Rodeo Roundup

On Saturday we took the kids to a local horse farm.  They were  having a fundraising event for Horsepower- a therapeutic riding association that serves individuals with disabilities.  They were holding a Wild West Day.  The kids were fascinated with all the real cowboys and cowgirls.  They put on a shootout competition with balloon targets. 

And then gave the kids a turn to run the course on their stick horses...

Carter had fun brushing up on his lasso skills...

Then he was up on the horse to test it out.  They turned it on and both the horse and calf started to spin and move, but sure enough- he did it! 

We played some cornhole...

so

practiced carriage driving...

and painted some real horsehoes...

It was a great morning with some beautiful animals and very generous and compassionate people.

After a big NC State football win, we went over to some friends' house for a smores' roast.  What better way to end the day!

Yum!

After a night of snack, giggling, playing, running, laughing, and smiling...

They all laid down to watch the stars and sing songs...

A perfect ending to a wonderful day.  We are so blessed to have such wonderful friends :)

Fabulous Fall Fair Fun

It is fair time in our neck of the woods.  A right of passage every fall.  We are very fortunate to have such a great one right in our backyard, just down the road from our favorite hospital.  The Dixie Classic Fair is one of the top 10 in the nation and doesn't disappoint.  We have not been in several years.  This year I really felt like it was something we needed to do.  It has been one year since Julia's last chemo treatment.  A year ago she was admitted at the hospital, in isolation, and feeling rotten.  This year we are going to celebrate.  I was so excited to tell the kids we were going and spending the entire day.  They are great ages- perfect for all the kiddie rides, able to walk all day, and requiring little extra gear.  We bought the all day ride bands and set out.

The rides did not disappoint.  At last count the kids had rode somewhere around 28 different rides.  Some of them they rode numerous times.  Those little bands were worth every penny!

I love seeing how much fun they have together and how much fun they have pretending and laughing. They are so blessed to have each other

We saw a great show called Agricadabra.  It was a combination magic show and agricultural education.  Carter was selected to be an assistant.  I thought he'd be really excited.  Little did we know the trick was to take one of his shoes and appear to burn it to a crisp.  Those of you who know Carter know he found this less than amusing.  Then the guy starts apologizing and handing him cash.  He took it with his hands on his hips and fire in his eyes.  The gag continued for a little while and eventually he whispered to Carter that he would get his shoe back in the end.  This seem to ease some anxiety.  Then he put him used him as his magic "dummy" performing tricks and making balloon animals.  It was really cute.

Carter walked away with a balloon dog, a magic wand, AND his shoe.  In the end all was well :)

The Forestry Service was there doing a workshop about native trees.  The kids had fun matching the items to the appropriate tree.  I was impressed that Julia got all her questions right, too.

Then we headed to the Yesteryear Village.  It has actual buildings from the local area that have survived for hundreds of years.  Carter was intrigued by the outhouse...

and the blacksmith's shop.  They did a great demonstration and explained their trade to the kids.

It was fun to show them an old loom and watch as they figured out how the process works.

Then we headed to the petting zoo and animal barns.  Yes, we fit right in :)

The kids bravely fed their carrots to the goats, cows, llamas, and camels. The animals were not at all shy, but the kids didn't seem to mind.

 

Then we went to check out the pigs, rabbits, goats, and chickens.  The kids were fascinated by all the chickens.  I had no idea they came in so many different colors and sizes. I think we looked at every one in the building. 

And if you ever think your hair is hard to style, think about this dude...

Then it was back to the midway for some more rides.  These two daredevils love roller coasters and they had lots to choose from. They rode everything they were tall enough to ride.  It was even better than an amusement park.  So many rides to choose from!

Julia was loving the purple truck...

and thought the pop-a-wheelie motorcycles were a blast.

One of the best parts of the fair is all the food! And this one is no different.  There are vendors and delicasies as far as the eye can see.  From fried candy bars, to pizza, to italian ice, to gyros, to yoki soba, to roasted corn, to cheesesteaks and the newest additions this year? Fried butter and Krispy Creme hamburgers!! Think Big Mac collides with a donut shop.  Somehow the thought of pork, beef, condiments, and doughnuts just doesn't sound very appetizing to me.

We decided to stick with some old standbys and stay on budget.  We shared a waffle cone and I have to say it was some of the best soft serve I have ever eaten. 

We also made room for a caramel apple, homemade root beer, and fresh cut fries. Mmmmm! Next year the food budget is going to have to grow just a bit.

After refilling our tanks we hit the rides again...

Julia loved the Kangaroo Bounce...

Carter enjoyed racing the other kids down the Titanic slide...

And at the end of the day, as the sun was setting we finished up with the gorilla bounce house.  At last count they had done it 19 times!!

It was a full day of fun all around.  I cannot believe how well the kids did walking for 8 hours without so much as a whine or complaint.  Julia has come so far in the past few months with her endurance and strength.  She has definitely become more heat tolerant and energetic. 

We saw Sparky on the way out and enjoyed a demonstration in the Safety house bu the fire department.  The kids practiced their fire safety skills and even climbing out a window.

We had a fabulous day.  Picture perfect in every way.

I still consider such a huge blessing to be able to enjoy the simple things ion life like taking my kids out for the day.  After over a year of being housebound and isolated by cancer treatments, everything is new again. We never take a single day for granted.  As I watched the kids riding and laughing I couldn't help but tear up that they are together, Julia is healthy, and we are at the fair.  Not too long ago being in a crowd was torturous.  All the precautions of masks, stroller, sanitizers, cleaning wipes, etc.  Constantly being alert for sick people.  Worrying about what she touched.  All that anxiety is gone and kids just look like kids, not infectious vector agents :) As we approach the one year milestone with next Thursday's scan day, today was a day to celebrate how very far we've come.

I am happy to say I have been feeling well, too.  Dr. Klein's formula of no caffeine, lots of water, heavy salt, and beta blockers seems to be working so far.  I was curious to see what my blood pressure was like when I went in for my flu shot this week.  I have been salting all my food and eating sea salt right out of the container. (I was excited to learn about a new Clif product for runners that gives a sodium boost and tastes like margaritas! Thanks Chris! Won't need to carry a salt shaker now.)  I anticipated it would be a little high.  When the nurse took it she said, "Wow, you're borderline." That's what I was worried about.  I said, "It's high?" She answered, "No, you're borderline alive!" Guess I haven't exceeded that limit, yet.  So we continue to work on finding a balance.  The doctor is having me open the beta blocker capsules and dumping some out, to lower the dose.  I am working hard to drink as much as I can.  Some days are better than others, but I'm working on it.  I really miss coffee, especially as the weather gets cooler.  But I'm just so happy to be feeling stable again and feeling truly blessed.

September Wrap Up

It is our prayer that awareness and funding of childhood cancer increases every year. As September ends, you may be wondering how we're doing? I am happy to say some strides were made this month that we can all be proud of.

Here is the PAC2 Letter of Thanks. There is much to be proud of and some great ideas for the future. And remember the battle continues everyday, not just in September. We've continued to wear out childhood cancer t-shirts on a regular basis.  They have been a wonderful conversation starter.  I feel blessed to answer strangers' question or share a bit of our story.

Sports Weekend

We had a special treat last weekend.  Grandpa flew in for a weekend visit.

On the agenda? Sports, sports, and more sports!!

Carter had baseball practice Friday night topped off by a yummy trip to Feeney's for fro-yo.  The pumpkin pie was yummy! The pina colada and root beer float were tasty, too :) Then home to catch the Phillies game on TV.  Saturday morning started bright and early with SportsCenter, pregame college football, and some catch in the yard.  Then we headed to Carter's baseball game.  He was so excited to have Grandpa in the dugout.  And we twisted his arm into keeping stats for us :)

Carter was thrilled to use his new catcher's mask.  He's been saving his allowance for a long time for this one.  Our little Carlos Ruiz in action...

The boys played a tough game and made some good plays.

Then we headed home to catch the NC State game on TV.  So close, tough loss for the Wolfies.  Then a quick dinner at Fuji for Japanese (while conveniently watching football on the TV over the bar).  And made it home to see the Penn State game on TV and play a few rounds of football in the living room.
Sunday, after church we watched some of the Ryder Cup tournament, the Carolina Panthers, and then the Steelers game.  Carter had another baseball game in the afternoon.

Stretching to try and make the play.  Just a few more inches...

Coming across the plate to score a run...

Julia and Grandpa enjoying some popcorn and peanuts in the dugout...

The boys played a great game.  Everyone had a hit and got on base this game.  They made some great outs, too.  Its fun to watch them all making progress with each game. Then sadly, we had to take Grandpa back to the airport.  It was a whirlwind of activity, but in the end we had some very happy sports fans! Thanks for the memories Grandpa! The Purple Panthers loved having you helping out with the team :)

Animal House

It started with a simple question...

Billy asked, "Why is the beta fish's bowl only half full of water?"

I started to explain....  "I started putting in less water because ever since he got sick while we were out of town and lost all his fins, he has trouble swimming.  It was too much work for him to get all the way to the top to eat, so I lowered the water.  I want to be sure he eats, so he can grow new fins."

I'm crazy.  Go ahead and laugh it's okay.  It's a disorder, I know.

Why am I stressing over this fish?! The same fish that live in plastic cups in gas stations can't cut in a glass bowl in our kitchen?! Go figure.  But we haven't given up on him.  Though I wonder at times if he's suffering.  I just don't have the heart to flush him and kill him myself. Again, I know I'm crazy.

Pet problems aren't new to us.  Chloe is our sweet white long-haired cat.  I received her as a gift 13 years ago from the children I was nannying for at the time.  She is so gentle and loving.  She loves kids and being with people.  About 8 yrs ago she started having medical issues.  After many trips to the vet for tests, an $800 surgery determined she has IBD.  She is fine most of the time (as long as she eats her prescription $5 a pound hypoallergenic cat food!).  Unless she gets stressed.  Unfortunately her source of security is having me around daily.  When I am gone she panics, which induces bowel distress.  You can imagine what that looks like in your house.  Not pretty.  She's been doing fairly well, but Julia's cancer treatments over the past year and 67 trips to the hospital did not please her very much.  Every episode she would have would then require two weeks of tapered dosing steroid pills.

Then there's the aquarium- 2 snails, a catfish, and two small tropical fish.  It seems so simple, right?  But we discovered female catfish lay eggs on a regular basis all over the sides of the tank.  And it turns out the snails are male and female and have taken to mating regularly which means clusters of snail eggs adhered all over the tank.

Do these things happen to other people or only in our nutty house?! Seriously, it makes me feel crazy sometimes. 

So for now I will continue to make accommodations for my disabled fish, clean up after everyone, and try not to upset the cat.

Answers...finally.

I met with my new cardiac electrophysiologist on Thursday, Dr. Klein.  I have had very high hopes for this appointment and was eager to hear a new perspective on the situation.  I gathered all my medical records from the past 30+ years and headed in.  When I walked in the room the nurses said, "Oooh, he's really going to like you, you brought records."  Good sign.

He came in, introduced himself, smiled, and pulled up a chair.  Then he told me to start at the beginning.  And we did.  He poured over every slip in all those files.  We rehashed every scenario, diagnosis, test, ER trip, surgery, medication, and hospitalization.  It was like something out of a medical drama. He was able to flip through and read EKG sheets at lightning speed.  Then we talked about my current symptoms and I started to cry.  It has been such a frustrating experience these past five years and even before.  No one ever seems to fully understand what is happening.  I have been mocked, laughed at, and disregarded by many medical personnel along the way.  I have been harshly accused of drug use by more than one pushy ER doctor. No one had an answer, so they just brushed it off.  I really feel for all those who struggle with chronic pain, chronic fatigue, thyroid imbalances, etc. because this is often the situation for them, too.  Being sick for years is hard.  Being sick for years with no answers is even harder.  Always wondering if you need to go to the doctor and what are they going to say. He promised me we would figure this out and we trudged forward.

His first red flag was that none of my records have documented episodes of ventricular tachycardia- my diagnosis of the past 20 years.  I've heard that mentioned before, but no one ever pursued it further.  Dr. Klein was not giving up.  He wanted to see the reports from my 3-day monitor in August.  The nurse went out to have them faxed over and we waited.  As soon as he read them, the light bulbs starting going off.  All the events on the record where palpitations, PACs, and tachycardia of the sinus nodes, not the ventricles.  And he was able to deduce from looking at the strips of several different leads that all the impulses had the same vector direction.  He started sketching it all out on paper.  The faulty signals are coming from a sinus node at the top of my heart and are creating repetitive circuits within my heart.  This node is defective and extremely sensitive to stimuli.  Instead of SVT, I actually have IST-inappropriate sinus tachycardia.

He suspects this is just one part of the issue.  The other is dysautonomia, a disorder of the sympathetic nervous system.  Essentially what is happening is I have a dysfunctional "fight or flight response".  When it is triggered my body overcompensates and cannot convert itself back to normal.  My dysfunctional sinus node is also overly sensitive to stimulus.  It can be triggered by adrenaline, thyroid hormones, exertion, etc. or for no reason at all while sitting or sleeping.  It is aggravated by caffeine, illness, medications, etc.

It was SO validating to finally feel like someone understood what was going on.  I had to fight the urge to not jump up and hug the man.  He cracked the code! So now what?

The first step is no caffeine, ever, or even decaf.  No more coffee, tea, or soda- just juice, water, and herbal tea.  I must follow a low sugar diet.  And the next really threw me, heavy salt intake.  Yes, you heard right.  He told me I need to eat as much salt as I can stand at every meal.  Salt everything on my plate!  Bizarre.  And I need to drink as much water as possible.  Together these last two help maintain blood pressure and blood volume.  I need regular cardiac exercise to maintain a high fitness level.  And we are working on putting me back on beta blockers.  People with these conditions tend to respond very well to these drugs.  That has been my case for the past 10 years.  He feels it is worth the time and effort to try and make them work again.  So I am slowly going back on a lower dose of Inderal.

We will reevaluate in December. If I am still feeling bad, he is going to put me on a more specialized monitor that will show exactly where the faulty sinus node is located.  Ablation may still be needed in the future.  If the symptoms can not be controlled he would then attempt to eliminate the node through surgery.  I feel completely comfortable with that response.

Then he took some time to ask me about Julia and how she is recovering.  He wants to pray for her and wanted to know when her next set of scans would be (October 14th).  We talked some about cancer and all the people at our church who are battling it right now.  I feel God's hand directly leading me to this wonderful man.  It has taken 20 years, but I am happy to say we finally know what is wrong and we are working on making it better.  There is no greater gift than the gift of HOPE from one to another.  He has given me HOPE on many levels and I am so grateful.

But I have to say I do feel like such a rebel when I salt my lunch every day.  Putting salt on cheese puffs and sliced ham and cheese just feels so wrong :)     

Out of the Mouths of Babes

Carter's question at lunch today...

"How come Julia has all of the domesticated stuffed animals and I have all the wild ones?"

That is a true statement, but something that has NEVER crossed my mind! Seriously, the way this kid mind works scares me some times.  A journey inside his head would be so interesting.