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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”

Cole Balboa

24 Jan

News, news, and more news.

Of course, after posting my phenomena of not having a headache with the last rain, I awoke with symptoms of a headache on Friday morning…the morning of Cole’s surgery day.  And lo, it turned into a full blown migraine…while Cole was under the knife.  I will write a second posting, after this one, titled, “Betty Cranker the marriage killer”, you’re sure to enjoy it, or unsubscribe to my blog–one or the other.  Turns out it did rain the next day, Saturday…my internal barometer is back at work.  Bummer!

The name of the surgery is so long I can hardly remember any names from it.  I will pause and see if I can find it online, hold please…ok forget it, too many plastic surgeons in our area…I can’t find the name of the surgery.  Well anyway, when I was called back to see my son, I turned the corner of the room and came upon his post-op bed only to find a prize fighter, with two very swollen eyes, red and black and blue, with tears of blood slowly creeping their way down his cheek.  Cole Bent turned Cole Balboa!  Apparently all went well and what I was witnessing was normal.

Now funny thing is, Cole has a tattoo on his forearm of a rendition of Jesus crying tears of blood, so all I could say, upon seeing the red tears under his eyes was, “hey Cole–you look like Jesus.”  And of course he had to come back with some dry “Cole style” comment even while still being under the influence of the sedative.  Funny kid!

Well all has been going well over the weekend.  We have been putting in his antibiotic cream, applying cool compresses, and not messing with the area near the eyes, even though I desperately wanted to clean the dry blood in and around the eyes.  But tonight…tonight…tonight…

AAAAAAaaaaaahhhhhhhhhhhh, tonight.  Tonight I was in the kitchen making dinner when all of a sudden Cole appears and says, “Um mom, my eye is bleeding.”  I turned from the stove to see my son standing at the counter with a red stream of blood pouring from his eye, like a perfect red line was drawn down his cheek onto his chest and down to the floor.  At that moment our household moved to “DEFCON 1”.  Esther took over at the stove, I attended to Cole, his eye, and getting the UCI doctor on the phone, Brian attended to cleaning the blood off the carpet and floor all the while doing his best to gather the supplies I was calling out for him to get (why is it when there is an emergency involving blood, not a clean rag, tissue or cloth is anywhere to be found? …baffling I tell you!).  The good news brought forth from the telephone is that at about day 3, it is “normal” to have a blood vessel “erupt” because during surgery they had to cut a few of them and subsequently seal them via cauterization.  So the good doctor said that all was well as long as the bleeding stopped within five minutes…which it did.  Whew, back to DEFCON 4…we haven’t hit 5 since Cole’s surgery.  And in all honesty, I don’t know if we will ever go back to that place of rest.  Though one can hope, and hope I am full of!

Now I just paused writing for about 40 minutes because Cole needed me to help get him settled for the night.  And lo and behold, just to set our evening down with a cherry on top, the other eye sprung a leak.  It too settled itself before the 5 minute marker…yuck!  Now how is that for a bedtime story?  Speaking of stories, after things had settled down some Esther, my lovely teenaged daughter, announced, “I don’t ever have to see a horror movie…I live it here!”  And you know something? She is right.  AND, she is currently cuddled next to me and in between her dad and I.

I will close at this good point.

Cole's after surgery look

 

Heading North

9 Nov

A big “THANK YOU” to those of you who helped set me on the path toward finding an acupuncture doctor, and “thank you” to Karen (Flaca), for putting us in touch with Dr. Jing Li.  Cole and I both met with Dr. Li yesterday at her Irvine clinic, and she is an Anthem Blue Cross provider–YAY!  It was an extensive 3 hour visit!  Our scheduled appointment was for 10:30a.m. and we left the office at 1:00p.m.  Thankfully, I packed a lunch ‘just in case’, and as we were devouring our goods in the car Cole stated, “we sure have been eating a lot of lunches in parking lots since seeing so many doctors.”  It is true, and in many different cities!  Which brings me to my title…

Dr. Li thoroughly evaluated Cole.  She listened, asked questions, took notes, and nodded her head.  She excused herself for a moment, returned and sat down on her stool then took a deep breath.  She spoke with confidence and purpose, choosing her words carefully and methodically.  She addressed Cole directly as well as engaged me into the dialogue when appropriate (I love it when a doctor recognizes Cole’s intellectuality by addressing him directly–that wins points with me right away!).  She spoke to us with an authoritative knowledge and experience, yet she eagerly drew upon our resources of Cole’s condition as well.  We both immediately respected this woman and felt confident with her recommendations.  The following is our first step, at her suggestion, as paraphrased by me:  “I first have to tell you that acupuncture, in a case such as yours, is most effective within the first six months.  That being said, it is in your best interest to get started as soon as possible.  However, since you are so young, I believe you should have access to the best in the industry for your condition.  There is a world renowned doctor who has devoted his life toward studying and treating people with neurological conditions.  I know many cases who have flown him in for treatment.  I am not saying you should go to him, I could treat you here myself…I have learned from him.  However, I want to not withhold any opportunity from you, because you are so young and if it were me or my child, I would want to be seen by him.  Honestly, I can probably do a better job treating your other conditions (Cole’s GI issues for example) because Dr. Zhu is so specialized.  But for the neurological conditions, he is the best.”

Dr. Li went on to tell us that Dr. Zhu has one clinic in California, in northern California.  San Jose to be exact.  Cole told her he was interested so she got on the phone and called Dr. Zhu on the spot.  She first had to check if he was presently in the country and then second wanted to discuss Cole’s case with him.  Turns out he is in the country until the end of next week, thus I will be driving Cole up north to the bay area on Monday the 14th (I would leave sooner but it is Esther’s 16th birthday on Saturday and my sister Leah and brother Aaron will both be in town for the occasion).  Unfortunately, Dr. Zhu does not bill insurance so this will be an out-of-pocket expense, though his rates are more in line with what I consider reasonable and acceptable (unlike that of Dr. Connealy’s $425- fee for the consultation).  All in all–with our travel expenses and 5 already set appointments, I am expecting the costs to fall under one thousand; in fact more in the range of $800…not too bad, all things considered.  Wait, wasn’t “all things considered” a radio program on NPR? 🙂

Anyway, we are heading North.  Not to Alaska, but to San Jose…do you know the way?

 

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