A Letter to Dr Q---

Hello Dr Q!
I hope your week is going well. With May and all of the crazy holidays coming up, I fear that that, too, will be exhausting for you. Spain will be a much deserved getaway for your family. We are going to Mallorca for the April holidays, so we will not be far from you! I am looking forward to the sun, and quality family time.

Here is Parker's update:
He was a lot less "present"on the LP Tegretol, but also seemed a lot less tired during the day. The levels seemed to remain more constant, but he was a bit "spacey"--not sure if this was due to medication levels being too low, too high, or just from the changes, and his body trying to adjust to them. Also, an IMPORTANT POINT---he was sleeping through the nights while on the LP!! For the first time EVER. That was lovely for me, and the rest of the family :):):) (Too bad this lasted only 2 weeks...)

Currently, Parker has been on non LP Tegretol for nearly 2 weeks (three times/day). And he seems more "present" when he is not tired, but as soon as I give him his meds, he is tired 30-45 minutes later--similar to the liquid (but the liquid happened faster), where he HAS to take a nap, and cries and is unconsolable until he does.Then, when he does, he sleeps too long, and has a hard time getting up. Now he is waking in the night again sometime between 2- and 4 am and he is wide awake, ready to play or watch movies, or get into mischief, etc. This, is caused, I think, by the fact that he has already slept a lot during the day... in this case I give him his morning dose at 2 or 4 am, and he goes back to sleep an hour later…and ready to get up to start the days' work at a normal hour.

Just wondering what you think? The Tegretol seems to effect him a lot--not sure what weaning Micropakine might do for him? I will do blood dosage today or tomorrow--but the local lab takes awhile to get the results.

So, that is the latest scoop!

Big kisses for a Happy Easter to you, and your chicks!
Renee

Little Mr. Incredible

I have been feeling low for the past few days. I feel like my legs are heavy, my body malformed, my spirit tired. I feel like I have been sleeping "enough" and wake up still feeling drained.

It's yucky.

I feel like the sun is shining, and I am not happy.

I feel cloudy inside.

I feel like crying. But I don't.

I don't feel like smiling. But I do.

I want to run, but when I do, I feel sluggish.

I feel like muddy, strong hands are pulling on my trainers, trying to hold me back.

And yet I pray for more wisdom, and help in understanding, and don't yet feel peace.

I feel surrounded by suffering... Broken marriages, sick, even dying children, joblessness, money-lesness, the IRS...and neuro-treatments.

I expected Parker's new medicine routine to be difficult in my mind-but in my soul, I expected it to go smoothly.

At some point along this road I decided that worrying was not a useful emotion. I decided it was wasteful.

Wasted time & energy: two things that are precious to my livelihood, and that of my family's.

So I try & place burden at the Lord's feet. And walk away. Ever mindful it is there, and grateful that He takes it from my shoulders, eventually lightening my spirit.

Sometimes it is easy to do. Sometimes I think I do it (lay those troubles aside), and yet I still feel pain and sorrow and hurt.

I ache.
I ache for everyone's sorrow around me.
Sometimes I am all encompassed by it.
And I think I cannot go on.

And then I do.

I get up, make breakfast, get 6 people ready for the day, and continue onward.
I try to shine.
But I don't feel bright.

We all know there is a direct correlation between how I'm feeling and how Parker is doing.
"C'est normal."
They would say in french. It's normal.

I try not to let it effect me, but of course it does. It infiltrates my soul. But my soul interfaces, nurtures, and teaches a lot of little souls around me every day....so I continue to try-and shine through the darkness and despair.



And Parker's not doing so hot.

He is having a lot of absences. This would look like blank stares to outsiders. But it is happening multiple times per day. We were trying to wean him of his meds, since his last multiple EEGs have shown "normal", but he's put on 2 kilos in the past 6 months, and it recently became apparent that with that weight gain & us not adjusting his meds, obvious that he still needs them.

His neurologist (whom I adore and call Dr Q), consulted 2 different neurologists more specialized in pediatric epileptic seizures and treatments for advice last week.

We (they) have decided to put him on a longer lasting anti-epileptic med to see if he could achieve more continuous and consistent coverage. He has previously been taking a liquid dosage 3 times/day, and each time after he took this medicine, he needed to sleep. With this obvious side-effect, we wondered if he also had moments where the medicine was giving him little to no coverage as well.

So he started these new meds this week. I expected there to be an adjustment period.

But when they gave me pills for him (twice a day), I decided to do my own experiment--put a whole one, a halved one, and a crushed one in three separate bowls of water. And left them for 12 hours...To see how they changed over time. He is to take these twice per day, they are to last 12 hours in him, but he is supposed to swallow them whole, or halved.

Parker is three years old. I am not sure any of my other kids could understand at 3 not to chew a pill before swallowing, not to mention DO IT, but clearly Parker does not get what I am asking him to do.

I try & halve the pill, and fill his mouth with applesauce, yogurt or ice cream and see if he will accidentally swallow it without too much questioning, but each time I see him swallow, it is followed by tongue movements and a little orange pill rolling around his pearly whites. SO I start over. Until I see no more pill, and hope and assume it has gone it's way to where it should go.

We counted 5 times yesterday that he had seizures. It is not seizures that you would hear about or expect. It is just that he has a quick disconnect in his brain where he stops what he is doing, stares into space for a few seconds (never longer than 10) before he comes back again. My instinct is to touch him, call to him, wake him up. If we do this, he snaps out of it quicker.

So he started this new medical routine Sunday night. The good news is that he is actually sleeping all night long. This has to be a good thing. For his developing brain to get continuous sleep, but also for me, and the rest of the family, too. I haven't had continuous sleep since I was pregnant with the twins. I guess that's about 4 years now--and that's a long time.

But I've asked his teachers to watch him & let me know when/if he does these stare seizures at school, and am trying to keep track of them to see if they are related to fatigue, dehydration, hunger, or change in schedule.

At the deaf school on Tuesday, I was asked to stay all morning with the deaf educator and learned so much (it was amazing and adorable what these kids do), but Parker was obviously tired and yawning all morning. I left before lunch, and when he returned home about 5 pm I received a note from the school nurse stating that during lunch, his head just plopped down into his plate and he was "KO" as the french say (Knocked Out)... But he was arouseable, so it was not a real loss in consciousness. The nurse stayed by his side during lunch. He ate a lot, then took a 3 hour nap before they woke him for his next class.

This is disconcerting.
But not terrifying,
I convince myself.
Let's keep an eye on him.

Today at the bilingual school it is dress up day (I have no idea what for--"carnivale" they tell me, I say "ok"--1/2 way through Lent? and dress up my twins). Penelope is dressed as a Pink Princess (following traditional Hall custom) and Parker dressed as Dash, the Incredibles Boy(who runs fast!).

In French the Incredibles are called "Les Indestructibles"--and Parker's teacher saw him and laughed saying, "Le garçon indestructible!"

As I walked away smiling to myself, I said, "Let's hope so. I hope he is indestructible."

He is Little Mr. Incredible to me. Incredible.
And I love him so very much it hurts.

The Boy Who Lived

So it helps that the house is a construction zone.

And the kids are out of school.

And we're trying to keep 5 little ones (and a couple of big ones) fed and happy (without a kitchen).

But we breezed through the period of February 20th through 22nd without too many tears.

And life is good here.

I have hope.

I like the metaphor of the broken kitchen wall. It's taking longer to break down, and the electricity had to be rewired since it was so old and out of code. So this is delaying the wall finishing, which is delaying the floor, which is delaying the cabinets and the stove/oven is scheduled to arrive any day now. But it's good. I want it to take longer, as long as it's done right.

Our family feels as healthy as it was before February 20th, 2009.

John and I are working on projects together.

The girls are studying hard and progressing.

Parker is running.

And jumping.

He only just started jumping last week. It's adorable and hilarious.

Imagine jumping without the sensation of gravity...

That is what it feels like for Parker.

And he does it.

And it's way too cute.

He's like a giant baby.

I think he weighs 35 kilos. And I tow him around like a newborn.

Sometimes he demands it.

Sometimes I welcome it.

But this week I celebrate his life, our lives together.

And I have joy.

3 years ago today we didn't know if he would live.

If he did live, we didn't know if we would be able to participate in life, and to what extent.

But now you would meet him on the street and never know.

Never know his sorrow, and pain and suffering.

And his mom's....

And his sisters'....

And his Big Daddy's.

And everyone else whose lives he has touched or continues to touch.

He smiles constantly.

He runs and laughs and jumps.

He speaks.

Sure, he has a lot more speaking and hearing and learning to do, but he's progressing.

Just like the rest of us.

What more can we ask for?

If it's like the kitchen, I'd prefer he takes a little longer, and gets it right. Rather than hurry through it and not learn correctly.

He's come a long way, baby.

We've all come a long way.

And the journey was hard, but good.

We're still here, still ploughing forward. My dad taught me many great things.

And I remember him saying "What doesn't kill you makes you stronger."

It resonates in my soul, it is true. But I can't help but wonder, "If it almost kills you, does it make you even stronger? Or are you proven weaker for almost falling over the ledge before grasping up the dusty, rocky wall before someone takes your hand and helps you back up, or you find the strength to get up again yourself??"

This week he has learned to say, "I wanna walk." This is not code--this means, "I don't want to go in the stroller, Mom."

He also started saying, "I don't want to."...or "I want to." Sometimes it's hard to tell the difference.

We're not sure where he learned that, since no one around here says, "I don't want to."

But it's good. I'm glad he's moved on from , "I want nandy!"

That was starting to get old!

The neurologist says Parker does not run. (But it's fast forward motion, come on.) I think these videos prove otherwise.

Run, Parker. Run!

And don't look back.

Just look out for cars...., please.

Break Down to Build Up

Of course my mind has been turned toward difficult Februarys past as we approach the ski vacations this year. We are coming upon 3 years since PJ got his wicked illness and as everyone around us prepares to leave town, pack their ski clothes, try & stay warm in this Paris Winter weather, I am happily staying strong and staying put.

We had a busy Christmas, so it's been nice to regroup and take it easy this Paris Winter. Since January I feel a physical burden has been lifted from my shoulders. It could be that the twins are getting bigger and easier. It could be Michelle, our new fille au pair! It could be that we are not running ragged with doctors appointments (as we have in Winters past), it could be that we are focusing on different things since our family seems to be healing or mostly healed since FEBRUARY 2009...or a myriad of other things that I am too myopic to see.

The past 2 years in February I have been depressed.....

And I am not a depressed person.

I try & talk myself out of it, but anyone who knows depression knows it's a hard thing to do.

Luckily I have lots of spring chickens and dear friends who force me out of seclusion.

But this Paris Winter has been unusually bright.

The weather has been very mild until recently, and we've had "un grand froid" as the Parisians call it. A very bitter cold that has settled in, but it has been less-less very-much less gray. And-

Oh-how-I-love-it.

But I think it's not only the weather that makes things seem brighter.

It's everything.

My family seems happy & healthy.

My husband is working hard. I am working hard.

We feel grateful for our health, though sad for my Dad's recent heart attack...and other notable hardships around us.

But we are concentrating on times tables, and brushing our teeth better, learning poems, colors, shapes, verb conjugations, piano pieces...ballet positions.

It's finally a house of learning & love & growth.

After we have suffered to stay afloat for 3 years.

And its glorious!

Sure, there are mountains of laundry to fold every-single-week.

And cupboards to organize everywhere I turn.

But it seems like it's just the way it should be in a working household.

John was away this week on business, and he told me," It feels like I haven't been on the road for a long while and I miss you all a lot more. Feels like the girls are getting big and growing up and we are never going to get them back..."

I LOVE it when he gets all sentimental like that.

But its true, that I have moments, and moreso recently where... I want to freeze time & just soak in the moments. The moments when Parker throws everything like a ball, falls on the floor in his crazy roll-dance...and the girls laugh and prance in their fancy dresses & newly done big-sister-produced pedicures & manicures.... When we have secret love notes under our pillows, and child-choreographed plays to watch and applaud...when we eat more candy than we every should, and go back for more.

Parker has recently discovered the word, sign, and concept of candy. He has been able to say chocolate for some time, but now it's like a crazy obsession that he asks for candy a hundred times per day. AND HOW CAN I REFUSE A DEAF BOY WHO SPEAKS AND SAYS " I WANT NANDY!"?!?!?!

It's so impossible to say no to him.

But when Axelle exclaims, "Oh! I loooooove that!" about EVERYTHING---after crying for fear not wanting to do anything beforehand...or Penelope bosses me around looking for her favorite pony or hair bow or this skirt or that mermaid....when Hannah looks me in the eye and I can see forever that she has always existed to be my child...when Abby carefully reads to or gently caresses the back of a sibling as they drift away to sleep... or uses her older, sophisticated 10 yr old knowledge to reassure a crying sibling who forgot her poem at school to just "google it"...my life seems perfect.

And I want to capture it. And fold it up delicately decorated in heart shaped paper with bright stripes & spots and doilies..and keep it carefully tucked away in my heart to open again later.

When they are grown and gone.

When I won't spend ALL DAY EVERY SINGLE DAY PICKING UP CLOTHES AND TOYS AND SHOPPING FOR AND PREPARING MEALS.

And I will miss it. I will miss them. I already do in anticipation......:)

My life is bright. Full of so much joy.

I thank God for that.

My dear, loving God.

But as we approach the Winter Vacations, I am happy to take down that awful bright green that I painted the entryway last Paris Winter or the Winter before (?) to try & feel happier & lighter, and trade it in for something different.

And we are tearing down walls, and fixing up our kitchen, changing kids rooms and reorganizing.

And it feels really, really good.

It's hard work and takes a lot of planning & budgeting, but it's going to be so bright & clean & new & fresh when we are all done.

It feels great to concentrate on worldly things that don't matter much, but that will impact us on a daily basis. That will make our home a refuge for the storm outside that is life.
We have needed this work for a loooooong time. It is overdue.

And I can't help but make this obvious parallel between us and all that we've been through....

That we are tearing down walls to better our home....and that perhaps we needed to be broken down ourselves in order to be bettered--in a spiritual way, or emotional way, or just to better understand humanity. And why we are here.

We have to break down to build up. To make stronger.

And man, were we ever broken down, and humbled.

But we are building up again. And hopefully stronger and righter and truer--to ourselves, to those around us, to our Maker. To life.

Soooooo bring down the walls. It starts tomorrow!

My Son's Future Arrived in the Mail Today

Parker's new cochlear implant arrived in the mail this morning at 9:12. Luckily I was just returning from dropping the 5 lil ones at their respective learning locations and was folding up my massive double stroller outside our apartment when I saw him spritely arrive....

THE UPS GUY.

I wanted to hug him!

And he had the most gentle, crystal blue eyes.

I didn't of course.

Maybe if we were in the States I could do that. Or not, actually, maybe he'd sue me if I did that in the States... But in any rate, I restrained myself.

This, after already getting lots of strange smirks to-ing and from-ming from school with my hair in plaits. About 8 I think. Grown women are not meant to wear braids in public, ya know. At least not in Paris. ESPECIALLY not in Paris. And all my chic neighborhood parental comrades were dropping off their equally chic offspring at their chic parisian schools as we marched our own ways... And most couldn't help but stare and smile at my braids and bright yellow stroller, and my multiple offspring (come on, you have to admit, 5 is REALLY not all that many...)in tow. So I was feeling especially unique (why?), and a little bit fun this morning. It's amazing that I was here when he came. I am not always that efficient in my timing of things. As those who know me well will attest to, hands down. (My name in french sign language means "LATE"--its kinda rude, right? But was given to me by my classmates in LSF class. I have to admit, it's a propos.)

So anyway, this is NOT AT ALL ABOUT ME.

IT'S ABOUT THE BOX. IT'S ABOUT THE PACKAGE. IT'S ABOUT WHAT'S INSIDE THE BOX.

I can't help but think of John trying to teach me what a "function" was in Calculus in college. He said repeatedly, "A function is like a box. You have something and you put it in the box. When it comes out of the box, it's actually something different. It's changed." Honestly I did not get it at all. Somehow I got a B+ in that calculus class (thank goodness for take-home exams and group finals!). But I think I might get it now.

What went into this box is a lot of plastic and design, hours and years of research,and trial and error---lots of accessories, cords and even some fancy, flesh-colored magnets and a very special minuscule computer that is totally blank.

What will come out of this box later today is the same thing. But we will quickly connect it to the ORL computer at Necker and give Parker some new programs.

What will come out of this box is my son's hearing.

My deaf son's hearing.

It's magic, right?

It's no doubt the BEST thing we'll get in the mail ALL YEAR!

This box is unbelievably noteworthy. This box has my son's future inside of it.

It might as well be covered in sparkles and fairy dust. Maybe I will put some sparkles on it and show the girls at lunchtime.




And I should quote someone who has a cochlear implant--a man named Michael Chorost, who went totally deaf in a matter of hours at the age of 36, then wrote a book titled Rebuilt: How Becoming Part Computer Made me More Human---(beware, it's very technical!)

"The cochlea has three mechanisms for converting sound into nerve impulses, called rate coding, place coding and phase coding. Place coding happens to be the easiest to replicate with a string of implanted electrodes, because from a place coding perspective, the cochlea resembles a piano keyboard in a spiral. Hair cells at the base of the cochlea resonate to high frequencies; ones at the apex, to low frequencies. The electrode array can therefore simulate the place coding mechanism by firing electrodes in the appropriate places. High frequencies are transmitted by firing electrodes at the base of the cochlea; low frequencies, by firing electrodes at the apex. The other two mechanisms, rate coding and phase coding , are so much more difficult to replicate electrically that the engineers have focused on place coding. But is replicating only one of the ear's mechanisms enough to do the job? The brain is so flexible- so eager to deal with whatever information it gets-that the answer, more or less, is yes. So the electrode array plays the cochlea like a piano. That is, a very small and very complex piano. Most sounds consist of a jumble of frequencies. A normal cochlea uses physical mechanisms to separate out the frequencies the way a coin sorter rattles coins into piles. A cochlear implant, however, has to do the task with binary logic, digitally taking sound apart and figuring out which electrodes to fire on the array in every passing millisecond. The software that manages this process is one of THE monumental achievements of bionics."

But imagine what this means if your new software is different, or "upgraded" from your older software. I just wonder if your brain is forced to adapt and work harder every time you get an update. And exactly how hard it is to "upgrade" your brain.....to adapt to newly upgraded software?!



Every now and then you have these big moments in your life....

MOMENTS where you are trembling with excitement and anticipation and hope and dreams for the future.

For me, I can say I've had a handful of moments like this:

1-The first I can think of are college acceptance letters, where your future is hanging on those letters, or more likely, the size of those letters (big envelopes=acceptance, small envelopes=refused)...next:

2-when my husband proposed to me.... and I could hardly believe my ears. I wanted to soak in every single thing about that moment--his words, his lips when he said it, remember his perfectly-gelled missionary hair cut, the table cloth and beautiful dishes at the table we were sitting at, the images of the view behind him and around us, knowing that his words and my response would indefinitely change our future....or

3-EVERY. SINGLE. TIME I pushed out a little one from the safety of my tummy into the coldness of this world, to see if it was a BOY or a GIRL.(count em, F-I-V-E)....or

4-Waiting in the dirty, old reception of the ORL department at Necker just hours after my son woke up from his coma to do a hearing exam that I did not completely understand the ramifications of... Waiting for his destiny to unfold in that doctor's office...Listening to her nervous twitch and watching her swish her hair as she told us....and we squeezed our hands together, John and I, with our jaws open, and gaping, that our sweet baby son who just woke up from 9 days of coma, and shock and seizures...and worry that he wouldn't survive..., was now bilaterally, profoundly and permanently D-E-A-F.

It's these moments in our lives that define us. How we respond to these moments and where they take us that make us who we are.

For good, or for bad.

That's where I am this morning. Shuddering with anticipation. Grateful for these researchers and scientists and programmers and miracle-workers who restore some-kind-of-hearing to my little-once-perfect-son's cochlea.

Cochlear is the name of the company. I shake with emotion and fear and trembling and hope and wonder as to how Parker's internal computer implanted in his cochlea and his brain and his little magnet on his skull above his right ear with his thick, rustled strawberry blonde locks will receive this new device, these new programs.

How they will change his life.

His future.

And ours.

Now, I'm gonna go find those sparkles.

New Year, New Goals

It's a wonderful time of the year to regroup & reorganize. As we were sitting in church on SATURDAY (the Jewish Sabbath) in Mt Scopus, in a chapel overlooking the old city of Jerusalem a few days ago, the speaker, a musician, talked of cadences. And how in music they are very important. How the pause is just as important as each note. It rung home to me that these pauses in life are when we receive inspiration, when we meditate, when we commune with who we are within ourselves and where we lie in the universe. And this is where we find God. This is where He sits, and waits for us. He waits for us to consult Him. He waits for us there to funnel us inspiration and revelation.

I realize I need to go there more. I need to receive more.

It's hard enough to make goals for yourself, but as a mother of 5, I want to make goals for each child today, too. And for our family, our marriage. It reminds me of that life-coach quote (or was it the Cheshire cat in Alice in Wonderland?), "If you don't know where you are going, any road will take you there."

I want to go places, so I need to plan how to get there, I guess.

I hope you, too, take the time to reflect in this cadence before the hustle and bustle of life takes over again, count your blessings, give thanks, regroup, reorganize, and be more efficient in the things you hope to get out of life, and accomplish from life. Not only think of your objectives, but think of your outcomes. And get there.

Parker had 2 major hiccups on our trip to the Holy Land with our brood and both sets of grandparents this past week: On the mountain of Petra in the Hashemite Kingdom of Jordan, he took a pretty bad fall, on his face and head. This, just after a lot of reflection on how often he falls, and if he genuinely needs someone to accompany him in a classroom setting (the deaf camp we are applying for asked us just before Christmas). I honestly over-estimate how healthy he is, I underestimate how "handicapped"he is. Maybe it's my positive visualization, maybe I am in denial. Maybe I know that someday SOMEDAY he will be all that God and I want him to be, so I imagine he is already there. But when he is tired, his balance is really effected, and he was hot, and tired, and on very rocky terrain, chasing some adorable puppies. But fell on his head, and scraped his face up preeeettty good. He immediately fell asleep, and it was the first time in a long time I thought he might have a seizure. HE DID NOT. But he went to sleep immediately in our arms, and I was worried about a concussion. Nope. Just needed a good nap after being dragged up a mountain on a mule, and before riding back on a camel. Thank you, dear God.

Next hiccup occurred at 4 am 2 nights later. We had returned to Jerusalem to attend church, and see the Sea of Galilee, the Jordan River, and Capernum, and Cisearea before our flight brought us home. And we were awakened by the hotel security at our wide open door asking if our son with a "messed up" face was missing? Parker woke up at 4 am or so and decided to take a stroll unattended in the hotel. He was found on another wing of the hotel, crying outside a very nice couple's room, who got dressed, and took him to the reception. I asked the security how she knew it was us, and she said she just walked around until she found a room with the door wide open. Sigh. I was grateful he did not decide to climb any dangerous walls or that we were not located on a busy street and he went wandering into the desert or looking for trouble outside of the hotel.

My mother-in-law said to me, "Were you just sick with worry?" And though, yes, I was full of lots of emotions, and reeling for a good hour after we returned to our room, and he repeatedly asked for chocolate, worry was not one of those emotions. I told her, "I've used up all my worry on Parker. At some point I realized that worry is a wasted energy. That it is better to save that energy for other emotions, to assess each situation more level-headed and do what I can." That "I realized long ago that I am not the Master of this universe. It is God. I try & ebb & flow with Parker and his future and destiny."

That being said, I think that we control a lot of our destiny, that we can influence where we end up with the choices that we make. I also firmly believe in the power of prayer. I know that it works. I know that God hears and answers my prayers. So I will make new goals to be set anew for each member of our family today, then pray for help in accomplishing these goals.


Parker's goals for 2012:
(This is my short list for Parker. His own goals would involve anything to do with outside, doggies, cats, balls, chocolate and ice cream)

Run and not be weary
Walk and not faint
Listen and hear and understand
Speak more than 2 syllables at once
Ask questions--not only one word requests
Taper epileptic meds
Increase attention span
Recognize and realize implications of danger
Wear Big Boy Pants (I am afraid this is far, far off)
Get accepted to Deaf Camp in Los Angeles this summer

We wish you all a wonderful holiday season. I hope you all felt the Spirit of Christ and celebrated His birth during this Christmas time. We were very blessed to have John baptize Hannah in Versailles this holiday break, and are so pleased with her choice to follow Him and His teachings. She was so pleased to have both of her Grandpas speak at her baptism, both of her Grandmas pray, and the rest of us sing a special musical family number in sign language with our fantastic nanny, Amber, who has returned to the US. We took an amazingly memorable trip to the Holy Land with those we love nearest and dearest. It was exceptional to walk where Jesus walked with our little ones and blessed parents hand-in-hand. We feel very loved and thank the Lord for our many, many blessings. We wish you all goodness and health and prosperity in 2012.

And enough time and wisdom to stop, and listen to the rests, too, as you listen to the music of this great life.

Hydrocephaly, CT Scans, and Christmas!

November has come to mean EEGs and December has come to mean brain scans.

I used to think that Parker's hydrocephaly was the least of our worries. And admittedly, it is not at the top of my list. But I sort of just thought it was the most black and white of all of his problems. Sort of like a broken bone. It's broken, needs to be re-set and then it's pretty much good after that. Until it malfunctions or gets infected or something. Then we'd have to deal with it at that point...but in the end, this may not actually be the case.

So off we went to Necker to get his annual CT cerebral scan yesterday & visit with his beloved neurosurgeon. It's frankly bizarre how much impact she and her team have had on my son's life and our family, whereas for her, its " just another day at the office". I ran into one of the neuro-surgical doctors in the stairwell while exiting, and I was happy to see him & report of Parker's progress. And honestly, he couldn't pick us out of a crowd at Disney, not to mention Necker. It's fine, but still, weird. Imagine how many other babies he has operated on in the past 2 1/2 years since PJ. And I think it's great that we just blend into the crowd--that means its not marked in his memory as being something extraordinarily horrific or difficult. Just standard care post-meningitis. Right? But still, again, bizarre.

But every. single. time. I go to Necker's radiology department, I can't escape there without being ripped wide open with sorrow and emotions that last. It takes me a few days to recover. I slow down, my heart breaks. I just keep seeing images of moms & dads in tears, holding babies with abnormalities, and children in comas doing emergency procedures. A little girl about 6 years old was brought in for an emergency scan on a ventilator, and I walked by her repeatedly, her parents, and accompanying doctor and nurse in masks before me & Peej were sent back to the waiting room awaiting our results. I could feel the stress of all of the secretaries, techs, nurses, doctors for the next hour while they awaited those results for that little girl and her family. And we awaited the results of Parker's routine brain scan. And I think how on earth those people work there is amazing. And they are all angels helping these little children. I am so grateful for them, and pray the Lord will bless them in their service. And bless those they come in contact with hour after hour-day and night-day after day after day.

Lucky for us, we actually get to leave there. For the space of a year, before doing it again. And yet seeing those emotional and worried parents takes me right back to the time we rolled Parker with his increased intracranial pressure in his iron crib with peeling paint through the basement of Necker to get to his scan on a portable ventilator. And every time we met a crack on the floor, we lifted his crib ever so gently amongst the dust and pipes of the basement, and continued onward. And there was silence in that long dark, dirty hallway, except for the loud beating of my heart in my throat, and my uneven breathing- and the continued beep, beep, beeping of Parker's portable ventilator....

And each time Parker does his scan, I am honestly surprised that he still has hydrocephaly. Physically as well as Spiritually. I clearly do not understand the body and how it works. Nor the Lord and His mysteries, and creations. I expect all of the water (or cerebral spinal fluid) in his brain to have re-absorbed by now. And can't figure out why he still has it if he has a drain in there to drain it...does he need a bigger valve to drain it? Isn't it immediate drainage? Like a funnel? Is his brain actually happy with this amount of fluid in the 2 ventricles and frontal lobes (more on the right side?), and THAT is why it retains it? ....and why when I pray for it to be gone, does it still linger? Do I need more faith?

I have learned some time ago not to ask the question WHY? It is inutile, but still, it creeps up from time to time into my consciousness.

I know I have enough faith for him to be healed of hydrocephaly. But do I have enough faith to understand why it is not yet gone? Is this all just part of God's plan for Peej--and do I just need to accept that, or fight for him to get better, be different, be better than he already is....? I feel that it's a fine line between acceptance and indifference. OF COURSE I am not indifferent, but to quietly accept God's will sometimes borders on defeat for me. And I am not easily defeated. I do not want to be defeated.

And if he still has it---(WHICH HE DOES), what are the long term effects on his growth & development & learning? Are the problems he is having now in deaf school related to that right frontal lobe pocket of liquid ? Or just hydrocephaly in his ventricles? Or does he just still need some time to catch up from those missed months of illness? They are asking if we've done a vision/neuro test on him to see if the portion of his brain that controls vision is in fact damaged...if he has a hard time seeing objects on a piece of paper, and in 3-D for example, and realizing that they represent the same thing. And how could it be that my gorgeous niece (also with hydrocephaly and a shunt that has not functioned for 3 years) is not having changes of consciousness, nausea, vomiting, coma, difficulties learning, or even worse, death? These are the risk factors associated with hydrocephaly....does she really need a shunt afterall? And since she is clearly old enough to remember another surgery (unlike Parker who I think will thankfully not remember any of these surgeries), is it worth all of her suffering and pain? Will it better her life? And can we all just function fine with some amount of hydrocephaly, as long as its not putting pressure on our brains?

Those are my questions today.

But here is the official scoop:

1-Dr. P told me yesterday that she didn't even need to look at the scan after seeing how Parker walked, talked, and interacted with us. She said he was fantastic. (I already knew that but its nice to hear to from a neurosurgeon from time to time)

2- She also told me the longer we got away from the surgery (now its 2 1/2 yrs), the less likely it is he will need a repair--ie. it gets kinked or something because he was so small when it was placed and now he is getting bigger and his brain is getting bigger, etc, that he'd need an emergency repair neurosurgery to fix it up again. No biggie. Still could happen, 50% chance. OK.

3-She said we'd do another scan in one year, then if it's good, start to space it out to every 2 years, etc.

4-She concurred with our neurologist who wants to start taking him off anti-epileptic drugs. She said usually after a patient has 2 consecutive normal EEG's, it is acceptable protocol to start weaning them & see how they do.

5-She wanted to see him run. And she did.

6-The scan still showed to me significant water space in both ventricles as well as both frontal lobes, more in the right lobe. But the good news is that the shunt is still in place. And still working.

7-For her, the scan showed a slight decrease in liquid when compared to last year's, and the best part is the brain does not seem to be suffering from the fluid--that the curvatures are still there, symbolizing there is not an inappropriate amount of pressure anywhere.

So, in essence, it's good. Upward and onward we go.

And thank the Lord for our blessings.

And we think of Christ at this time of year, and the Plan of Salvation and being with our beloved family & extended family enjoying them and our common values and love and strength we get from them, the teachings they have taught us and continue to to teach us.

And we recuperate from our many holiday parties, Hannah's baptism, losing our fantastic nanny (We miss you, Amber!), and prepare for Christmas Eve and Christmas.

And prepare for our surprise trip for our children and both sets of grandparents. We leave the 25th and return the 1st.

Life is good. We are oh-so-grateful.

God bless you all and keep you. And many continued thanks for your prayers--present and past for Parker, and anyone else who suffers. I know they are not in vain. I know that God hears and answers prayers. Sometimes it is not immediate, and it is not always the way we expect, but I know that He does. And I trust in Him.

Merry Christmas to all, and all of God's blessings for the year to come! Bring on 2012!