And now. . .

Meanwhile, back in Denver. . .

It was time for visits with Dr. Chang and Dr. Collins - two of our favorite medical professionals!

The Children's Hospital in Denver is a great facility.  Clean and bright - great place for kids to get well.

We started our day at the Aurora Campus (oddly, Denver's Children's Hospital is not in Denver!) with Dr. Collins then drove over to Littleton to see Dr. Chang.  In between we made a mandatory stop at Bass Pro - of course!

Dr. Collins said - surgery is a last resort and we are not there yet!  We have some new meds to try to control the dystonic movements.  We start them this weekend.

Dr. Chang said - time for another surgery.  We need to lengthen her calf muscle again and they will also do some work to keep her toes from curling.  No rush on this surgery because her growth plates are fairly fused - which leads to the bad news (from Sis's view) - she's not going to get much taller.  Her dad assured her that doctor's have been wrong before and she is sure to grow!

We were able to see our friends, the Randols, and visit with them. They welcomed us into their home and just loved on us.  We all need friends like that.

So we're back home.  Back to school.  Back to normal.  Normal?

Yup, that's just a setting on your dryer.

Here's What's Going On . . .

Get a cup of coffee.  And a donut.  This is a long one.  But it's my therapy!  And it answers so many questions.

If you don't know, our daughter Ashley has left-hemiplegic dystonic Cerebral Palsy due to a mid-cerebral arterial branch stroke at 6 months of age following a fall which wrenched her neck and tore her caratid artery.  Sounds fun!  You can read more about it here.  (I just posted my first link!)

It's not been an easy 12 years but it could have been so much worse.   Her original prognosis was that of an 18 month old in an adult body!  But God said, "Ha!"   She has had 5 orthopedic surgeries:  two heel cord lengthenings, one tendon transfer, one leg lengthening;  plates on her "good" leg to inhibit growth and the removal of those plates.

There's been years of seizures.  Possible brain surgeries.  Drug trails.  Drug removals.  Emotional unheavals.  Learning difficulties.

Oh, but God has been faithful!

So, here we go -

Definitions:
              Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting
                      and  repetitive movements.
               Myoclonus is brief, involuntary twitching of a muscle or a group of muscles. It describes a medical sign
                     and, generally, is not a diagnosis of a disease. The myoclonic twitches are usually caused by sudden
                     muscle contractions.  A hiccup is a myoclonic reaction.

Doctors go back and forth between the two terms above to describe the condition.  But this we do know:  she is in chronic pain, mostly in her back.  The meds dope her and make her too drowsy, tempermental and angry and, one wonderful drug - depressed.

Their suggetsions run two courses:

1.)  Insertion of a Baclofen Pump -

      Baclofen Pump     The procedure for insertion of an intrathecal baclofen pump lasts 1-1.5 hours. The pump is inserted under the covering of the abdominal muscles while the patient is under a general anesthetic. A small catheter is inserted through a needle into the spinal fluid and is threaded upward toward the neck. The catheter is tunneled under the skin to the abdomen and is connected to the pump. The pump is filled with the drug baclofen and is programmed by a computer to continuously release a specified dose that is determined by the physician.  http://www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#Baclofen


2.)  Deep Brain Stimulation -

     Deep brain stimulation (DBS) is a method of treating dystonia and tremor that involves an operation in which thin blunt wires (electrodes) are surgically implanted precisely into a small area deep in the brain. If the abnormal movement affects one side of the body, one electrode is inserted (on the opposite side of the brain than the body is affected). If both sides of the body are affected, bilateral (both sides) electrodes are inserted. The electrodes are tunneled under the skin down the neck and are connected to an electrical stimulator unit than can be programmed with a computer to stimulate the area of the brain at the tip of the electrode. The idea behind DBS is that fast electrical stimulation (130 times a second) interrupts the abnormal electrical circuit within the brain that is causing the abnormal movements.   www.neurosurgery.pitt.edu/pediatric/spasticity/surgical.html#dps


In two weeks, we visit again with the Neurologist in Denver.  At that time, she may decide both are best, neither are any good or choose just one.  Currently, the team is leaning towards Option #1 - Baclofen Pump.

How does that work?

On December 6, under general anesthesia, she will have a test dose of Baclofen inserted into her spinal column.  After 2-3 hours of laying flat, doctors and therapists will begin evaluating her improvement.  They will discuss their results and by 2pm give us a Go or No Go.  A "Go" means surgery on December 8th and approximately 3-5 days in the hospital to adjust the medication and give the spinal column time to seal and heal.

A "No Go" means we  look at two clinics on brain stimulation - Pittsburgh or Fort Worth.  I have family in Texas, so I would be more inclined to go there.  (Okay, it's Texas.  'Nuff said.) 

How does Ashley feel?  Well, the pain is wearing on her.  We see her doctor again today.  Baclofen pump - doesn't bother her so much.  Brain surgery?  Forget it!  (Thanks to an episode of House where a brain surgery was screwed up, she will not even entertain the idea.)

Dozens of folks have lined up to shave their head if she has brain surgery!  She smiles at that thought - a bald-headed church!  A bald-headed family!  wahahahaha! 

How is Chris?   He's our warrior - telling her to buck up, she can do this!

How does mom feel?  Honestly?  A little Weary.   Not fearful.  The path was laid long ago.  But I know this road, been on it for a long time, it's as long and dreary as I40 through New Mexico and Texas.  Honestly, I feel like a Gladiator.  It's another fight.  I know we will win.  But is strains the nerves to hear the crowd cheer, my muscles are tight in expectation of the conflict but I'm on my knees preparing in the Heavenlies.

How does dad feel?  It's his baby girl.

Not long after Ashley's stroke, my Great Uncle died.  I loved that man!  He had such a great sense of humour.  I was so lucky to spend so much time with my Uncle PeeWee.  On the way to his funeral, a song began to play - (I've taken the liberty of changing a few pronouns).

She's My Chld 

(Mark Schultz)

I'm down on my knees again tonight

I'm hoping this prayer will turn out right

See there is a girl that needs Your help

I've done all that I can do myself

Her mother is tired

I'm sure You can understand

Each night as she sleeps

She goes in to hold her hand

And she tries not to cry

As the tears fill her eyes

Can You hear me?

Am I getting through tonight?

Can You see her?

Can You make her feel all right?

If You can hear me

Let me take her place somehow

See,  she's not just anyone

She's my Child

 

Sometimes late at night I watch her sleep

I dream of the girl she'd like to be

I try to be strong and see her through

But God who she needs right now is You

Let her grow old

Live life without this fear

What would I be

Living without her here

She's so tired and she's scared

Let her know that You're there

That pretty much says it all.

Now, the Neurologist's Report

It has taken a few days - okay a week - to gain perspective on the past month.  Thanks for all the prayers, dear friends.

So, the Neurologist's report.  Dr. Abigail Collins - our second favorite Pediatric Neuro (Dr. G Steve Miller will always be first!) came face-to-face with a miracle.  Her PA met with us first for all the basics.  Then he took his report and a copy of Ashley's CT Scans and new MRI to consult with Dr. Collins.

On stage

As they returned to the room, Dr Collins was saying, "Amazing!  This is just amazing!  Have you seen her MRI?  It is so Amazing!"   We had not had a detailed explanation in years and, frankly, memorizing MRI reports is no longer a priority.  I had decided that a new priority was empowering Ashley to make informed decisions on her healthcare.  She needed to hear and see what her brain was doing and how it had survived.

With her Cousin - Children love her

Dr. Collins then pulled up the images on the computer.  She indicated the primary point of the stroke, the arterial branches that were affected and then explained what the missing parts of her brain controlled: inference, muscle coordination and other things that got lost in the translation.  "Amazing" kept being interjected - "amazing she walks and talks;  amazing how can accomplish so  many tasks;  amazing how she reads." 

4-wheeling in the San Juan Nat'l Forest

And we heard once again: "if she had been an Adult, she would be either vegetative or dead."

At Disney World

After being home just a few days, the printed Neurologist report came.  It is filled with basic stuff and then words like, "nondysmorphic, normocephalic, atraumatic with anicertic, noninjected sclerae."  Huh?   I was relieved she read she had normal mucous membrances.  And bowel sounds.  Then bunches of numbers about reflexes and coordination testing and future plans.

I read the report - dry reading for sure - and all I could hear in my soul, "Amazing!  Just Amazing!  How her brain has rewired!  Amazing!"

Going into Surgery

Yup.  Amazing.  Amazing, she is alive.  Amazing, she walks.  Amazing, she talks.  Amazing that the original diagnosis was so wrong.  Amazing that man is so limited in their foresight.

I learned lately that Hope is the most important gift you can ever give a person.  Hope that God hears them.  Hope that things will be better.  Hope for tomorrow.  Hope that what they see today is not the end.  I watched Ashley look at her MRI and I saw hope.  She understood her brain damage.  But not once, not for one second did she hear "disabled", she heard the most beautiful word:

Amazing!

Denver Driving

There is a very wise saying:
 
             "Somedays are a waste of lipstick."

I know those days.  Maybe if I had put some on, that trip would have gone better.

Last Tuesday evening we left for Denver to take Ashley to see multiple doctors and for surgery.  Our friend Marilyn went with us.  There's always lots of laughter on our trip and this one was no exception, yet some laughter had to wait until time had separated us from the situation!

Our first stop was in Monte Vista, CO for the restroom.  Ashley was nauseated and we both needed to use facilities.  When I saw a locally-owned gas chain that I was familiar with and stopped.  Ashley did indeed need to throw up (Note:  no fish sticks and fried potaotes before Wolf Creek pass).   We bought some snacks, Sprite and loaded back into the car.    Several blocks later, a wedding dress in a store window caught my eye?  Hadn't we passed that before?

Dadgumit!  We were going the wrong way!  Had to turn around.

This shoulda been a sign.

We spent the night in the last available room in Alamosa.  Next door to the breakfast room which started to fill with truck drivers about 5:30 am.  We were on the road early that day.  Going the wrong way again, but this time, on purpose so we could eat at McDonald's.    Our next stop was in Monument - ahh, Kohl's!  After an hour we traveled on to Denver to meet our friends at the American Girl Store.  We were all excited.

Hmmmm.  Three miles to Colfax?  I think we passed our exit.  Called David.  Chris looked it up on the computer.   We had passed the mall about 25 minutes earlier!  So, off 25 we skipped;  back on going the other way and we soon arrived.  Lunch was great - Cheesecake Factory - then shopping!

Then we left to go to the Colorado Mills Mall.  Now Sommer was in charge of directions via Ryan.  Did you know that Colfax does not have an Exit off of C470?  We do.  We then saw Golden, CO and the Coors Factory, I70 and then off the highway.  Sommer is frustrated.  Ryan is, well, his mood is undertermined and don't ask Sommer!  I went into a shoe store and got help.  We were close.  Turned around, but close.

Super Target!  Pei Wei's!  The Mall!  On to their apartment.  There we made it without turning around once!  We had a lovely evening visiting and the kids playing.  Their apartment is so nice!

The next morning we awoke to snow and a fresh-made quiche.  We allowed an hour for travel.  I listened carefully and repeated the directions back to Sommer on how to get to Colfax.  One major problem - which way do you turn on Colfax?  I thought I knew.  I was turned around.  Let's blame it on arriving after sunset, okay?  And the snow.  The visibility was low, too.

My first clue should have been hearing myself say:  "I have never driven East in Denver and seen a Mountain."   Uhhhh, duh!   In all our wondering the day before, I just assumed we had gone further west than I knew and we had to go around a mountain.  Uh, no. 

I got on I70 going East.  But I was so turned around, I knew we were headed the wrong way.  At some point (okay, maybe more than once) I heard myself saying, "Stupid State!  They mark the highways where you are coming from not going to!"   Marilyn was overwhelmed and said nothing.  I just kept going "East".  Until we hit Morrison, CO.  Yes, nestled in the mountains, quaint little Morrison.  The guy inside gave me directions, which I again messed up!

So, if ever in Morrison, heading to Aurora and you miss the 70 exit - Take C470 south to Santa Fe;  Santa Fe north to Bellevue;  Bellevue east to 25 north;  25 to 225;  225 to Colfax exit and you are there!  Our 40 minutes drive took 90 minutes!

We had called ahead and the Dr was waiting for us.  THanks, Dr. Collins. More on that appointment later, but I will say that it lead to more phone calls and scheduling.

After the visit, we were getting gas and I called David to get an update.  I was, ummm, a little on edge.  I felt like a complete idiot (no, we weren't laughing too much yet).  I wanted my husband to say, "Darling, love of my life, it could happen to anyone.  You are such a good mom.  You've taken good care of our kids.  I know this is hard, taking Sis to surgery and doctors appointments.  Anyone could get lost!  And you have only driven in this town 3 times in your entire life!  In fact, it's wonderful how well you've done!  You have such great directional sense, it was just a fluke because you are tired and worried.  I love you."

Instead, I heard, "One would think if you are on the South side of Colfax, you would turn left."  I replied, "that would be assuming one knew WHICH side of Colfax they were on to begin with."  And then I said bye.  The doctors' office was calling and I had to do more scheduling while I pumped gas, fought tears and fatigue.

We went straight to a  Chipotle's and ate in honor of Kayle's birthday.  I went to the bathroom and cried.

I have this mental picture of God leaning over a cloud in heaven saying, "Seriously?   SERIOUSLY?  The State marked the highway signs wrong?  And you're the first, in history, to notice it?  Really?  I'm right here, Kim.  I've put up an entire MOUNTAIN RANGE to give you direction.  You can't see it?  (by this time, God is laying on his stomach, stretching over the edge of that cloud, waving his hand in front of my face)   KIMBERLY!   Look up!  Woo hoo!  See me!

We all have stresses and life-highways we are trying to navigate.  Sometimes the stress keeps us from sleeping.  It forms a knot in our stomach.  And, unfortunately, it puts tunnel-vision goggles on our face.  We only see the road immediately ahead.  No signs are marked.  We can't hear good advice.   All we can see is that darn Mountain that's in the wrong place.  And that Mountain is God.

Stop today and look around.  Where are you?  What roadsign had God put in front of you?  Quit trying to get around that Mountain and ask directions!

Here we go again!

Next week, Denver's Children's Hospital will be blessed with the presence of two great gals from Durango, CO!   On April 30th, Ashley will be having the screws removed from the growth plate of her right knee and our friends daughter will be having surgery as well - the same day!  Okay, we are actually neighbors and I would much rather hang with them at our house or theirs, but we're going to Denver.  And no, it wasn't planned.

You can read about our friends and their daughter at: http://aplacecalledsimplicity.blogspot.com/

Please keep these gals in your prayers.  And their families!

Ashley doesn't always come out of anesthesia well.  Actually never.  She screams and cries for Chris, pushes people away and sometimes they must give her lots of meds for pain control.  Then, we get to travel home with her.

On Thursday, she is attending two clinics - neurology and orthopaedic. They evaluate her progress and she how they might be able to help her further.  We have some friends living in Denver now (boo-hoo!) and we will be staying with them.  And, going to the American Girl store!  Oh, yeah.  And Kohl's.  And maybe a real mall!  And eating out!  Just hanging with friends will be great.

When we get home, Ashley wants her screws welded into the shape of a cross for a necklace.

A cross.  At the cross.  That's where we live.  Beneath the shadow of the cross, covered in love and forgiveness.  Showered with grace and fed on mercy from the Father.

Hmmm.  What a nice place.

Pray for Chris

Four weeks of illness is waaay too much for this kid! As time has gone on, he hasn't been able to eat without extreme pain, can't run without pain, can't drink without pain. Monday, he missed school again; went on Tuesday; had to come home on Wednesday with extreme pain. We saw Dr. Z and had to make some tough decisions.

On Wednesday night, after Chris being sick again all week, loosing more weight and still not being able to eat, we drove to Denver with an appointment to see a Pediatric GI and a Pediatric Surgeon today, Thursday.

The drive was uneventful and David was able to go with us. It took exactly 7 hours from home to hotel with no "bumps" in the road (i.e. the passes were clear, the wind was down, gas mileage was great, and the kids slept!)

Today, we saw both doctors - the GI guy was so nice and like, "hmm, could be gall bladder; need to continue h.pylori treament; let's talk to the surgeon." The surgeon was like, "yeah, what's the question, he needs his gall bladder out." We were told that although the tests were not 100%conclusive, his symptoms, persistent pain, progressing illness and abdominal tenderness pointed him in the direction of needing to remove his gall bladder.

I do feel better having him here at Children's. Everyone in Durango has been great. Yet kids need Kid Doctors. The surgeons was straight forward with Chris and I about the risks and possible complications and the fact that this may not be the cure - though he felt like it was a small chance that it was not his gall bladder. Chris listened and then the Dr. sent his schedule-lady in to see us.

SIDE NOTE: David had taken Ashley upstairs to see her surgeon and have her legs x-rayed - they are 3mm closer in length! In 4 months we'll have more x-rays. At this rate, may get to remove her pins in the fall! Their office was so great - I talked them and told them we were in the Hospital Clinic for our son, and asked if we could get an appointment and we did. Everyone looks so good on her legs and she got to keep a photocopy of her x-rays. Cool.

BACK TO THE STORY -
God worked it well! He had one slot open for Friday! So, no driving home and back to Denver! Wow, God!

We will spend the night in Children's Friday night and then come home on Saturday.

Thanks to everyone who is feeding dogs, watching the house, hauling supplies and mostly for PRAYING for us!

"The steps of a righteous man are ordered of the Lord." I would much rather God have ordered our steps to stay in Durango. For God to heal Chris. For the h.pylori meds to have done the trick. For doctors there to be His hands for healing. But God brought us here. Our steps have been prepared. The angel of the Lord has prepared our way.

We just walk.