Something Yummy For The Graduate

It's official.  Grades are in and George is now a college graduate.  He even finished with a 3.0 GPA.  So we had a little celebratory meal with my Nutter Butter Pie and I thought I would share because it's AWESOME.  And the best part about this recipe is it's versatile so you can easily adapt it to other things like Oreos...or Butterfingers.  Yum.

Rachel's Nutter Butter Pie

What you'll need:

1 package of nutter butter cookies (or cookie of your choice)

3-4 tbsp Peanut butter (if using peanut butter cookies)

3 tbsp butter

1 tbsp vanilla

squirt of honey

8 oz cream cheese (1 package)

16 oz whipped cream (2 tubs)

1 bag mini Reese's cups

For crust:

Combine 3/4 of cookies, 1 tbsp peanut butter and 3 tbsp butter in food processor and process until cookies are fine and ingredients are well combined.  Poor mixture into pie dish and press around to form crust.  Pop in the freezer while you make the filling.

For filling:

Combine room temperature cream cheese, whipped cream, vanilla, squirt of honey and 2-3 tbsp of peanut butter to taste.  In a ziploc, roughly crush remaining cookies to desired size and add to well combined cream cheese and cool whip mixture.  Fold in.

Remove crust from freezer, add filling, spread evenly on top and top with chopped mini Reese's.

Freeze for at least 4 hours.  Let sit at room temp for 30 minutes before eating.  You can store it in the fridge, but I recommend storing it in the freezer.  

Enjoy!

Note:
There are similar recipes out there, but they called for more butter and a lot of additional sugar and I felt like this had plenty of sweetness with the cookies, Reese's, cream cheese and whipped cream, so I trimmed it down as best I could and just added a small squirt of honey.

Speaking With Clayton

Clayton is ridiculously smart.  Waaayyyyyy smarter than anyone ever gives him credit for.  George and I included.  He blows our mind on a regular basis with the things he reveals to us that he understands that we never realized.  George and I are always having to remind ourselves to watch what we say because he is ALWAYS listening.  When you think he's not listening...he is.  And his hearing is impeccable.
We started realizing just how much was going on inside our nearly silent child's mind about three years ago.  He started using his iPad to match words with things.  For example, if it started raining outside, he would walk to the window and find something about it raining on the iPad.  Or after his dental surgery a couple years back as he was laying in recovery, he started playing a Sesame street video about visiting the dentist.  While on vacation with my parents, he started getting a stomach bug and before we knew what was going on, he used his iPad to tell us all he didn't feel good.  This let us know that he was aware of things around him, but since then, with the growth of his speech we have also seen a growth in revelations about his personality through things he "says" through his iPad and videos on it.  He now targets specific phrases in his videos to tell us things.  George and I feel like the grinch where his heart grows.  Every time Clayton "tells" us something and reveals himself to us, our hearts grow.  I swear we can feel it too.  Because that's the thing... Clayton isn't just telling us things, but he is showing us who he is.
Here are a few of our favorite recent moments...

While cruising in the golf cart at Fort Wilderness, he wanted to go shopping two different times/days and we told him no to which he "said" through video clips...

1st time..."Disappointed"

2nd time..."I don't like you very much... but I like you"  I'm guessing I was the bad cop here?

And then recently, after days of being sick, he was ready to get out of the house, but I was sick and told him no, to which he responded through a video clip,

"But mother, I don't want to be cooped up all day."

I love these moments because it tells me so much about him.  (A) it tells be how dang sassy he is (B) it tells me how intensely complicated his mind is that he is able to recognize the the meaning of these phrases and the situations to which they apply and recall exactly where they are when he needs them.  I mean seriously, he has this enormous arsenal of phrases memorized to know where they are within his video collection when he needs them...it is crazy!

I have been meaning to talk more about this side of Clayton and our lives and haven't gotten to it yet and then we watched a 20/20 episode,  "Finding Owen: A Boy's Story", on Thanksgiving that had so many similarities it was eerie and pushed me to go ahead and show this side of our lives.  I think it is important for people to see this side of children like Clayton and recognize that just because they are different (and sometimes nonverbal) does not mean their brains are empty and they are void of feelings.  There is so much there.  And these children have so much joy to offer to those around them.

I have never been around an autistic child before Clayton and even now I am only around him, so when I see or hear these stories I am immensely intrigued.  I love hearing about kids similar to Clayton.  Especially learning how children like him interact with the world around them because it helps me to know if I'm on the right path or not.  Fortunately, I feel like I am.  I make a point to surround him with things he loves not the things I love and through the stories I have heard this is super important.  I also know from my own experience that while Clayton might not pay attention to me or other people, he will pay attention to his "characters".  So I use that to help him learn as best I can.  I also have been reassured through other's experiences that we are right in monitoring what he watches and what "characters" he has access to is important as well.  For example, George and I do not encourage SpongeBob and do not allow it at the house on TV or through toys.  If he is going to form attachment to and love his characters so much we want to open doors to the right characters and close doors to the wrong ones.

Anyhow, just a snippet of life with Clayton...

November Update

So my last post was kind of pathetic.  Sorry about that.  I was and still am exhausted.  As soon as we got home from Orlando, everying rolled right into caring for a sick Clayton and a sick George.  Both of whom ended up having to go to the doctor a week ago for antibiotics. 

 And then of course, I got sick too.  George is feeling pretty good now, Clayton still has a little cough and runny nose and since I was the caboose on our snot train, I'm lagging the most, but should be in good enough shape come Thanksgiving that I can taste my food!  Thankfully, I think we are on the good side of things now and I'm trying to recover from this emotionally charged past month.  

Oh and then our washer has been acting up and last night it flooded our laundry room with a half inch of water.  While me and Clayton were home alone...lovely.

And finally, George is compelting his final three weeks of school ever!!!!  He will soon be a college grad and the last few weeks are filled with lots of papers and writing.  Which is a team sport around here because English was not George's favorite subject so I do his proofreading, spellchecking, etc for him.  Everyone pray he makes it through these final days.  We have been through a lot together.  In fact, we have been through many of the kinds of things they say break couples apart.  Well let me just tell you, nothing has come as close to "breaking" us as his school.  I am a nerd.  Books, reading, school, I'm just a proud nerd.  George...not so much.  He wanted his degree, but man it has been a struggle to motivate him some days (for good reason because he works full time too and then of course there is Clayton).  We are just so polar opposite when it comes to learning that he makes a crumby student for me and I make a crappy tutor for him.  It has not been the best combination.  But I'll be dang, he is almost done.  Thank you God.

My mom got to see a picture of Clayton's troubled renal area that requires him to have a stent and she can tell you just how mucked up it is.  She couldn't believe the number of staples that where all around that area causing some of the problems.  The staples and the scar tissue are just messing him up.  The doctor was very pleased with what he was able to do in this recent surgery though.  This will likely be the last stent before his major kidney surgery.  The doctors will probably try and get this stent to last a year to a year and a half before making their next move.  Typically stents don't last that long in the renal system, but Clayton handles them very well.  I was very pleased with our Orlando experience and that makes me feel much better about major surgeries there in the future.  I will say this though...the hospital was only a couple blocks from the Pulse nightclub and driving by it was quite eerie.

We now get to have a quiet holiday provided there are no emergencies.  Our next appointments will be making a trip back to Dallas.  That will be in the new year.  So we can breathe for a little bit and soak in the holiday merriment.  Clayton is diving into the winter wonderland spirit everywhere you look.  I saw Santa in his sleigh being pulled across my counter by two beagle beanie babies just last night.  And don't get me started on Frosty.

Now that my sense of smell and taste is returning as I'm starting to get better from my cold, I've dived into cooking again.  I love cooking, but since my last pregnancy, it has not been the same for me for some reason.  This is the first time I feel like me stepping back into the kitchen.  Yesterday, I made some homemade fresh mozzerella, tomato and basil pizzas.  And today, I made homemade artisan bread and a tomato and onion pie for lunch and homemade spaghetti for dinner.  I love to be in the kitchen cooking, but I truly do have to be in the right mindset.  

Feeling good again.

Home From Kidney Adventures 2016

We're home!  Made it home Sunday evening.  What a trip.  We actually went down on Saturday, October 29th to celebrate Clayton's birthday early in case he was in the hospital later.  We camped at Fort Wilderness and enjoyed a character dinner with Clayton and Mickey's Not So Scary Halloween Party (our only visit to a park).  And on Halloween day we relaxed in Fort Wilderness and enjoyed the festivities while cruising around the Fort in a golf cart.  More on that brief vacation side of the trip in another post though.

After two days of forgetting our reality, it was back to business on November 1st.  George, Clayton and I went to Arnold Palmer and did pre-admission paperwork and testing and then went to see the doctor.  While I had previously met this urologist, George had not.  I was glad he got the opportunity to see what I saw.  This doctor is a rare one.  You just know he is special when you meet him.  I think it made George feel better meeting the man who's hands would be doing such important work on our child, especially because George wouldn't be there.  Since George is getting a new boss and all, we decided it was best for him to come home and for my mom to stay with me (my mom and stepdad joined us on the trip...but stayed in a cabin as opposed to camping).  So George left the day before the surgery.  

Once at the hospital,I asked Clayton to smile and this is what I got...

The reality was this...

He was mad at me and shaking he was so nervous.  Once out of surgery, it was a slooooowwwwwwww process waking up.  I had to try getting him dressed and everything just to get him even slightly awake.

But once he woke up, it wasn't long until we saw this...

and then the fevers started.  Yes I say fevers because they came a went a bit as we battled them with Tylenol.  Then my mom went back to the camper and I stayed the night with Clayton.  I kept trying to encourage him to pee, but he was obviously in pain and wouldn't in the beginning.  Finally, I put him to bed hoping if I woke him up a while later he would be so groggy, he would not think abut the pain.  It kind of worked.  He legitimately tried to pee I felt, but didn't get more than a drop out.  This was 12 hours after surgery in the middle of the night.  Sadly, this meant we had to do a catheter.  We had two nurses try and God help, all I could do was tell Clayton how sorry I was.  I felt so horrible.  I have never felt that crumby with him before.  He has come so far and has such a heightened awareness of everything around him and he does truly try to cooperate for things and after all of his cooperation to have to turn around and do this made me feel like total shit.  I started bawling while holding him down and repeating over and over how sorry I was.  The nurses probably thought this is why we don't want parents around; they can't handle it.  A sentiment we have heard expressed before.  Completely untrue though.  I can't tell you how many times I have had to hold that child down while he screamed over ports, catheters, you name it.  And bawling is not a normal part of my routine.  This time was different.  It felt like Clayton had held up his end of the bargain and somehow I had dropped the ball on mine; even though I know that wasn't the case.  Of all the things we do with Clayton and all the things he now cooperates with, he remembers catheters from the past and wants his "boyhood" left alone.  Doctors can't even look at it without him getting all protective.  So to put him through another catheter really sucked.  The only reason he came out of surgery without one was because the doctor felt things went so smoothly he wouldn't need it.  Which was not the doctors fault.  Clayton did not need a catheter with his last stent replacement so there was no reason to assume he would need it now.  Also, our urologists have commented that they like to be cautious about stents and catheters because sometimes catheters can get caught on the stent and dislodge it.

So anyway, the first night post-op (which if I forgot to mention we obviously spent in the hospital) was a rough one between fevers and catheters.  Oh, I never finished...neither nurse could get the catheter in, so the doctor came in around 2 in the morning and placed the catheter himself.  So Clayton had to go through that "trauma" essentially three times.  Not fun for either of us.  While waiting on the doctor, Clayton and I went back to his room and I just started bawling bawling.  The kind where you can't even help being loud cause your crying so hard.  I felt like total crap for having to do this with him after he had been such a champ about everything.  Thankfully, when the doctor got there, he placed a catheter swiftly and that was done.  I don't know the logistics, but for some reason, Clayton is hard to place a catheter in.  This was not the first time nurses couldn't get it and doctors had to be called in.

The next day while waiting to see if we would be discharged, his ViVi got him this...

We had no idea if we would be discharged or not because he had started getting sick the night before surgery and it had progressed.  We weren't sure if they would try and hold him for that or not.  Then he went a spiked a fever when they were preparing discharge.  But they still let us go, knowing we were staying locally for his continued recovery.

So back to the camper, Clayton got to be surrounded by all of his "bay-bees".  Sweet bug just laid there with the discomfort of his catheter.  We hung out for another day, which was incredibly long as we were stuck in a camper unable to do anything.  Sunday, we cautiously headed home.  A journey that was not without it's bumps including some vomiting for Clayton.  All in all, the journey looked something like this...

Mickey seat belted in the passenger, mom in the back sometimes dozing off and Clayton cradled by "bay-bees" and pillows and post vomit wrapped in towels after we stripped him out of his dirty clothes.

An interesting ride to be sure, but Clayton was happy to be headed home.

I got to remove the catheter just before bed Sunday night and we had pee first thing Monday morning!  We have since been recovering from an emotionally charged past month and especially past week.  Clayton is still sick and I'm trying to get him well so we are laying low at home.
And of course tonight all eyes in our house are on the election results.  Crazy times.  On election night eight years ago, I was in the hospital giving birth to Clayton and my life changed forever.  I'm a little scared to see what tonight brings given how dramatically my life changed last time we had a new president (even though it wasn't purely because of a new president, but rather because of my baby man).

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...

See Ya Later September

This has been a crazy last week of September.  

There was the debate of course, then George had to work 12-14 hour nights, then family stuff...and the real kicker...George's transmission went out in his truck.  Which at 10-11 years old wasn't completely unexpected, but it wasn't ideal timing though either.  We needed one more year out of it.

As Clayton would say, "What to do, what to do?"

Since we can't afford to keep fixing an old car, we are going to sell it as is and get a new one.  So I've been scouring the Internet trying to find our next ride.  Unfortunately for George, a truck just doesn't fit our budget. So we have been hunting something VERY affordable and VERY reliable.  We have learned with Clayton that you never know when his next emergency is around the corner and if he's alone with one of us, that person needs a reliable car.  And we can't afford a car right now that is going to cost us a bunch of money in repairs either.  Therefore getting an older truck with  higher mileage to fit our budget just wasn't going to fit Clayton's needs or ours.  And since he's our number one, his needs come before our wants.  So George compromised on getting a truck and agreed to an affordable 4x4 SUV instead.  What is this wonder car you ask?

A 2015 4x4 Jeep Patriot with a 7 year/100,000 mile warranty.  It has just 31,000 miles and came with an out the door price tag of under $17,000.  Woot woot!  It's simple, but fits our needs.  We aren't into luxury cars.  Our butts don't need to be warmed as we drive and we don't need touch screens.  We appreciate the simple things in life and are beyond happy with simple cars that meet our needs and don't have extras. 

We'll throw a towing package on it for the 4-wheeler and a rack for deer or whatever and we'll be good to go.  Even in a truck we wouldn't have gotten luxury features.  Cars get us from point A to B and we would rather spend money on experiences than unnecessary luxury.  Which I know isn't everyone's cup-of-tea, but that's how we roll.  

And I know around here most men are about their trucks, but George's new ride will make him more Eivin Kilcher than Willie Robertson which is 100x better in my book in every way.  I would pick an Eivin type over a Willie type every day of the week.  So the guys with their "woman wagon" comments (we haven't even picked up the car yet and George had already heard that) can take it and shove it because my husband is more of a God- loving, eco-friendly, DIY, doesn't need to measure his manhood by the size of his truck kind of guy and that is just the way I like it. :)

So going to pick up the car now and I'll come back next week to finish house posts.  And hopefully by Monday, I'll have some dates for Clayton's kidney procedure stuff too!

Fall Has Come...

The first day of fall...oh how I love this time of year.  Now matter what is going on it always makes me feel peaceful.

Oranges, golds and reds...mums just waiting to bloom and pumpkins of every shape, size and color...

Been adding some fall touches to the house...

Even Clayton's room is getting some  Fall/October love...

I raided Target's Halloween clearance last year and got three of these jack-o-lanterns. They are all slightly different and while I normally like real, natural decorations, I thought they were a perfect festive nightlight for Autumn for the wee man's room.  He loves little festive touches whatever the holiday.

FYI... Target has similar jack-o-lanterns this year too.  I scored mine after Halloween last year for $2.38 each!  Totally worth the smile they put on his face.

I was just telling my sister the other day, as I have George many times, that I am in this unique position of having a child that for the most part never has to grow up like the rest of us.  He doesn't have to grow into adult responsibilities, worries or burdens.  Not the way the rest of us do.  So I am in this ridiculously fun position of getting to build him a life that is as whimsical and magical as he can imagine.  That is such a gift for me as a mother I think.  Clayton's health robbed us of so much time, and God is giving it back to us in this challenging, but extraordinary way.

I hope I can live to 100+ making each day for Clayton more special and magical than the last.  Which is also hoping Clayton has a long life too.

Which brings me to a specific prayer request...Please pray whenever it crosses your mind for Clayton to have a long peaceful life, but for him to never be left alone on this earth without someone to love him and care for him the way he deserves.

Amen

Fading

My heart is aching...

Watching people you love grow old is hard.  I'm mean it's wonderful...and I would rather grow old myself and watch others grow old than be faced with the alternative, but it's sad.  It's wonderful they have had a long full life, but it sucks knowing there won't be many more conversations or any of those special moments you know them for.  Normally I would not post about a specific family member, but I know this one doesn't use internet so it's safe for me to post.  This is my PawPaw...

He's still with us. But he's fading.  He's 87 and is the most wonderful man.  He has always had a good attitude about life and is one of the hardest working men you ever met.  To this day he is still fairly active (particularly for his age).  He has remained pretty well off physically and has only had a very slow decline over the years...until now.  He is starting to get more and more confused and have some falls.  I've watched two great grandmothers grow old, so I know how this goes.  My PawPaw might have a number of years left, but they will not be the same.  It is so tough to watch this man I love so, fade from the man I've always known him to be.

What's even tougher is that I know this is just the beginning.  I have been one of those fortunate people who still has all of my grandparents.  In my lifetime, I've even had three great grandfathers and two great grandmothers.  And while I haven't polled anyone, I think this makes me more of the exception than the rule.  It means though that you have the opportunity to get to know those who have reached/are reaching that stage of life that is both wonderful and trying.  Growing old is a gift.  A glorious gift too many have stolen from them.  So for the ones fortunate enough to grow old, it is a gift from God that should humble you and fill you with love and appreciation.  But it is a gift that comes with challenges.  Growing old is hard.  It's hard for the individual and hard for the loved ones around them. 

So I am beyond grateful I have had the past 30 years to get to know this man and even more appreciative that he and Clayton had time to get to know each other.  And now my heart is just aching as I watch him forget or confuse more and more.  Every visit right now, I see changes.  And I'm pretty positive my PawPaw is the greatest man in the history of forever and I am just devastated right now at the idea of losing him physically or mentally.  He holds a special place in my heart that no one else even comes close to...Sorry mom, sorry George.  He is the best kind of human being and if everyone was more like him the world would be a better place.  Can you say pedestal?  But he deserves to be there.

Obviously, I've had a tough weekend with this...and then with all the terror stuff going on posting about my house seemed a little silly.  So for now I'll plan on resuming house posts next week.  

So turn off the TV and the computer, log off FB or whatever social media bug you've been struck with, put the smart phone down and go love and appreciate the real people in real life that you have been blessed with.  No one will be here forever.  

No new medical news right now.

Tiny House Week Part 4: Not So Tiny Kitchen

I love our kitchen now, but it took a full two years to get to that place.  Whether it was cabinets, or cabinet paint or shelves, we have only been able to finish the kitchen a little at a time and so it took quite a while to get to the point where I could see my original vision coming true.  Folks might think well if it was only $30 or only $100 or whatnot, then why did it take so long to finish?  The simple answer is that if we added up all of the "only $30" expenses of unfinished projects in our house or yard, that total would get big quick.  So depending on available cash flow and seasons and what needed to be done when, we have just been chipping away at everything as best we can jumping from one room to the next or from the house to the yard.  The complicated answer would include all of Clayton's $50 copays, prescriptions and fun things like insurance or flat tires, etc.  Life happens and most of the time the things that you HAVE to prioritize are the ones that are the least fun or satisfying.  Here is a quick look at how far we've come:

These were the only upper cabinets we had until recent months.

I decided I didn't need an apron sink and have no regrets about that, but I LOVE my white cast iron sink.

Between moving in and now, the picture above and below are the only photos I could find of the kitchen.  They were when I was experimenting to see if I wanted to stain the lower cabinets at all.  But I decided the oak wasn't suited for that with the look I wanted.  You can't really even see it with the odd coloration of these photos.

Those days are behind us and YAY for where our kitchen is now, because I love it!  We knew from the beginning that in spite of having a smaller house, we were not going to sacrifice a reasonably sized kitchen.  I enjoy cooking and I almost always have a dog, kid or husband in there with me, so space was necessary.  I also like a rug under my feet in the kitchen and not hard flooring.  Because of that, I designed our kitchen so that a 5x7 rug would fit right in the middle.

Obviously we had to take into account having space to open the fridge, dishwasher or oven, but we had to consider layout first.  The main question was island or peninsula.  We went with the peninsula and though sometimes I think an island would be nice, I'm sure if I had an island I'd think a peninsula would sometimes be nice.  So no regrets.  I also choose to have a counter all one height on the peninsula verses the bar style alternative.  We had the bar style in our last home and I just wasn't the biggest fan of it functionally.

We just added the cabinet closest to the window and the cabinet over the fridge in the last two  to three months.  Both of those have exponentially increased our storage capacity; which was not bad to begin with.  Having those two cabinets makes everything feel so much more complete.  As did the addition of the open shelving in the spring.  Just like the bathroom, I knew I wanted open shelving, but I also knew it needed to be VERY affordable.  One of the more industrial looking DIY options I had found, added up quickly when I went to Lowe's to get materials; so I scrapped that idea and kept looking until I found the iron corbels I used in both the kitchen and the bathroom on eBay.  I think I was able to do the kitchen shelving for less than $45.

One of the projects we have left is to add trim to the area between the top of the cabinets and the ceiling to give the illusion that the cabinets go all the way to the ceiling and the top is simply open.  Eventually, we'll add a backsplash as well.

I do have one kitchen regret.  I wish we had gone ahead and done can lights.  We did the fluorescent because it was cheaper and quicker than the can lights and we were ready to be done.  We can always go back and change that if we ever want, but it certainly isn't a priority and not something that bothers me much.

This picture captures cabinet color best.  A dark blue-gray.

And just to drive on home my point that we have just recently gotten to this "happy place" with our kitchen, we literally just purchased the stools (on clearance) in the last two weeks.  Almost all of our kitchen progress was made between the two year and two and a half year marks.  I cannot even describe how much function we have added to our kitchen in that time.  For example, when I see Clayton sitting at the counter like a big boy eating or doing school stuff, it just makes my heart so damn happy.

The wall opposite the window houses our "drop" station and Clayton's school/food storage area.  Clayton knows where his snacks are all stored, so that way he can go in and out and get them on his own.  And upper storage is always a must for hiding things from the little bugger.  The upper cabinet was in my parent's home growing up all my life and was a buffet/china cabinet style piece of furniture that I had George hang on the wall for me.

So that's it.  That's our kitchen.  DIY from top to bottom with a few projects left:

-Add trim to upper cabinets/ceiling to give a more "finish" appearance
-Add trim/framing around backside of peninsula
-Add trim to window, make a valance.
-Add backsplash
-Add side panels around fridge for more "finished" appearance.

And honestly, it will probably be another couple years before we finish what's left.  But that's OK.  We aren't going anywhere.