Please let me be obsolete!

http://www.npr.org/templates/story.php?storyld=94810949

Go to the above address- it's not a link because Blogger isn't letting me link at the moment.  Just highlight, cut, and paste the address into your browser menu and prepare to be amazed.  I heard this story on NPR early last week.  

I'm either rocking out to The Clash or getting my daily dose of somber news from NPR on my way to work.  The drive is usually 15 to 20 minutes, depending on whether I make my own coffee or not.  Anyways, I took a chance and turned on the radio.  Lately, all I hear are such frustrating stories.  Remember The Great Depression...hello!  But something told me to suck it up and get informed on this particular morning.  And bless NPR's FM, static-y heart.  They typically do a stellar job at reporting science, but this story knocked the wind out of my chest.

Parents of children with autism, you really need to read this story.  Basically, a brain/neuro-scientist may have discovered a drug that will lessen the symptoms linked to Fragile X Syndrome.  The drug will regulate, and I believe, slow down the firing between synapses.  Synapses are where most of the processing trouble occurs, especially when info is being fired back and forth too quickly.  In theory, the medication will act as a handbrake for the brain; slow down the thought traffic to ensure that proper messages are sent and received.  There are speculations that this medication will also help children across the entire PDD/ Autism spectrum.  Additionally, it may also be used in treating children with intellectual disabilities.  I was sitting in the Starbucks drive-thru line, fighting back tears of wonder and hope, while listening to this report.  And who can we credit for helping this discovery find funding and exposure?  A set of determined parents of a 19 year-old son with Fragile X- true advocates.

So why the obscure title for this posting?  Well, I shared the story's summary with a colleague that same morning.  She quickly replied, "Wouldn't this drug put you out of a job?"  My response, "Are you serious?"  This is a monumental discovery, with the potential to help millions of people.  Besides, this would be a great excuse to start on my career as an artist.

Let me know what you think after read/ listening to the story.  If that address isn't quite right, I've posted on the side of this page as a link.  

Woe is Me

I am sick as a dog, except my dogs never seem sick.  In fact, they inhabit a blissful world of sofa naps, undeserved treats, and on-demand snuggle time.  So I feel worse than a dog- more like an angered badger in a room full of needles and tar pits.  What's my gripe?  Let me run down the list: sinus infection, clogged ears, post nasal drip, sore throat, unproductive cough, achy shoulder muscles, complete lack of taste and smell, sour disposition. . .can you blame me?

My mom will be so proud of me when she reads this- I took my sick butt to the doctor's this morning, instead of indulging in my typically hysterics when malaise sets in.  Good thing I decided to mature because I also discovered I've got a fever.  Since the start of school, I have been coughed and sprayed with kiddie germs maybe a billion times.  This was inevitable.  What I do need to prevent, though, is passing this crud onto Miles.  Sadly, I haven't been able to hold him very much.  I did last night in a pinch situation.  Miles needed some mommy squeezes to fall asleep.  Now that I know I'm armed, loaded, and ready to fire this bug on passersby, I have locked myself in the bedroom.  If I see my shadow, I stay in for another six weeks.

Oddly enough, my brain has found a silver lining to my current state of blah.  The lack of taste and smell could open some interesting doors.  Depending on the length of this side-effect, I could retry all those nasty foods I haven't tolerated before.  Now, I, too, can look cool slurping back cocktail shrimp and ordering extra bleu cheese on my iceberg salads.  However, what's really running through my mind is why do I come to these oddball conclusions?  Perhaps I am becoming faint from my fevah.

The doc loaded me up on super expensive pills, and an armful of samples.  Enough samples for me to start as second career as a pharmaceutical representative.  Looks like you are running low on Nasonex pens; just let me check my brief case.  And silly me, I was hoping one good, stiff whiskey sour would knock this bug out.  (But I'd hate to waste the whiskey on uninterested taste buds).

Apparently Zobies like prunes. (Miles is a Zombie, or at least he sleeps like one- aka Never!)

Sleep Strike '08-How do you negotiate with a baby???

Miles' sleep patterns are rivaling that of a see-saw: good day, bad day, good day, bad day, and on and on and on!  Today has been a bad day.  Jesse reported that the little man has taken only three tiny cat naps, 30 minutes a piece, today.  That's it.  When I got home from work, Miles was giggling and showing off his new baby growl.  Jesse looked frazzled and wiped out, battered by non-stop baby duty.  The only naps came from 3 car rides.  Doesn't this child know of our current economic crisis?  Lord knows he listens to enough NPR with me to be a correspondent for Market Place.

Jesse and Miles are out right now, driving donuts around the downtown area.  Earlier, we took a big family walk through the historic district.  Our plans were to have Miles knocked out within the first half a mile, and then we would snag dinner while he sawed logs (snored).  Nope- silly us.  We completely forgot that the infant is calling the shots these days.  The glorious low humidity, slight breeze, blue skied afternoon was too delicious and enticing for Miles to pass up.  We walked for an hour through many yawns and spells of glassy-eyed stares.  I took Miles out of the stroller and tried to feed him to some sheep.  They were not interested as that he is not made of grass.  I told that flock his green shirt would taste similar to their grass blades, but those mutton chops didn't take the bait.  Nary a nod off until we reached the car.       

Seconds ago I got a call from Jesse.  They are almost home.  I just threw the fur monsters (our big, loud dogs) in the backyard and am doing an ancient Aztec Infant sleep dance.  Hope their drive buys us at least a few hours of solace.  This kid must run on lithium batteries or methane- so much gas from such a tiny body!  I need to let Exxon know we've got the next fossil fuel alternative hiding in our son's tummy and in the Diaper Genie.  

The men folk are now upstairs, and all is quiet.  Maybe because I've turned the monitor off; maybe because Miles has finally given up and passed out.  The Sleep Strike '08 is bound to end.  But when??? I don't think Mr. Mom will last much longer.  I might have to start smuggling Miles into school with me, concealed under baggy sweaters and overalls.  It might work, excepts I'll have to come up with a good excuse for why my boobies are squirming around.

Interfacing: Miles and the Laptop Meet

Thanks Mommies!

Since having a baby lowers the bar in terms of appropriate conversational topics, I will readily turn our attention to pooping.  Seems like Miles' discomfort is stemming from his constipation.  After I posted last night, he release some serious diapers demons.  I called for back-up on the baby monitor.  Jesse, through his gaps and watery eyes, held little Miles' "helping" hands at bay.  Though we wiped and powdered our way into victory last night, Miles is back on poop strike today.  His doctor has now upped his intake of Miralax to an entire cap, taken daily in a bottle.  That capful is equivalent to 16 ounces of prune juice.  Somebody give this kid an espresso and a bran muffin (and the Sunday Times), and we'll be right as rain.

Thanks for all the advice posted yesterday.  I think, above all, I need to use more common sense- like don't bounce Miles on my knee immediately following a bottle.  Minus one for me and his soiled onsie.  His bed has been propped at an incline for a several weeks, and that has helped with overnight spit up.  Once he pooped last night, he slept like a dream- not curled into a tiny, tightly wound ball of gas cramps and anger.  I like the idea of sleeping the car seat.  I'll suggest that Mr. Mom give that a shot tomorrow.  As for looking into yet another formula alternative, there's always soy.  Oh- the doctor also said that the low dosage of the antibiotics are more for encourage regularity as opposed to fighting an infection.  He's to take it for a month.  And finally teething- guess it was bound to happen sooner or later, and just as I was getting attached to his old man gums. . .

On a parting and more somber note, a friend of mine is in the midst of a serious tragedy.  It is not my story to tell, so I won't go into any details.  However, I ask that you send positive energy in our Williamsburg way.  Go hug and kiss your family, for they are the greatest gift ever bestowed upon us.  I'm off to kiss Miles and Jesse now.  

Sunset on my street

Desperately Seeking Advice

Miles has been in a funk for a few days now.  His pediatrician prescribed an anti-biotic, but this was over the phone.  He hasn't had a fever, and he hasn't felt clamy.  His appetite is still quite robust.  Let me list my observations, and if there any expert moms in crowd- please post your opinion.  Hopefully y'all can save us from additional frustration and co-pays. 

What little man has been going through:

-a dry cough that appears several times a day, and doesn't last for long

-a VERY difficult time going to sleep, and won't sleep for long (except in the car)

-won't sleep on his back, will curl up on his side

-extremely fussy (probably due to exhaustion)

-he chews on his hands constantly- but I don't feel any teeth bumps

-constipation, even though he's given Miralax daily

-he's eating jarred fruits and veggies with rice cereal daily

-we are using lactose free formula now

-he's give Mylicon after every feeding

-Spitting up after every feeding

Any thoughts???

Saturday- Just Miles and Mommy

The smaller one is fighting off a cold/bug, of sorts.  The bigger one is enjoying suctioning the smaller one's nose- frequently.  

Check-up update

I was mopey all day long because my fellas were headed to the official 6th month check-up, and I was going to be in meetings and testing sessions all day long.  Luckily, my final meeting of the day ended around three, at which time I made a mad dash to call Jesse.  Rarely have we ever had a good doctor's appointment, and by good I mean an appointment where we don't receive bad news.  Ever since that fateful 2 month check up,  as mentioned in my earlier post, doctors have not been my favorite pack of people.  I'm not casting any blame for the actual diagnoses, but I haven't gotten many medical reports that would make into the baby book.  (Probably the reason I go overboard with the photos and post, a little editorial compensation on my part.)

Long story short, Miles had a great appointment!  3 shots, big fuss fest, and a visit with our favorite pediatrician.  He's summary from today will be framed.  Weight, length, and head circumference are all in good percentile ranges.  His weight gain post-op has been phenomenal- just look as those Tootsie Rolls he's passing off as arms.  Miles even sat up by himself, as to brag about his new physical prowess.  Many smiles were doles out prior to the needles.  Just wish I could have been there to hear all the good news...but a daddy report will have to do for now.

So how did we celebrate Miles' 1/2 Birthday- in a giant inflatable rubber duck tub!

What Six Months Looks Like

Happy 1/2 Birthday Miles

Tomorrow will be Miles' six month birthday; I am calling it his 1/2 Birthday.  This should be a time of pure celebration, a day of parades, blimps, fireworks, and red carpets.  But tonight will be a quiet night for me; my thoughts are already drifting inward.  Somber elation, an improbable combination of emotions, is my current state.  Earlier I posted that Jesse's karyotype (preliminary results) are back, and he is not a carrier for the isochromose.  You won't find that post anymore; I deleted it from the blog.  I had concluded that now-extinct post by saying that if Jesse had been positive as the carrier, then we would have to "pack up shop" in the future children department.  I was only looking at the potential re-occurrence of Trisomy 21 as something to be avoided.  And then it hit just a few minutes ago- never in a billion years would I wish Miles weren't here, asleep across the hall, and quietly breathing on the other end of the baby monitor.  Extra DNA or not, VSD or not, uncertainty or not- whatever!  Miles is my life now, having shifted my compass from "me" to "we".  Motherhood has given my ego a much needed overhaul.  And in my earlier post, my tone felt flippant in light of all of my thankfulness and gratitude linked to my son.

I am tearing up now.  These past 6 months have packed in enough living to last a lifetime.  Perhaps the emotional exhaustion from the heart surgery is finally catching up to me, though I doubt I will ever fully grasp what we went through.  We will both carry scars forever.  His scar is from the surgeon's incision.  My scar is from having to entrust my son's life to someone else, from signing that consent document prior to the operation- the document that said he may not survive the procedure. I am scarred from seeing my little baby encased in a multitude of tubes, wires, and bandages, and looking so tiny and helpless on his huge hospital bed.  

I came across another parent blog last week that recounted how she dealt with her child's DS diagnosis.  This parent said she never felt any sadness upon learning about their child's diagnosis.  I was shocked at her ease in receiving the news.  With my eternal need to compare information and situations, I immediately felt like a jerk- I was swiftly revisited by the initial pain I felt when Down Syndrome was first mentioned by Miles' doctor, even as something we simply wanted to rule out.  I wish I could aptly describe the hour that followed our first suspicion that Miles might have DS, but it remains in snippets in my brain.  I remember dressing him in overalls and a little blue baseball cap that morning, and how excited we felt was we headed for what we thought was a routine check-up.  I will never forget that initial sting to the brain as our pediatrician took a deep breath and listed her growing concerns, fighting to keep my face expressionless as we left the examination room, how the tears formed in my eyes as I entered the waiting room, and how I started sobbing once we reached the parking lot.  After reading that entry, I felt like a bad parent for my difficulty at receiving the diagnosis.  A few days have passed since I read that post, and I am now being kinder to myself.  The entrance of Down Syndrome into our lives was a huge and surprising transition- an uninvited paradigm shift.  And if I had to bet, most parents would struggle like we did.  Regardless, I know I am not a jerk for feeling sad.  My tears that day were not for Jesse and me; they were for Miles and the challenges he will have to face.  My tears tonight are for the unnecessary stress I place on my heart.  Silly me, life is already hard enough. 

I now I look back over that day, and all the difficult days we've had since March 7th, and I can smile.  My eyes are still wet, but my heart is much lighter.  My son continues to thrive daily.  Slowly he is unlocking his potential and sharing his secrets with us.  His strength and determination to defy expectation is the greatest gift; it is the light I need to help brighten my dark moments.  I am in awe of Miles.  He is only 6 months old, but he already commands limitless respect from me.  Happy 1/2 Birthday my miracle baby!  I love you more than I will ever know.

Moving from needs to wants (and fears, knows, and smells)

I had so much fun with the "Anna needs" search that I expanded the experiment.  In addition to what I need, I peered into the Google crystal ball and learned what I want, fear, know, and smell.  The following are the choicest gems from my exploration:

Anna wants...

a cape, people!

to be forced to go to her sessions and experience herself.

to see sparks fly once in awhile.

Colin Farrell. 

the world to be just like Google.

Anna fears...

she is becoming indifferent to Curtis.

that the breakdown of language signifies the onslaught of psychic degradation.

  

Anna knows...

what the mask is for.

what it means to follow your dreams.

that she has the right to rest in peace.

Anna smells...

a rabbit.

better- much better!

the morning of the tragedy.  And it smells like chicken, in case you are wondering.

like butterflies.

As for original thoughts go, my mind is a Tilt-A-Whirl from the start of school.  8th graders are a rare breed; mutants caught in the wire between childhood and tweendom.  And 8th graders make-up about 92% of my daily social interactions.  It's no longer about me; it's about the Jonas Brothers and skate shoes.  

Every day is tainted by my longing for Miles, even the happiest of times.  I miss him so much- it hurts... maybe too much to write about because I don't want to dwell on returning to work.  This will be my last entry where I play Eyore to your Pooh Bear.  Going back had to happen; it's my turn to bring home the Bacon Bits.

Fourteen Minutes

T minus 14 minutes and counting. . .that's all the time I have before I MUST start my nightly ritual.  Seeing that my sleepy buns must be en route to school by 6:30am, my night is done my 9:30.  It's almost 9 now, and I have bottles and dishes to wash.  Dish washing is not something I enjoy, though I am currently shaped like a Maytag.  But doing the dishes is a big help to Jesse; he is truly the primary care giver at the moment.  Primarily occupied with the babe- no time to clean.  I honestly don't mind.

So what else do I have to do before hitting the hay?  Here goes: wash baby bottles and dishes, wash mommy and daddy plates and forks, pack lunch, wash coffee pot, preset coffee maker, select outfit for tomorrow, locate matching & sensible shoes, pack tote for work. . .Ugh!  What am I doing typing right now???  Too much to do, not enough time to sleep!

A quick update on my first day back- the entire day reeked of a "Wish you were here" postcard, and sender was Miles.  These are truly heartbreaking times.  I didn't know it was possible to feel homesick when stranded only 20 miles away.  

Times up- no room for editing!

My son, the sun

"You are my sunshine, my only sunshine.  You make happy when skies are grey.  You'll never dear how much I love you.  Please don't take my sunshine away!"

Anna needs...

Some of my favorite blogs (Opposite Kids and MeAnderings- see "Blogs I Heart" list) and thousands of other sites have been doing this "experiment." (Those are actually air quotes, not real quotes.)   This is an on-line experiment requiring the Google search engine and a good sense of humor.  Step One:  Determine your first name.  Check with parental units and/or birth records is doubt arises.  Step Two:  Take said proper name and compose the following phrase: "(Insert your name) needs" in the Google search window.  Step Three:  Giggle at all the weird phrases that pop up.  

Disclaimer:  If your search was anything like mine, you'll find some rather questionable like-named folks out there.  A few were a bit nasty- but whatever, it's not really you or me.  (Or is it???)  So laugh I say!

Without further ado, this is what I apparently need:

Anna needs...

to give her family a variety of vegetables

the security of parental support

a really good attorney

monitoring 24 hours a day

to be adding a little bacon grease to those beans

humility

to develop her anthropological perspectives

to go away to where all the little witches go

not to curse anymore

to be prompted to go to the bathroom

more coffee

more sleep

to try hard at cooking

a home

a boyfriend

to be excused from class

to find a toilet

new ones

If you are very literal, you'll appreciate what I did next.  I searched for "insert your name needs" and got three interesting results.  Here goes:

Insert your name needs...

-to go deeper into hock

-to be excused from work, as he has an urgent appointment with a cold pint of beer in the nearest pub

-chastising when (insert my name) decides (insert your name) needs it

Happy hunting.  I'd love to see your funniest results; just post them in the comment box.