Preparations and Thank You's

After I came home from Texas and started having all of my chronically-ill-child PTS, I got messed up emotionally, but since starting a low does of an anxiety medication about a year ago, I found that orderliness helps me immensely.  Not OCD orderliness, but orderliness that offers a sense of preparedness.  I know this might sound stupid or even obvious, but it helps.  When you have no control over the big things, the little things make a big difference.  I am sending my son off to surgery in November with no idea of what state he might come out of it in or how long we may be in the hospital.  That's a big. damn. deal.  BIG.  When Clayton and I leave home, we have no idea when we're coming back...and it's not because we're doing something fun like backpacking through Europe.  And I can't change that, I can't control it, but I can prepare for the various scenarios and that makes me feel so much better about everything.  So I have been thinking about that the past few weeks and now I am starting to try and get things in order.  I have to get the animals in order, the house in order, finances in order and all of the little things that go into those and then I have to get everything in order that I need to take with me or have lined up down there like the Ronald McDonald House, etc.  Now, my point is not that all this preparation is a pain in my butt...quite the opposite.  All this preparations helps me focus on what I can do and not on the much larger things that I can't change.  All of which results in keeping my anxiety under check.
Now a massive part of this is preparing financially.  For this I owe three groups: Angel Ride, Jensen's Heart of Gold and The Clayton Benefit Barrel Race put on by my sister and her family.  After making the lifestyle changes we made over the past few years and the financial support of these three organizations, we are in the best place with medical expenses that we have been in since 2011 when Clayton got Cancer.  Something that would not have been possible without their financial support.  Heading into Orlando, Clayton's medical debt is finally manageable.  Now, that's not to say that we are out of the woods medically/financially.  Unfortunately, we have a revolving door of medical bills. But I cannot stress how good it feels to be were we are now thanks to those three groups.  The timing could not be better either since I have no idea what will be in store for us financially in Orlando.  Going into that situation feeling so unburdened is a huge gift.  There truly are no words sufficient to express my gratitude.

So THANK YOU to all of those involved in the groups that help to support Clayton and to all of the volunteers and participants!

6 Years

Honestly, we both nearly forgot.  We don't make a big deal out of anniversaries.  10 years, 20 years and we'll make a bigger deal.  But right now it's just another day for the most part.

I did get these though...just my casual-fall style too!

We are definitely wiser, but a little less um, shall we say healthy..  

Saying Goodbye

Wayne

Wayne "PawPaw"

12-26-1929 to 10-15-16

My sweet PawPaw passed in the early morning hours Saturday.  I'm so thankful his time in such a disabled state physically was limited and that his final days were spent at home surrounded by family.  I love the picture above because his expression completely sums up the man I knew.  That is my PawPaw holding his first great grandbaby.  He  literally looks like the proudest PawPaw ever in this photo.  And that's how he treated us always. He never judged us despite our imperfections, he just loved us and treated us like we were the coolest things ever.  I said that to my Granny the other day and she said, "Because that's what he thought."

October Inspiration

Old Charm

I love old things.  Things with history and meaning.  I got two such things this week. First is this table from George's parents. (I know it doesn't look like much)

And while I don't know it's whole history, it's age shows.  Which I love.  I love the time weathered finish and the scuffs on the top.  I love the simplicity yet classic character of its lines.  I love that it tells a story.  I love it so much, I even want to one day find one like it for the other side of the bed.  

I'm sure it sounds silly, but this little vintage wash basin stand reminds me of a simpler time and a simpler way of living.  One with more dirt and less technology.  One with family farms and hard work.

A time that didn't encourage laziness, but rather encouraged life skills.  Skills that didn't involve computers and social media, but rather involved people and physical labor and craftsmanship.  This sweet little table fully embodies why I appreciate old things...they celebrate the things we've learned and the things we need to cling to.

Which brings me to the next old item that fell into my possession this week...

This screen door was on the house my family built for 30 years.  It came down this weekend as my mom and stepdad redid their back porch and was passed down to me when I learned of its whole history.  Not only did it hang on the house I grew up in built by my family, but before that it hung on my grandparents' home where they raised my dad, his brothers and sister.  Which was a home they built themselves as they lived above the garage.  So lots of obvious history with this door.  Which is why I love the idea of doing a little rehab on it and hanging it on my home now. :)

Speaking of my grandparents, my PawPaw is now home on hospice which fills my heart with joy knowing he's back at home and not in a hospital.  Isn't that what most of us wish for, peaceful final days at home?  It was hard though to walk in his room and see the hospital bed and hear the oxygen machine in the background.  The difference a week and a half can make is crazy.

This is my father's father.  Growing up, I had my PawPaw and my dad and my Poppy and my Stepdad.  So I had multiple male figures, but my PawPaw always held a special place.  For one reason my dad did not live nearby most of my childhood and when I would see him, my PawPaw was usually (almost always because we would stay at my PawPaw's house when my dad came in town) around too.  And since my PawPaw lived five minutes down the road, I saw him even more than I saw my dad.  But mostly, above all else, my PawPaw is this symbol of peace for me.  Through my parents hateful divorce, not understanding why my dad wasn't around more, my sister's rebellious years, my rebellious years, coming home from college, getting pregnant with Clayton and every hard moment after; my PawPaw has remained this beacon of peace.  I could walk in his house and see his infectious smile as I was greeted with his classic "How do you do?" And for at least a little while, nothing else mattered. He never judged, he just loved.  

He is one of the only people I know, if not the only person, whom no one has anything negative to say about him ever.  Everybody likes him.  I have an Aunt with children from a previous marriage who has been in our family forever and told me the other day that her child call him the "storybook grandpa".  He is "that" man and it isn't just my bias.  It's just my privilege to be a part of him.  He has always been the role model of all role models.  Hard working, honest, loyal and positive.  He spent his life working hard at the telephone company; loving his family; playing with the grandkids and great-grandbabies; loving my granny; gardening and working his property; building and fixing things; raising chickens; picking satsumas and kumquats and enjoying them with the grandkids on sunny days;  riding the grandkids around in the lawnmower wagon;  taking naps in the middle of the living room floor on hot summer days; showing grandkids how to dig for worms for bait; and always always teasing us.  He is just the rarest kind of man.  He set nearly impossible standards for George :). Playing. George knows very well all about my PawPaw.

I am just so damn lucky to have had role model like him and will always consider that one of the biggest gifts of my life.

Not to say that my stepdad, Poppy and dad aren't loved or admired for their own unique charms, but I think they would all agree my PawPaw is just different than most men...or women for that matter.  All the men in my life are so different from one another.  So VERY different.  But with my PawPaw, it was like he embodied the best of every man I have ever known with little to none of the negatives.  So stinking thankful for his example!

Tribute over.  

Monday Medical: Pyloplasty #2

This is the update I have been waiting for myself... We have dates and a plan.  And even though I have been trying to prepare my folks and George for the risky business involved in this surgery, it still hit me like a ton of bricks when the nurse finally confirmed it.  "It" being a stent exchange with possibility of an open pyloplasty.  So let's take this step-by-step:

- Clayton is tentatively having a stent exchange in November.

- Clayton's stent exchange is for the stent in his ureter that is there to drain his kidney because it can no longer adequately do so (if at all) on its own.  

- We have been doing these stent exchanges for 3 years, but they have become more problematic due to scar tissue and such from his original pyloplasty and particularly from his tumor resection.

- The increased risk with these stent exchanges now prevents us from doing them locally.  The doctor tried and was unsuccessful in March.  Our local urologist referred us to a urologist in Orlando that has previously worked with our local urologist on cases including Clayton's.

- When Clayton went into acute renal failure in Texas it was due to this ureter issue and the urologist there suggested then he may need another pyloplasty.   

- The urologist here bounced around various alternatives and so we have been waiting on the urologist in Orlando to confirm surgery date and his plan.

Which brings us up to speed.  So we will go to Orlando in November and the doctors will attempt a stent exchange, but are preparing to do an open pyloplasty.  A pyloplasty is the same surgery Clayton had as an infant.  It did not go so well the first time so we are hoping for a better outcome this time.  The fact is, if they get a stent exchange successfully and don't do the plyoplasty now, he will still need it later.  The stent exchanges are only a temporary solution.  If you remember, a year and a half ago when Clayton's kidney function began to decline, the doctors were preparing us then for something major.  Well they bought us a little more time and even if they manage to do so again come November, the amount of time they can buy us is limited.  I honestly don't know if I want to get it over with or want to do it a little later on.  I just don't know.  Clayton's original pyloplasty was suppose to have about a week of recovery.  He was in the NICU for two months.  Thankfully, George and I have grown and learned a lot and now clearly see mistakes that were made then and know how to be more aware of issues now and advocate for Clayton as he deserves.  Ultimately though, it is a different time, we are different people, different doctors and different hospital.  George and I are not turning over our child to a surgeon with blind trust.  Rather we will be turning him over to a surgeon whom I have researched, have references for, met, spoken with and ultimately who we chose.  So I feel like our prior experience with this particular surgery serves as a caution and even a tool, but not a reason to be fearful.  I think any fear just comes from the fact that we are finally entering the territory of major kidney surgeries that we have known was coming and what this might mean for our future.

I will let everyone know the surgery date when it is here in November.  So for now if everyone will please pray that whatever route the doctors take come November, that they are able to help Clayton and his sweet kidney in a smooth, uncomplicated way so that he can recover quickly and get home for Christmas.

I also have a second prayer request.  My sweet PawPaw went in the hospital at the end of last week.  The family is going to try and bring him home on hospice once everything is arranged.  This amazing man's life is coming to a close though and I ask that you please pray for peace for his heart and soul during this time.  And please pray for my sweet grandmother too.  They have been married for 62 years.  I can't imagine the pain she is feeling.

I LOVE this picture.  Clayton took it 1 year ago on one of our playdates at Granny and PawPaw's.

Took this picture about a week and a half ago.

Fighting the Flu...Naturally

I was out and about the other day and a woman beside me had a friend walk up to her with a bag of cough drops saying how she had just recovered from the flu the day before, yada-yada.  I couldn't put enough distance between me and them fast enough.  If you have cooties stay home.  And if you have to get out, which happens to most of us, be respectful to others and be mindful of your germs please.

That said, if your like me and want to avoid the flu, here is my tried and true Elderberry Syrup recipe.  I swear by this stuff.  A couple years back Clayton had a confirmed case of the flu and literally coughed in my face constantly while cuddling with me or having me hold him and thanks to this stuff I did not get sick.  Because no, we don't do flu shots.  Bad experiences with flu shots specifically.  

A recap of my stance on vaccines:

Cliff notes version is I believe every vaccine is the same and every person is different and therefore, you can not expect the same results every time.  Scientifically, it doesn't make sense in my opinion.  I do think vaccines are wonderful and am grateful for them, but I completely disagree with the idea of blanket coverage for everyone one except for those with currently compromised immune systems due to things like chemotherapy.  Obviously those people get exemption, but I also believe other people that have a history of sensitivities/reactions to things and have multiple underlying conditions should have the choice to opt out if they feel it is in their best interest without being shunned by doctors or schools or communities.  I feel that if you choose not to have your child vaccinated for idealogical reasons that you should be willing to home school your child not necessarily for the health of others, but also for the health of your child.  I think vaccines have brought our society a long way and we should respect that simple fact.  But we also need to better respect, as a society, that vaccines are not right for everyone.  We also need to, as a society, demand transparency on vaccines starting at the top.  If parents are expected to give their children vaccines, then they should be able to know everything there is to know about that vaccine.  As for Clayton specifically, I do not believe his vaccines before age 3 have anything to do with his autism.  I opt not to give Clayton most vaccines because he has a history of being overly sensitive to things, having poor reactions to things, being immunocompromised and has multiple underlying conditions.  For more on how I feel about vaccines, read HERE.

The purpose of elderberry syrup is to boost the immune system.  Historically, elderberries have been used as a natural medicine with great success.  Elderberries, combined with the other ingredients in this syrup, make for one natural remedy that I have been using for a couple of years and absolutely swear by.  I have also started giving it to Clayton this year.  I give him a half a teaspoon every couple days or so.  I like to be very cautious with him, so I don't yet give him the full teaspoon daily that is suggested.       

  

Elderberry Syrup Recipe:

1/2 cup dried elderberries

2 cups water

3/4 cups raw unfiltered honey

1 tablespoon ground ginger

1 teaspoon ground cinnamon

1/2 teaspoon cloves

In a small pot, combine water, elderberries and spices.  Bring to a boil.  Reduce temperature and allow to simmer, stirring occasionally, until mixture is reduced by half.  Once reduced, strain mixture to separate elderberries from liquid (I like to strain with cheesecloth).  Squeeze excess liquid from elderberries.  Add honey to remaining liquid.  Combine thoroughly and let cool.  Transfer to jar and store in refrigerator.  

Daily dosage up to:

1 teaspoon for children

1/2 tablespoon for adults

                                   

It makes your house smell amazing when you make this syrup!

Stay well!

Medical Monday: Doctors and Disney

Back to Disney and back to doctors come November.  I am still waiting on some specific dates, but I have now been told we will do things a specific week in November.  So we are going to head down and camp at Fort Wilderness, go to a Mickey Holiday Party one night and then do the doctor thing.  That way we can add a little fun in there for Clayton.

As for what we are doing with the doctor?  I hope we are doing a simple stent replacement.  However, we are having to go to Orlando for this because the local urologist could not do the stent exchange without risking complications that our local hospitals can't handle.  So while we hope it is a simple exchange that goes smoothly, we are very aware that we are going to Orlando for this because of the increased risk of complications.  It will definitely be a nerve-racking day because we won't know what is to come until Clayton is back there and sedated and the doctor has a chance to look at things.

Meanwhile, this month we will be doing cancer tests.  So we have a number of things coming up the next couple months.  Hopefully we can wrap things up before December and have a quiet holiday month.

Oh as for why we are staying at Fort Wilderness?  At $60/night for a campsite it is much much less expensive than even a roadside motel...So why not?  Give Clayton a little magic in the midst of the not so fun stuff.  We don't have plans to visit the parks for anything other than the holiday party though.

And now I have to go call Texas to schedule ortho visit for beginning of 2017...

And as a special gift to all here is a random picture of an angel dressed up like goofy getting ready for Halloween!  I say gift because this sweet child's persisting innocence is the coolest, sweetest gift of all and I wish we could share it with everyone more...