120/365 Opening Night

Show nights at the school are crazy! The kids take extra loony pills, parents are on edge. We have the whole rush on the door to get the best stage view in the cafe-audi-gyma-torium. We want everything to go well. One thing I wish I could enjoy more are the returning "alumni." At tonight's Aladdin showing we had former players going back to shows we did 7 and 8 years ago. They've all grown up, but they come back because the shows they did on this little elementary school stage have helped to define who they are. One alum was my own kid, who definitely looked like she's way out of elementary school. She hooked up and spent the evening with an old BFF, ST, who joined us for a post-show Sonic treat. Still goofy together, but too much grown-up. Somebody slow down the clock!

119/365 It's not like I wasn't busy

There were plenty of photo ops today. My exhilarating run this morning, my shopping trip for the play and cast party, my readying the stage for dress rehearsal, the swarms of kids with NEEDS at the dress rehearsal, my ride to the costume shop for the returns and repairs, my blocking and musical rehearsals for Into the Woods. I just didn't shoot any of those things. So I resort to the pet pic. Hansel, who lives without the burden of intelligence, decided to attack my water bottle. I took it away before he bit through. I also caught a "couple" drying themselves off by the birdbath, I'm pleased that they like the facilities.

118/365 Not a student...

...but she's trying. She did a beautiful job on Pre-Algebra homework, which I dutifully checked as any reponsible parent should. Then she left it on the kitchen counter.

117/365 tired

Today I ran to school, picked up the 10 Genie Dancer costumes, and ran them to the shop on Parental Home and Beach. I stopped at Whole Foods ( we love their Bagels) and then came down to school. Onstage I moved the soundboard, installed and taped down the 50 foot VGA cord and relocated 2 hanging microphones. I ran to the printer to pick up the t-shirt order, then returned to sound-check the system and set the stage for rehearsal. By 5:15 all 80 or so kids were dismissed, and we had time to shut the lights and clear the scenery. Down to San Marco for a quick Moe's stop and then Into the Woods from 7-10 PM. Back home: laundry, lunch preparation, feed cats, empty dishwasher, homework check. He looks as tired as I feel. Off to bed.

116/365 April 26th!!!!

The kid from New York sometimes has to stop and pinch herself. It's April 26th. School isn't over. Smith's Point and Jones Beach aren't even thinking about opening. But today I went for a run under a canopy of live oak and palm trees, then spent the 81 degree afternoon floating and lounging. The greatest times of my childhood were squished into two short months in every year of my youth. Now, as a grown-up kid, it's summertime mostly all the time.

115/365 Same old, same old...

...maybe for Hansel. But for the humans in the house we went from bed rest to busy, busy, busy. The "Aladdin" to-do list never seems to be completed. And we can't neglect our "Into the Woods" scripts. James Lapine must've enjoyed a good laugh, imagining his actors working to memorize the book. Every reprise of the fast-paced theme has a different set of words:

1. To see-To sell-To get-To bring-To make-To lift-To go to the Festival-!
2. To have- To wed, To get, To save,To kill, To keep,To go to the Festival!
3. Wife: To shield..Jack: To slay..LRRH: To flee..Baker: To find..Cinderella: To fix..Wife: To hide..LRRH: To move..Jack: To battle..Cinderella: To see what the trouble is...
4. To Mind- To heed- To find- To think- To teach- To join- To go to the Festival!

114/365 Roadie for Hire - Free

Hanging microphones in position. 10 body mics ready to go. Sound system snaked for 19 inputs (including piano, pc and special effects) and snaked out to house speakers, 70 volt treble speakers and stage and green room monitors. All wires taped and protected. Scenery decorations complete. Costumes received and inventoried. Props gathered, labeled and arranged on prop table. 44 windows covered with dark plastic to enhance lighting effects.

Starting with tomorrow's rehearsal the work really begins.

113/365 Not in the running... just yet.

We just returned home after our first "'Bucks n' back" in more than a month. No, we didn't run. I've run some without EG while he was forced to be horizontal, but he hasn't had a running shoe on his foot since the Gate River Run. We walked, rather briskly. The evening was sticky and the gnats were aggressive (and tasty, ew). Evening turned to night, and we returned home having worked up a sweat by exercising.

Feels good to almost have my EG back.

112/365 No Way

Bear with me if you don't watch the show, but I've developed an obsession with one of the best pop vocalists I've ever heard. He's like Freddy Mercury without being smarmy. He can rock, move, and deliver a ballad that rips your heart out. His falsetto soars and he can rumble with the bassos. Truly my favorite in my gulp 8th year of watching this show. Now I know this isn't scientific. The dialidol.com website has folks download some software and then dial from their computer, measuring busy signals. Based on those they make predictions. But Lil? She was on the low end of mediocre, definitely disappointing. If a sistah butchers Chaka Khan it's over. Maybe it's my fault. We recorded the show and watched it when we came home from rehearsal. By the time we watched the voting was over. Disenfranchised! Again! First Election 2000 now this!

Maybe a bit hyperbolic, but I urge the throng (singular) of my reader (also singular) to remember the name Adam Lambert. He's really good.

111/365 H H H High School

We toured the campus today. Impressive facility for musical theater students. We're lucky to have such a school within striking distance. Truthfully, if we still lived on Long Island (read Lawn Guyland) IMG wouldn't have an opportunity to attend a dedicated arts magnet.

Most of the kids I saw switching classes seemed happy, pleasant and soooo teen. The piercings, the swaggers, the arms around their boy/girlfriends, the tiny tank tops with pushed up...

Not much different than junior high, I guess. But there's no turning back now.

110/365 Kitty Bunk Beds

This was the scene this afternoon. Very ugly, indeed. Lounging around on a somewhat gray afternoon sounds good, but it wasn't to be for EG or me. I was off to a voice lesson - my selfish indulgence. EG was working on script and accompaniment and then gulp drove to school to hand out a rehearsal notice to the kids. 7 rehearsals and then Aladdin. It's time to check that box. And the neuro-opthalmologist promised she'd be ready with a back-up plan if the healing trend ceased or reversed.

109/365 Ghetto Chip

Yesterday was so eventful, I forgot this picture. I was certain I had pre-registered for the "Run to the Sun 8K," but, alas, my name wasn't on the list. Race day registration disqualifies the use of a personal timing chip. Walk-up runners (?) must go with the rent-a-chip. I'm so ashamed.

108/365 I'm not there again!

Today we didn't go anywhere near a hospital. I ran an 8K race (alone, sadly), returned home and groomed the lawn, and then we spirited off the family to the Concert on the Green competition. Winner or not, IG was wonderful. She was beautifully composed and sang like an angel. Boy, she did us proud. Then off to Town Center where the Cheesecake Factory's Thai lettuce wraps were more than enough for three. A little stimulation of the economy ensued, EG at Barnes and Noble, in a comfy chair, and then with the purchase of a stack of mystery/intrigue books. The daughter and I had bra shopping on the to-do list. Mission accomplished (and thanks for the bra $, Grandma)! Also we found a few inexpensive unnecessaries-shoes, purses, bling. A feel good romp through the mall. With the daughter safely occupied at a friend's birthday party, we undertook a grown-up dinner. My still vertical husband and I split some fajitas at La Nopalera (but I didn't share my margarita). We hit the Red Box and nailed the top rental - Slumdog later tonight. That good-looking guy in the photo is the formerly brain-impaired patient who couldn't sit up without cold-sweat soaking through his shirt or experiencing double vision. He's on the mend! There might be one more procedure needed to patch up the residual damage, but he's almost back to his old, bumbling, lovable, foolish self. And I wouldn't have him any other way.

?

Does this work?

107/365 Here Again. Again.

Shands Jacksonville. Basement waiting room, Nuclear medicine department. Here again, for EG's regular date with the scanning machine and my regular date with Bob Barker's replacement, the smirking Drew Carey. We, however, are not smirking. The results of the scan showed no leak yesterday. NO LEAK!!! Last week the leak was so large that the leaking fluid obscured the tear. So, maybe it all healed itself. Great! But then why was EG in so much pain this morning that he couldn't sit up in bed? Then I hear from a friend/parent at Paterson that the word on the street is that Mr. G is up and well. Did they see him grabbing his head, tears in his eyes, and fighting the pain to get up and dress for another scan of the nuclear material circulating around his spine? Probably not. Nor did the company that denied the workers' compensation claim.

Another interesting development is my employment situation. While I take on the simultaneous roles of medical transport, nurse, lawn guy, pool boy, cook, laundress, and maid I have put my "paid" vocations on hold. I tried to quit the Kinderjob today. I brought in the polo shirts and curriculum guides, explaining the great unknown that lies before me. They really, really want me to work there, so they basically un-quit me. Returning home to fetch EG for our daily run to the Shands basement, I took a call that has offered me an additional dozen or so days of training work. So the Kindercareer isn't likely to happen, as 12 days of training work equals one Kindersalary per annum.

My path is clearing, and I can see where I am headed. Now I want my husband back so he can walk (and run!) the path with me.

106/365 The Ill Don't Suffer Alone

No, this isn't a duplicate post. It's just that life is turning out to be a lot like Groundhog Day. Back in the basement of Shands Hospital Nuclear Medicine waiting room. Supposedly the isotope is circulating where it needs to be. EG has an hour's worth of imaging going on to see if they can locate the tear. As for me...waiting room, jumpy nerves, and my daily dose of The Price is Right on the waiting room TV. If his testing runs long, I may even catch up with today's episode of Judge Joe Brown.

105/365 Another day, another hospital waiting room

The sun is shining, the storm is over, and I'm in the basement waiting room of the Nuclear Medicine department at Shands Jacksonville. EG is upstairs where they are inserting a radioactive isotope into his body. Hopefully it will circulate with his cerebrospinal fluid and show them where the tear/leak is happening. Then it can be zipped up, by whatever means, and life can continue for us all.

Until I hear an update, it's Facebook Scrabble, waiting-room-tv-soap operas and frazzled nerves for me. Worse for him: painful headaches, double vision, and complete helplessness. Enough already!

104/365 Waiting through a Windstorm

The doctor didn't call until sometime past noon today. Just as well to stay in on this stormy, windy morning. I think there's half an oak tree in the pool. Poor Polly, our Polaris Pool cleaner. She can hardly keep up with the tree droppings. Big clean-up job for me when the weather clears.

Doctor called and the conversation went something like this. "Why aren't you at the hospital, undergoing the cisternogram? They didn't call you? You didn't talk to them? You're supposed to be there today! We're gonna' find that leak. I'm calling them right now, I'll call you back."

The storm is over, but the wait continues.

103/365 Waiting for the Phone Call

EG didn't allow me to photograph him for this post. He's way past his haircut and hair color due date, so it's probably for the best. He and the cats participated in the same activities all day today (HG and GG) pictured above.

The neuro-opthalmologist called this morning at 8:30. I love Dr. Hill. She starts the day thinking about EG's case. When we delivered the news that Friday's patch attempt seems to have failed, she detailed the forthcoming possibilities.

1. Another patch attempt, though she was unsure that she could convince the interventional radiologist do a patch again without knowing the site of the tear.

2. Another radio cisternogram, if the nuclear medicine department agrees to do it again so soon after the first. If they inject the isotope while he undergoes a CT scan they have better odds of hitting the circulation of the cerebro-spinal fluid.

3. The possibility exists that the tear is too large to repair with a patch. In many cases these things heal themselves. Since we've completed week 4 with no cessation of symptoms, it may be that the tear is large and the repair will have to be done surgically. Eek.

102/365 Stand-in for My Running Buddy

She won't run with me, but we had a wonderful walk. We need more non-confrontational time like this. It seems like so much of our time together is wasted on my efforts to convince her to be more responsible and her attempts to wiggle out of anything that has the appearance of work. Tonight we walked 4 miles round trip to her friend EP's house. It was a gorgeous, breezy evening. We silly-walked and teased all the way home, as I tried to keep the topic of conversation off of THE Boy. She makes me nuts, but I'm crazy about my girl!

101/365 The Best Therapy

What a delightful day we had! No change in EG's medical status, but we had the most "scrump" distraction. EG followed doctor's orders, reclining beside (or within) the pool. We had a visit from LMJ and her Mommy and Daddy. With an almost-two-year-old around, it's hard to talk about anything but her, so we hardly mentioned the ongoing medical drama. She snacked on some Passover matzo brei along with her watermelon and apple slices. She wore her first her water wings and loved the water, especially the jumping game. Jumping into the arms of loved ones, trusting them to catch you when you need support, we've been doing that a bit lately too.

100/365 Flat on His Back - Still

The cisertonogram didn't work because the CSF was too low. So they couldn't find his "tear" that way. The MRI showed all the fluid leakage, so much it didn't have a good view of the tear. Today they tried to patch a tear without knowing where it is. The Interventional Radiologist who did the epidural bloodpatch said that this is the needle in the haystack method of curing him, but I say, hey! They're working on curing him! He must spend 24 hours as flat as can be, fluids-a-plenty. If this doesn't work were onto plan B. Or is it C? D?

99/365 Waiting is the Hard Part

It stinks being a patient. A patient has pain or illness, the symptoms, discomfort, fear. It stinks being a patient's next of kin. The empty, helpless hours, the wishing and the waiting.

98/365 We have great fortune

My job- an unfortunate turn in the economy has left me with too much time and too little income. EJ's chorus riser lifting incident- a classic series of unfortunate events.

But still I think we have great fortune.

We invaded the home of MJ, LJ, and LMJ last night, after a long day at the hospital (including 5 attempts at a nuclear spinal tap) and before our musical rehearsal for Into the Woods. We were down the block from them, literally, when I called and said, "How'd you like some company...now?" They opened their home, offered up their couch for reclining purposes, and even hooked us up with some awesome pizza.

Coming home after 10, tired and stressed, we were greeted by the BJNR crew. They had cooked and cleaned, and had an scrumptious angel-berry Greek yogurt delight waiting for our dessert.

97/365 A Short Venture

With a full van, we ventured out for dinner. Maybe too much for EG who looks pooped even after a full day of reclining. After dinner we rushed home to don the Popeye patch so he could watch American Idol. Looking at him, watching him in prolonged discomfort, I hate most everybody in the medical profession and this ridiculous system that has dragged this out. I want my EG back.

96/365 Reclining Therapy

Well, he's supposed to recline and take in caffeine. On a float in the hot tub with coffee at his side, at least he's mixing it up a bit. The majority of the past 3 weeks was spent in bed. Hopefully his radio isotope is on its way, and then he can have his healing treatment. The "Honey Do" list for my soon-to-be-healed husband is growing exponentially.

95/365 No Vacancies

The BJNR crew arrives, hungry and wiggly, but we're prepared. Even though EG is still flat on his back, good friends and laughter will help us to get through this trying week. Medical testing, treatment and crossing our fingers are on tap.

94/365 Following Doctor's Orders

He remained in a horizontal position, with a little help from a couple of felines (see paws poking out on the left). Horizontal time allowed for a little productivity, memorizing lines for Into the Woods between naps and doses of Mountain Dew. So far he hasn't healed himself, but wouldn't it be great?

93/365 Science Lesson and Miracle Cure?

Finally a diagnosis! EG is experiencing postural headaches and an isolated sixth nerve palsy secondary to spontaneous intracranial hypotension. This rare occurrence was the subject of a European Journal of Neurology article on 13 Oct 2006.

What happened, in short:

1. The inappropriate lifting of something too heavy

2. This caused a spontaneous tear in the dura, the membrane that surrounds the brain and spinal cord

3. The leak allows some Cerebrospinal Fluid (CSF) to escape

4. This causes low pressure in the spinal system, indicated by postural headaches (the ones where there is near total relief while reclining, but the brain shifts and causes headaches while upright)

5. In an upright position the brainstem sags over the clivus causing pressure on the left 6th nerve, the one that allows for lateral movement of the left eye.

6. This eventually results in a palsy, where the eyes aren't tracking together, creating two separate images for the brain and horizontal diplopia (double vision).

THE TREATMENT

Plan A

In some cases, where the tear is minor, the body will self-repair. This calls for total, horizontal bed rest and a general increase in fluids, especially caffiene. The wonderful neuro-opthalmologist we saw recommended buckets of mountain dew, the drink with a great deal of bang for the buck in the caffiene department. Sadly, Mountain Dew tastes like loose, bubbly mucus, but self repair is a lot easier than plan B.

Plan B

1. He will undergo a radio isotope cisternogram. This test uses a small amount of radioactive material, inserts it into the lumbar space of the spine, and then a scan is performed to locate the position of the tear. Hopefully the tear will be found, but in some cases it is too small to locate.

2. Next up is the epidural blood patch, performed at least 24 hours after the cisternogram. In this procedure a small amount of his own blood is injected into the lumbar space. His blood will, presumably, plug the leak providing immediate relief of headaches, and within a few days, with the return of normal CSF fluids eliminates the sag of the brainstem on the left sixth nerve, the palsy is corrected, and the double vision ends. If they cannot locate the tear during the cisternogram, multiple blood patch procedures can be performed.

3. There is an outside chance that the blood patches are unsuccessful (and we have no reason to believe they won't work). Then it is possible to create a fibrin glue and patch. This is a patch made of the patient's blood and other agents.

4. On the extreme outside chance that all patches fail there is an option of surgical repair. But we don't want to go there.

92/365 The Update

91/365 Too tired for a picture

Just home from hospital, so technically I missed a day. Today the double vision was confirmed. No cause diagnosed. No treatment prescribed. Follow up with family doctor. The one I called on Monday who said to go to the ER.