Tuesday, November 3, 2015

A Shunt and a MRI

It's been a long time since we've had true shunt drama.
Five years and 2 months since the last revision.

There's been the occasional benign emergency room visit that started with ceaseless vomiting at home but the incident checked out as a stomach bug.  Those have even been few and far between in the past 5 years.

This kind of life makes you settle in.  Gives you a chance to tuck all that information of risks, symptoms, signs, and fears in a different place than its perch in the forefront of your mind.  To focus on other things.  There's no forgetting what it feels like to be in that shunt malfunctioning crisis mode but it's not a place I sit and visit long in solitary for when I do I am crippled by it.

Today Cayman's shunt wasn't quite right after receiving a routine MRI scheduled to just check on things.  It had been a year since her last one.  We took her to the hospital and she was happy.  After the MRI she was sick and miserable.  Just about an hour and a half Cayman began to sit down, lay her head against a lobby chair, ask to be carried, and her face pale.  We went to her clinic appointment 2 hours later after the MRI at which point Cayman walked like her bones had been replaced by noodles, limp and wobbly. She laid down on a bench and complained, "Mommy, my shunt is hurting."  She told me and shortly later, "My forehead is hurting."  It was a pivotal moment in her maturity.  While my heart was breaking knowing she was ill because of her shunt, I soared to hear her tell me that she had a headache!!  The past 7 1/2 years we've been kind of on our own to figure out Cayman's symptoms and what she is feeling by objective data.  Awareness, understanding, and articulation opens a whole new world of subjective data that can help us help Cayman faster if she's ever experiencing a shunt failure.  A relief comes with that.

We spent 6 hours just hanging out in the doctor's office hoping Cayman would start feeling better.  Her shunt setting kept bouncing around and had to be reset several different times.  She kept vomiting, sleeping, vomiting on and on.  It was hard to watch her feel so miserable when just a little bit ago she was so silly and happy.  The staff kept watch on her shunt setting.  When it finally did lock in at her preferred fast drain setting of 0.5 she slept propped up for 2 hours and then woke up feeling much better.  Only a small wobble left in her walk was all that remained of the brutal morning she had.  Well and maybe a slight lingering headache.  She went back to being unreliable with expression of that subjective data.  But it's comforting to know that when it's big and serious I think she will let us know.

I recalled a memory of when Cayman was really little the Neurosurgeon dialed her shunt up from a fast drain to a more preferred medium setting.  During that procedure the shunt bounced around settings.  He set it again and it stayed put.  The very next day Cayman had a shunt failure and I recall the doctor's lamenting words, "Yesterday she was happy and today she is not.  From now on when she's happy I'm not going to change a thing."  That same perspective has now broadened to include MRI scans.  She is apparently so sensitive to the slightest intracranial pressure change.  In 2010 she had a shunt failure and showed first signs of it at 3:30 a.m. and less than 6 hours later she was in full cardiac arrest.  Today in less than 2 hours she was symptomatic when her shunt setting moved from the fastest rate (0.5) to the slowest (2.5).  And that was with the shunt working, just draining slowly.  I can't imagine a full failure where there is no draining happening as the fluid completely builds against her brain and how quickly we need to be ready to react.

I have to express this, I have to get it out for just a moment for the sake of healthy realism - It's stressful going to sleep knowing your child may die in theirs.  There is an article I read on a study of special needs parents where they found the same low level of hormones from stress that is equated with those in chronic stressed combat soldiers. That resonated deep inside of me.

So how do I do it?


That's my answer because I've never known how to do this life without His wisdom.  For many, many years I have prayed each night as I go to sleep, "If she needs me, wake me." and I fall asleep trusting Him.

There's something very important to understand about this trust.  It's a confidence that He will see me through whatever this life may bring.


And my other answer:  "If you imagine the worst case scenario and it happens, you lived it twice," Michael J. Fox said that.  Great advice, wouldn't you agree? - don't imagine.  

 "So don't worry about tomorrow, for tomorrow will bring its own worries. Today's trouble is enough for today." - Matthew 6:34

Stay present and enjoy the small things.  

Tuesday, September 29, 2015

Cayman's First Day of First Grade Pictures

A perfect tale of taking first day of school pictures:

"Cayman, stand by the front door for a picture!"

She goes. She poses.  She's beautiful.

Kobe goes up there to wish her a happy first day of school.  Cayman thanks him!  They smile at each other.

*wheels screeching to a fast stop*

Ok, that's not how it went.

The real tale of taking first day of school pictures:

"Cayman, stand by the front door for a picture!"

She goes. She poses.  She's beautiful.

Kobe leaps up onto the front step with ornery intention.

"Kobe!! No!  Kobe, it's my picture. Go!!"  A little smile on his face appearing with success of ruffling sister's feathers.

Then it always goes straight to complete annoyance with each other, Kobe mad as if he's totally thrown off by the situation's outcome and Cayman's damsel in distress victimized by his invading presence, oh how could he??

Until finally Cayman storms out of there with a "That's it!" attitude leaving the more strategically picked background for pictures, like the front door with the mismatched gold and brushed nickle door handle that the husband started to change and stopped briefly to come back to later (that was 10 months ago) to the under construction landscaping the wife became puffed with zealous energy at the beginning of a summer of having only one in diapers and no longer 3 (!!!).  She took her freedom excitement out on the over grown bushes and shrubs that encased the entire space to strip it bare to recreate something inspired by the never-letting-you-down-and-always-making-you-feel-more-than-enough Pinterest. (ha!)  Decision making is not her strong point but it is better than her green thumb.  With the added truth whether in diapers or not, there is still 3 of them and an accomplishing working speed is worse than her ability to make decisions. 

This is how we do pretty.

Saturday, September 19, 2015

Our Family Garden

Sue is always thinking up another thing that the family can do all together.  We do BBQ's, vacations, homemade gummy bears in the kitchen, make your pizza night, build your own taco night, it's ceaseless.  I like that she is that way!  It builds a great camaraderie in the family that I really appreciate that my children will grow up having.

Before the start of summer Sue called me up one day saying she had just learned the city has several plots available.

Plots????  I listened quietly.

"I was thinking we could look into getting one..." she continued.

She had not yet said what these plots were for and all I could think was cemetery - now she wants us all buried together!  (lol)

But no, it was for gardening!


An area of land owned by the city had been sectioned off, divided into 3 rows of 7 gardening plots in 20 feet by 20 feet squares.  People from the town could reserve them, first come first serve.  There was just one more available and it became the Stamm Family Garden this summer!

We went into this thinking we may say we never want to do this again but at least we gave it a try and now we know.  

My dad in the background generously plowed it for us!  Thanks Dad!

The best part of gardening was watching how the kids took to it. 

My kids loved going to the Garden Center.  I remember feeling bored as a child going to places like this.
Every time we turned around the kids were loading up more plants on the cart.  This one Cayman picked up taking the display sign and all.  Grandma and I were laughing so hard!

Permission to dig in the dirt, of course a kid is going to love that!!  Sidney and CeCe, sounding surprised, commented, "This is way more fun than I thought it would be."

All the Stamm kids

Gardening with kids is a slow pace.

Planting a few perennials, like rhubarb, asparagus, and blueberries.  Perennials must mean we feel pretty confident we're going to want to do this again next year. 

Mike even got involved.  He gave the garden its first watering. 

It was a tough summer for gardening.  At least I think it was.  We don't have any prior experience for personal comparison.  However a lot of the other gardens struggled too.  It was a wet summer for awhile.  Rained a lot.  The water is great for growing the vegetables but for weeds too and they overtook fast!  When everything is that wet and muddy it's yucky to get out there to work in it.  Taking the kids to the garden was a process in cleaning them up before leaving so the van did not become mud covered too.  The kids did love the time spent at the garden.

My managing method of gardening with little kids was to weed the edge first and that became the permitted area for the kids to tend.  That way they never stepped into the garden and onto the plants (as Cassady did the first time we came to weed. We lost a few tomato plants that day).

I gave them an empty drywall bucket filled with water and each their own sprinkle cans.  They filled their sprinkling cans by dipping and when the bucket became low I showed Kobe how to fill it back up with the spray nozzle connected to the hose.  This kept them busy for a long time!  Cayman grew tired of it quickly though.  She does not like getting splashed or wet (unless she's in a swimming pool) and Kobe finds those kinds of dislikes in his sister as opportunities.  So there were a few time outs needed to maintain the feng shui of the garden.

Look how buff Cassady looks!

Watering the Cassady.

Our first, and only, beans from the garden. Something got to the beans, they did not do well.  Zucchini and tomatoes did great!  I could have a whole garden of just zucchini!  That was my favorite!
The strawberries were over ripped by the time we got to some of them.

The kids had no problem picking and eating them faster than we could say, "Let's wash that first!" Oh well, eating some dirt is part of the farming experience, right?

Thursday, July 30, 2015

Cayman Goes To The Audiologist

My phone's calendar alarm alerted my attention in the late morning to the pertinent fact that I had carelessly forgotten Cayman's audiologist appointment that afternoon.  Not a problem, it was just a matter of switching gears' of the day.  Summer schedule has more pliable give to repairs, we had that going for us.  And Grandma Sue, she's a big help!  Kobe had a planned special day to be with Grandma later that evening.  She graciously took Kobe earlier and Cassady too so the littlest one would not have to forfeit her afternoon nap in a tag along to Cayman's doctor appointment.

Originally I was thinking I would need to get the 3 of them out the door and to the doctor's office for an appointment that Cayman was terribly anxious for (as she is for all appointments) which ensues high sensitivity and increased sibling tension.  At the breakfast bar Kobe and Cayman were finishing up their plate of blueberry pancakes that Kobe so sweetly asked if he could make with me this morning when my phone dinged, informing me of Cayman's audiology appointment today.

"Cayman has a doctor appointment today.  Ok, so this is what we're going to do..." I immediately switched from frumpy mom mode to manager of the "what's next..." list.  But Cayman was not happy.  With no warning she shoved Kobe in the face.  She was nervous and Brother became her punching bag.  Kobe screamed at her (can't blame him) and retaliated with his own slap.  Cayman cried hard!

I halted the fight, thinking quick to resolve the situation's need.  It is not appropriate for Cayman to react to fear like that and that needed to be addressed.  But first she needed to understand and be understood.  Once Cayman's anxiety is tripped it's a constant renewal of trust before any lesson gets through the barrier of her mind.

"Cayman, when mommy said you have a doctor's appointment today, you got upset." She put her head down.  "Does that make you feel nervous?"  Cayman lifted her head back up and sharply nodded her head yes.  "This doctor appointment is not going to be scary." I assured her.

"Nooooo." she protested my words.

"Alright, Cayman.  What kinds of things scares you at the doctor's office?"  I wasn't really sure if she could answer this question.  More and more her expressive language is building and therefore I give her the opportunity.

"Noooo." Cayman whined, begging to shut down like she always wants to do when she's anxious.

Kobe answered, "Shots."

"Nooo, Kobe!!" Cayman yelled at him.  For the meantime I ignored her moody responses as I have redirected, corrected, and disciplined them a thousand times and a thousand times and one they return.

"That's right, Kobe.  Shots can be scary.  But Cayman, you're not getting any shots today.  There is nothing that is going to hurt you.  It is a hearing test.  What goes on during a hearing test, Cayman?"

She shrugged her shoulders.  "Oh, c'mon, I know you know."  I paused.  She refusing to talk.

"Remember going in the small, quiet room and you put on the headphones?"  Cayman sat up straighter, listening, breath calming, shoulders relaxing.  "Then there's the different sounds.  Sometimes they're on the right and sometimes coming from the left."  Cayman smiled and nodded her head.  "And what else?"  I coaxed her to take over telling me how a hearing test is conducted.

She mimicked the sounds of swooshing and whistling and her arms moved about as she talked.  She had gone from terror to excitement quickly.  But now Kobe wanted to have a hearing test done just like he also wants to go to physical therapy.  Get one happy and the other one falls.

Thank God for Grandma Sue!  She helps me out in so many ways.  The saying goes - It takes a village to raise a child. Without it the task is so much harder.  I appreciate my mother in law.  She sees to it we don't have to experience that struggle.  She gives the kids individual special attention, making them each know they are amazing human beings that are loved!

I dropped Kobe and Cassady off at her house. 

Cayman looked at me with a big smile as she climbed back into the van.  "We go have girl time, Mommy, just you and me?"

"That's right, my girl! Let's go!"

At the Audiologist's office I got to stay with Cayman because I didn't have the other two younger ones along.  They are too distracting and interrupting to take back.  Cayman amazed me with how well she followed directions.  She let the doctor clear her ears of wax build up.  She wore the headphones.  Lifted her hand in response to sounds she could hear.  Past moments flashed through my mind.  What a long journey these hearing tests have been.  From her NICU days when it gave inconclusive readings, to further follow up appointments, finally diagnosed at the age of 2 with hearing loss, her refusals to follow directions or wear the headphones at each appointment, lots of crying she did.

Today she was grown up.  My heart nearly burst with pride.  The enjoyment was all mine watching her!

She raised her hand in the air when she could hear the sounds.  After each time her hand went up she brought it back down behind her head, rubbing her hand down her hair, like you would see someone do when they want their arm wave to look inconspicuous.  It made me giggle inside.  Not sure why she did that but it was Cayman doing it and that kid gives me a thousand reasons to smile everyday. 

Clearing out the wax build up.

Making new ear molds.

Taking the stairs instead of the elevator (just 3 flights).

Monday, May 25, 2015

When the Baby of the Family Gardens

On Mike's side of the family Cassady is the youngest of 7 grandkids.  Each one planted their own ear of corn, starting with the oldest and going on down ending with Cassady.

But she had the gardening blues.

First, she tripped and fell in the dirt.

There was always a bigger kid with the exact gardening tool she wanted.

She had to wait til the very last to plant her ear of corn.

She put it down in the dirt hole.

She picked it back up out of the dirt hole.

Hand over hand I guided the baby corn stalk back into the dirt hole.

Cassady grabbed for it again.
I arm blocked the reach and directed her to help me push the dirt in around the roots.

Once the corn was planted, Cassady grabbed that stalk and pulled it right up.  This was only about the 3rd time that ear of corn had been planted and replanted.

Refusing to follow instruction I took over doing it myself modeled for her the planting process.

Cassady just wanted to keep her stalk of corn with her.

The job of watering the plant would surely shake those blues.

Not yet.

Nope.  Cassady had one idea in mind and that was to take back what was hers.

Arm blocked again and CeCe gave the little corn stalk a drink.

Oh, that got her attention. Now Cassady was intrigued.

And she happily helped CeCe water her little corn stalk.

It's tough being the baby in a line of kids.  Don't believe me?  Go ask any grown up that was the baby of the family and they will enjoy telling you just how tough they had it.