlights from this trip for Gracie have been that she got to see the dogs that she loves that come to the RMDH for pet therapy (the handler of the Dachshund Abby remembered us from our November Surgery stay).  She loves them so much!  And, she got to take pictures of so many things that she loves.  It was so cute and so great to see her loving this new hobby!
 I wil try to share more pics on her Facebook page!  And perhaps we will do a blog with the pictures that she took, and get her perspective on what she has been through.

www.facebook.com/avacake  Thank you all!