Tag Archives: cranial nerves

Pushing Mediocre

10 May

I admit it, I am in a serious battle!  The battle?  Fighting mediocrity.  Not for me, mind you.  For my son, and for my daughter.  For my son, Cole, the medicinal world wants to offer him a text book answer.  My job is to not accept the pat answer, but to advocate for my son’s life, and in the process challenge the doctors who come our way to get off of the chair and investigate the options.  For my daughter, the adolescent world wants to chew her up and spit her out “common”.  “Common” meaning devoid of her spark, her gifts, and her standards.  My job is to encourage her to rise above the robotic thinking of the teenaged mind, while providing her solid truths to keep her focused on the bigger picture–the adventure of life.

Today, Cole and I met with a neuro-opthamalogist.  It was a long awaited appointment.  Cole’s most significant sufferings come from the problems with his eyes.  All of which are present due to the cranial nerve damage resulting from the tumor resection.  In fact, because of Cole, I have learned so much about the anatomy of the eye–and how integral moisture is to its health.  Our tears are paramount to the entire functionality…more accurately, the physical functionality of the eye ball itself.  But let me tell you, if your physicality of the eye is impaired, guess what?  So is your vision.  So keeping Cole’s eyes lubricated is of great importance and him not producing tears is a real, and serious problem.  Yet the only solution offered today, from the “specialist”, was to insert gold weights into the eyelid to help bring the upper lid down, thus covering more surface area of the eye, which would help hold in the artificial tears Cole uses every 15-20 minutes (in addition to the gel he uses in the morning and at at night and on breezy or windy days).

Gold eyelid weights…a pat answer.  We’ve heard it before–we’ve perused the thought, the practicality of the procedure, and the risks and benefits.  Been there.  So I asked the doctor today, “Is that all you’ve got, really?”  He looked at me a bit bewildered.  Then I probed his superbly intellectual mind for possibilities.  “So doctor, tell me, is Cole’s Lacrimal gland still producing tears?”  His answer, “yes”.  So I continue, “Then let’s explore how we, actually you because you are the one with the knowledge, the gifts, and the access, can find a way to bypass the non-functioning cranial nerve five and redirect the signal via another route.  In other words, if the tears are being produced but just lacking a messenger to tell them to fill the eye, let’s find another messenger.”  And since I was fired up from having a lovely cup of coffee before our appointment, and because Cole was lower than low due to exhaustion and an hour wait to see this specialist, I continued my probing…  “What about accessing liquid from the salivary glands and channeling them up to the eyes?  Or is there a way to utilize the flow from the naso-lacrimal duct?”  (FYI: because of having such a long wait for the doctor, I was able to study the eye anatomy chart for quite some time, much to the ‘surprise’ of our specialist I’m sure!)  At any rate, as I was spewing out ideas with the impetus being “hey, this is a twenty-one year old kid with his whole life ahead of him and all you’re going to offer is gold eyelid weights?”, something began to stir withing our long awaited neuro-opthamalogist.  He all of a sudden had a spark in his own eye–the spark of excitement.  He began to see the box in which he sat, and it was as if, simultaneous to my denouncing of it, he began to tear it down himself.  The possibility of looking beyond the mediocrity of the day was stirring within him.  And you know what?  This story is just beginning.  We are off the line, wheels are turning, engines revved and running.  But as every seasoned driver knows, there are road blocks ahead.  And they pose no problem.  For we will meet them and challenge their presence…or at least I will, and by default, the I turns to we.

In addition to the aforementioned innovative process, the mere excitement which comes from bouncing ideas off of one another builds trust and confidence within the working party.  And as a result, Cole was set up with a product that was entrusted to us in a “hush hush, closed door” type of manner.  A product that usually takes quite a while to procure for patients due to its high cost and low demand.  A product which could aid in the regeneration of brain to eye communication–for that, we are keeping our fingers crossed!

The final step of today’s appointment was that we were to be given instructions for a nighttime patching system.  Now as we were wrapping up the already extensive meeting with the doctors (yes, we had more than one toward the end of our visit), I was given a gift.  The pay off, if you will.  For instead of having to endure more time in the clinic than was already invested, the specialist turned to his associate and said, “I have no doubt these two know exactly how to put it on (the patch system).  I trust them;  just get them the supplies.”

We are settling NOT for mediocrity, the ordinary, nor the average–which is why I must drink more coffee!

A fitting funny courtesy, “NYCitylights.wordpress.com”

Part III-Cole

14 Dec

Most mornings run the same for me…wake up, make coffee, make breakfast, say goodbye to Esther who now drives herself to school, and then enjoy the relief that comes from what I call ‘my morning constitutional’ (which of course is a natural bodily function and not a walk around the block).  Now in my fantasy world, I like to believe that my morning constitutional is a private affair–meaning that my family members know and respect that the time in the bathroom is sacred and should not be interrupted.  But as most moms know, once you cross the threshold of motherhood, boundaries such as privacy while on the latrine become obsolete.  So yesterday morning, while in my fantastical privacy-land, I heard footsteps approaching my bathroom door.  Next I heard the voice of my adult son and this is what he said, “Mom, as Esther was leaving this morning she said something funny and I smirked.”

“How did Cole progress while in his second week of acupuncture therapy?”, you ask…well, he smirked!  While writing this phenomenal action I feel the same type of bondage I felt yesterday morning when he spoke it through the door; for this type of NEWS should be shouted and celebrated.  We should gather hands and in a circle, do a dance of some sort, while chanting “he smirked, he smirked” over and over again.  And just like yesterday morning, when I was bound to the porcelain by certain sanitary requirements and could not immediately jump up and give my son a hug, I am bound, through this post, to only relay the words as he spoke them without the attachment of his nor my enthusiasm.  Such is the life in prose!

So let me break it down for you in the simplest, yet the most magnificent of terms…Cole’s cranial nerves are discovering new pathways of communication.  And it is through the marvelous therapeutic approach of Dr. Zhu and Dr. Moyee that this is happening!  We are beyond excited because once the nerves discover a new pathway, the communication will just continue to grow and strengthen.  Thus, while here at home, Cole is continuing the intensive eye and face exercises that he learned up north.  And on Thursday (of this week) we will follow up with Dr. Jing Li the acupuncturist here in Irvine who originally referred us to Dr. Zhu.

Other improvements noted in a weeks time:

  • Improved balance, such as, in beginning of week Cole couldn’t ride the stationary bike without holding onto something,  by Friday he needed nothing for support.
  • Better control of left eye lateral movement.
  • Right eye becoming more centered.
  • Double vision decreasing, meaning, the two objects are moving closer together.
  • The distance from his face that a given object remains one, is further out than in beginning of week.
  • Eye lid closure nearly 100%.
  • Increased moisture in the eyes, which means decreased usage of eye drops (which used to be employed every half hour to an hour).
  • Nausea completely diminished.
  • Stomach acid over production decreasing.
  • Improved stamina and endurance.

And with yesterday’s news I can add to the list that Cole is feeling muscle twitching and movement in his face.  The smile he so longs to have is not far from reach…EXCITING STUFF!!!  In addition to this treasure trove of good news, today we received the hard-copy book of the ‘CarePages’ material (I had ordered it a couple of weeks ago).  All Brian and I could do was sigh when looking at the first page.  It has been quite a year and Cole has come so very far!

Next up, Cole has his follow up MRI’s this coming Saturday morning.  And just to irritate me, I am feeling quite emotional.  What you don’t know is that my emotional sensitivity was tripped off last week when Cole and I decided to watch, what we thought would be a hilarious movie, called 50/50.  We knew going into it that it was centered around a young man who discovers he has a malignant tumor in his spine.  And though the movie promoted itself to lean more toward the humor involved in the cancer scenario, there is just no getting around the gravity of the life changing situation.  Turns out it was a little too soon for the both of us to take in.  Now the carepages book has arrived, and well, I’m all messed up!  Aaaahhhh, but this is Part III-Cole, so never you mind about me.  Cole is doing just fine.  PRAISE THE LORD!!! (and pass the ammunition–just kidding) 😉

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