Quietude

Both unknown and comforting all at once. Quietude.

Jessie is making progress. She laughs and smiles. She is still in the rehab hospital; we're hopeful she'll be discharged next week. I am happy and looking to the future...no more clinging to the past. LJ still doesn't sleep through the night. I am tired.

Karate Chops and Photo Shoots and Lambs and Baseball Practice, Oh My!

Live your questions now,

and perhaps even without knowing it,

you will live along some distant day

into your answers.   --Rainer Maria Rilke

In the intervening month since my last post, I've come to the conclusion that these are the days to surrender to spirit, to the magic, to love and to the power of grace. That there my friends, is my monthly nugget of wisdom for ya.

We've had a wonderful month.  A month where the two opposing factors that continually plague me, "wanting to know and simultaneously not wanting to know how things will be?"  surrendered to the flash forward moments of a lovely reality. A reality involving Nate's intensity in baseball, his love of fishing, writing the last check to the accessibility contractor, Lew's first visit to a working wool farm with Didi and Bop in Loudon County, Nate attended a Nats game with Josh and we've had a family jaunt to Burke Lake to rent boats and go fishing on Memorial Day.

Nate at bat

Lewis Watching Big Brother

Completed bathroom photo- that's LJ's painting!

Different Angle of Completed Bathroom

Completed Ramp Addition to House

Nissy the Three Week Old Lamb, Three Bags Wool Farm

LJ Scaling the Fence at Three Bags Wool Farm

Playing with Nissy

First Time Breaking a Board at Tae Kwon Do

Lew Bug is a very social creature, but most days he prefers to talk with adults (there are many reasons but I suspect it's because its easier to communicate with the adults).  Recently LJ was invited to three peers' birthday parties & his eyes sparkle and his body flails with excited movements as I read him the invites. My mantra is I will help his legs carry him through Tae Kwon Do parties ( I am grateful for yoga squats).  I will help his hands feed himself birthday cake, juice and explore the party favors.  I will help his hand karate chop the wood in half (that's his cuteness above feeling victorious and proud after karate chopping the wood in half).  Me, I had a force-field-generating-super-power for that acute awareness of having all the other parents' eyes on me as we navigated the obstacle course and I maneuvered LJ into roundhouse kicks.  That's how I roll err shall we say cope with my insecurity, force-fields.  But above all, I will always be there to hold his hands and help his feet find the right path. It will always be harder for Lewis to fit in with his peers.  But I want him to try to do everything he can.  And when he does his best effort, he realizes he can really do quite a lot of things!

I can see his imagination working around the wonder that awaits him.  I feel his hope.  There is a kiddo behind the disability who is funny, sweet, compassionate, loves to play games, have bed time story time, be competitive, snuggly, and just downright be a kid. So here we are at the beginning of summer.  In three weeks, Lewis will get to attend a daytime summer camp for 6 weeks as will Nate.  We are all excited to get the summer fun underway.

The Next Jayson Werth- Wearing Nate's helmet which popped off every 
time the bat connected with the ball. Comical.

How To Wake Up the Neighborhood

Yep.  Sunday morning calm...it was not.  Josh snuck away to do an autocross/solo event this morning with his new Subaru WRX.  I dropped Nate off at Sunday school for two hours.  Once we returned home, LJ and I decided to head out for a stroll in the neighborhood at 9 o'clock. I had Annie the wonder-dog's leash in one hand, a big ole mug of coffee in the other hand, and LJ was at the controls of his power wheelchair.  Only problem was that a neighborhood beagle had escaped its home unbeknownst to that neighbor Cathy, and was walking up toward us in the middle of our street.  Neighbor Sean's two dogs were in their backyard and my lovely Annie started a barking contest with these other three canine creatures.  So LJ starts screaming and stopped driving his car in protest ( I do not like to call it his wheelchair.  His "car" sounds so much cooler. ).  I realize I forgot to put his glasses on to further complicate matters.  So LJ runs his car smack into the curb at a standstill, Annie is trying to lunge at stray beagle and is still barking, poor neighbor Sean comes out the front door of his house in lounge pants and bed hair, asking if we're okay.  I somehow figure out how to take the controls of LJ's car, while he cannot be consoled, he's upset because Annie and dogs are still barking, and my coffee is splashing everywhere.  Everybody's fine.  Geez.  Just wanted to go for a morning walk.

Bits and Pieces of Happiness

Sorry for the radio silence folks. I've been trying to dig out after last week.  Lew's surgery was successful.  Tests were normal, so we've had some closure there.  Honestly I never heard anything else the surgeon said regarding the procedure; I was kinda in la-la land from hearing "normal".  It's not something I usually hear these days.  The following day we had snow and ice so there was a two hour delay for school.  We've also checked off an IEP meeting,  a night of sleeplessness due to who-knows-what, a solid day of trying to make up for the lack of sleep, Kindergarten night, Josh traveling for business and of course the Super Bowl.  Nate was a happy camper because he invited two of the neighbors to watch it at our house.  More than the game (which incidentally none of the boys watched) I enjoyed seeing LJ use his gait trainer as he chased the three boys to the other end of the house, returning back to me proudly & then the boys engaging in a fun game of sneaking back up on him...only to be chased back into their room again.  I so wish I had recorded a voice memo of LJ's giggle.

One other fun note, LJ told Anna earlier today what he wanted to do with his life.  He conveyed that he wanted to open up a donut shop in Arlington and give Dunkin' Donuts a run for their money.  I said, "why yes, that's a fantastic idea! and mom and dad will help you start your business".  Uncle D, you will be his best customer;)  Bring all your buddies!  LJ wants to call it District Donut.  He then told me he didn't know how to make donuts.  This was a major business flaw. So we watched about 8 shows on baked goods, donuts and the like.  District Donut website under construction and flavor profiles in the test kitchen.

Some snapshots below from the rest of the week.  I find it a bit odd that the Tasmanian Devil is prominently placed on the hospital gown when all that's expected is for your wee baby to take a snooze.  While my guess is its supposed to make kiddos smile, we'll take any good, crazy energy we can get, Bugs Bunny and all.  Oh, popsicles also sorta help.

LJ grilling the nurses and doctors about what they were doing

An underwhelmed Nate's note after another visit from the "Tooth Fairy"
can you tell our son is a non-believer?
Dear Dad

Annie following the sun spot.  Dogs are so therapeutic!

I've been meaning to talk to you (pic captured at school by fabulous Ms. S.)

And this note came home in LJ's back pack...he really loves the computer...

Quieting Down, Chillaxin and About 9 Other Things

Everyone seems to be experiencing New England weather as of late.  It was 17 degrees this morning and the snow was still covering many roads.  As school was canceled yesterday and Josh was out of town, I set out to shovel snow while Nate and LJ created a snow slide in the backyard.  Then yesterday afternoon, Anna the Great came to my rescue and took LJ and Nate sledding (my fave part of the below video, is Anna apologizing for almost bulldozing another kid walking back up to the top! That and LJ's happy laugh.).  The kids had a ball.  This morning schools had a delayed opening. Short week for the boys as Monday and Tuesday were off as well.


LJ and Anna Sledding_Woodstock from Jenn S on Vimeo.

Like every other challenge in life, your circumstances become your reality.  And you just deal.  It's honestly been so long since our little accessibility project started, we forgot what it was like to not have plastic sheeting hanging everywhere and hammers going to work.  We also forgot what it was like to not have LJ sleeping in the guest room with one of us (but usually Josh was delegated to the task).  But I'm happy to report that things have quieted down and LJ is digging his own bed again.  We're pretty much all done with the exception of stuff on the punch list.  LJ also can rock the automatic door opener for his ramp entrance.  Your child's independence is one of the most beautiful things.

We've been working on LJ's IEP Meeting, his Re-Evaluation Meeting for "reevaluating whether our child is still a child with a disability who is in need of special education and or related services" (insert here: protocol and just going through the motions. Though I get why its there) and touring different neighborhood schools' Kindergarten classes for LJ next year.

I had a long meeting today with LJ's wonderful school speech therapist and teacher. We conferenced in an augmentative communications expert who is helping us order an Accent 1,000 through Lew's insurance.  It is basically like an iPad but more durable and sophisticated.  We ruled out the Dynavox and eye scanning systems through separate trials earlier in the year.  We hope that the Accent will provide the most success through building on language acquisition via a motor planning method (think muscle memory here but with icons and words).  Theoretically, it will go with Lew Bug wherever he goes and as he grows older and travels around his school and community setting, having it mounted right onto his power chair for ease of access (between his wheelchair and the communication device, he's get up costs about the same as a small car).

On Tuesday, January 28th, LJ will have surgery to replace bilateral ear tubes.  He'll be having an Auditory Brain Stem Response (ABR) at the same time since he'll be under anesthesia.  The last one was here.  Don't think there is hearing loss, but we've never caught a clear picture of whether there is any.  So this will be good to have some closure.

That's it for now.  Trying not to be overwhelmed by it all....For now.  I'll just flip upside down to change perspective.  Thank you to my yoga practice.

Photo of me Taken by Red Portrait

A Peek Inside and Out

I will blog a bit later about our past family and friends weekend(s) soon (cousins, grandparents, great aunts/uncles and cousins included).  In the meantime, we're making baby steps toward finishing our accessibility renovation. Here's the finished ramp and the demo of the old bathroom (great headway was made today).  Perhaps the most endearing aspect of this is the day LJ was dropped off from school by the bus, and he signed and simultaneously verbally proclaimed somewhat intelligibly " I love it!" It touched me so to see and hear him so happy...

Life Is Good...but SO Full

LJ's New Shades

We're here.  It has been a busy April.  Nothin' major to report.  Just the usual with the two kids, therapy, doctor appointments, after school activities, IEP meetings, traveling etc...

Lewie is gettin' good at driving his power chair.  No more banging his head.  He sleeps thru the night every couple nights or so.  The trick was a combo of 3 mg extended release melatonin & a regular 3 mg tab of melatonin at bedtime.  But...it could also be due to the addition of a new medicine LJ has started taking which has a drowsiness side effect.

We met with a new Pediatric Neurologist at the beginning of the month.  And she gave us lots of nuggets of information.  She recommended we try Baclofen for LJ's fluctuating tone and muscle discomfort.  NIH says Baclofen can be used to act on spinal cord nerves and reduce the severity of muscle spasms.  Dr E also referred to his particular type of CP as "Choreoathetotic".  We'd heard he was dystonic but this was a new term to us.  I googled it and the definition I pulled up was "a form of cerebral palsy characterized by choreiform (jerky, ticlike twitching) and athetoid (slow, writhing) movements."  Sounds sorta accurate but its just a label and I've dropped those. 

The Phsyiatrist we see for his physical medicine/rehab wants to try another Botox procedure (for LJ's right wrist flexor, right pec major, and right calve) but the neuro thought we might have longer term progress with the oral medication. So rather than put him under anesthesia again, we will see if the Baclofen helps. He is on a low dose and we may consider increasing the dose with time.  In the meantime another side effect is seizure, so we are closely monitoring him.

The dentist reported that LJ has no cavities! The Developmental Pediatrician was also a good visit.  We discussed LJ's sleep issues. He prescribed a sleeping medication if things get particularly bad and the melatonin doesn't help enough.  But we really have tried not to use it.  It's called Clonidine and it's typically used to treat high blood pressure but drowsiness is a side effect. The Developmental Ped also said another medication to consider down the road might be to treat anxiety.  He could see that LJ has lots of worry and given his overall picture it might help reduce his anxiety.  Rather than Ativan though he would like to see him on Intuniv for antianxiety/antidepression.  When he's a little older we may explore a play-based psychiatrist for LJ have therapy and determine what is the right route. 

Ophthalmologist says Lewis' eyes look healthy, nothing wrong with the integrity of the actual eyeballs.  However, I had sent her a video because his right eye was overactive and floating up a lot. She had us come in for an exam.  She says it's not uncommon with kiddos who have had strabismus early on.  She calls it "Dissociated Vertical Deviation" or DVD.  Here is an interesting article outlining how DVD has eluded explanation for over a century!  The doc advised that this is really more of an aesthetic thing and that while surgery would indeed correct it, the problem never goes away and would need to be re-operated on in the future.  When given the old "What would you do if this was your child?" she responded that she wouldn't operate until it was cosmetically necessary or LJ had formed an opinion on it.

In other news, the lil is farsighted!  He needs glasses.  He has trouble seeing things close up- which starts to make sense regarding his iPad and inaccuracy clicking buttons in PQ2GO. He chose his own glasses and very much enjoyed shopping for them.  It was between round blue ones or squoval (squarish-oval) green ones.  At one point he got so excited he knocked my bottled water all over the display.  Fun times.  At least it was only water.

I had a getaway to NYC for a night to celebrate Nanny's birthday.  Josh manned the fort.  I had the most amazing time eating good eats, laughing lots, celebrating my mom, sleeping in late, a nice little massage, and a play off Broadway.  The kids were all adorable when I got home.  The whole fam damily went home to Florida for my nephew's bar mitzvah this past weekend.  He did so amazing.  Didi and Bop came along for the fun.  We had lots of bribing going on to get big brother to wear his jacket and tie for the festivities.  First it was a choice between wearing his jacket or his tie.  But then just to get him to wear one, we negotiated for Nate not to have to wear his dress socks.  In the end, the boys looked like little mini men and we had such a wonderful time with old friends and family.  But trips are always lots of work.

On one final note, we have some bittersweet news.  We have decided to sell our house and look for one that is more handicap accessible or can be made more accessible.  We've chosen the end of the school year to put our house on the market so that we can use the summer to find a place that works for us, hopefully very close to where we are now.  But its been crazy, crazy, crazy busy trying to get the house ready to go on the market.  I hope you all are not as pooped as I feel after reading all of this.  That's my story and I'm sticking to it.

Good Karma...at Long Last

So. I'm kinda sorry about this post because it's gonna be a brain dump and me blabbing about day to day stuff that's happened in the last 30 days.  We've been holding steady ever since LJ's ear tube surgery earlier this month.  Been back to the doctor twice to be sure the ears aren't infected and the tubes looked good.  We're still running pretty low on sleep- so that much hasn't changed.  And we're changing Lewis Jack's name to Harvey Headbanger.  He has resorted to banging his head on the wall, either because it feels good, or to get our attention or because he has always sort of thrust his weight backwards due to his hyper-tonicity and since he's getting bigger maybe it's just his natural proclivity. 

We don't know what the answer is.  Not to make light of it either.  It has pretty much freaked me out.  Is it pain?  Is he frustrated because he cannot sleep? We've tried talking to him to get some feedback but but there's only so much we can uncover with yes and no answers or asking him to point to what's bothering him.  It's like the most difficult game of charades you've ever played....except someone is gonna get hurt if you can't figure it out.  I've tried meditation with him.  I've bought toddler-size sleep sacks (Amazon.com is the best) so when his covers come off in the middle of the night he doesn't get cold.  We've had to endure uncomfortable nights sleeping on the floor alongside his bed.  We've kept his nightstand lamp on throughout the night in case he's become afraid of the dark.  We've explained its ok if he cannot sleep but we can relax and lay in our bed quietly.  He has a recorded button that calls for Mommy or Daddy attached to his bed.  So why the headbanging, screaming and kicking?  We're talking several hours in the middle of the night. Ssshh! We've even tried melatonin....

Clearly, he is trying to tell us something and we just are too slow to figure it out!  This has to be the most upsetting thing in the world to me.  If only we could figure it out...to hold him close to us...to not let ourselves, his own parents, be one more person in the world that can't understand him.   So I called in for reinforcements on a solution to pad his walls so at least he doesn't end up with a brain hemorrhage!  Didi and Bop helped put together a makeshift "Sleep Safe" bed until we can determine whether or not this child needs to wear a soft helmet and whether Medicaid will cover us for realz with this mac-daddy Sleep Safe bed as a permanent solution.  Until then, we have protected him by using old memory foam stapled (staple guns are a great way to get out your frustrations with life) to leftover plywood and place against the walls surrounding his bed. Didi took some of my old curtain fabric and covered up the ugly foam to make it a little more attractive on the eye;) Thank you Didi and Bop!!

One sleep deprived day I took wheelchair matters into my own hands and tried to adjust it for LJ's growth.  Hindsight's twenty twenty cause I shoulda let the professionals tweak the chair.  Well, um, I ended up needing to go to urgent care for a coupla stitches in my finger.  Silly finger wouldn't stop bleeding.  I felt like such a wuss compared to how tough LJ is when he's in pain or has much bigger boo boos.  Stupid wheelchair- couldn't see straight and massive headache-can't wait to get rid of you!

In the DIY department, Bop crafted this beauty seen below for the bathroom.  LJ has a problem with most soap dispensers.  So Bop took a Chinese take out container, a regular soap dispenser, and poured concrete around it.  This gave it a sturdy base so that LJ wouldn't accidentally knock it over when he was trying to wash his hands.  And its reusable- when its empty we slide out the soap bottle and insert a fresh one.  Then he cut a circle out of wood to make the top a larger target for LJ's fine motor skills to be accommodated. Its got a metal bracket thingee to keep it in place so when you need to place it on a new bottle it swings out to release the top.  LJ's right hand is still tight and usually balled up in a fist, so he uses his left hand on the pump and squirts some soap onto his right fist and then he internally says his ABCs until his hands are clean.  (just kidding about that last part...I don't know what he's really saying.  Could be swearing for all we know)  Now, if I could just find some time to paint it or make it all matchy matchy with our bathroom decor we'll be all set!

LJ also has been completely obsessed with routines and schedules.  Its been a challenge. We can't get through a meal period without him repeatedly wanting to know twenty questions.  Who's coming? What's for breakfast?  What's the order I will eat that muffin, applesauce and cereal?  Will there be ice in my water?  Who's picking me up today?  What's tomorrow's school lunch? Who's picking me up tomorrow?  What therapies are after school?  When is Mommy teaching? Who is babysitting?

how ironic that I chose this routine given the first chapter of this blog post

We recently found this fabulous app for his iPad called Good Karma.  It has definitely improved the game.  We used to do this with small, square, velcro Boardmaker images but it was extremely labor intensive and took up a lot of storage space. This app is convenient to have on the iPad or your phone, and you can use stock pictures or upload personal photos from your gallery.  We've even had a little speech practice thrown in, involving LJ in the process.  For each activity we put on the schedule, we let him try to record the audio label.  He lights up when he hears himself.
When he starts getting anxious about his routine, we can access his Good Karma app, and all is good.

On a similar vein, our Cranio Sacral Massage (CST) therapist forwarded the link below.  It is the fobityy shiziitty BOMB!  Please check it out....it will surely become a valuable list of online vendors, research on typical SN topics from CVI, Communication and Equipment such as wheelchairs, gait trainers, etc.

Resources for Parents of Exceptional Children

Okay.  Thank you for sticking with me to the end of this rambling post.  I'm off to find out when the equipment people can come out to adjust LJ's hi-low chair (I'm not making the same mistake twice). They were supposed to call me back yesterday about setting up the appointment.  So now I go chase them down.  My work is never done.

Cannot Wait For Surgery Tomorrow

Big Bro Starting a Snow Ball Fight on Christmas Day

Annie the Wonder Dog!

LJ and Didi Form the Perfect Snow Ball

Happy New Year! May this be your year!






 
For the last month, our peanut has completed two full courses of amoxicillin and one full course of augmentin.  The amount of disgustingness coming out LJ's ears is the most in the history of ever; I feel like we've been to the doctor every week!  We have had little benefit from any of these antibiotics.  You see, he's lost one ear tube and the other one is dislodged but its in the wrong spot and too deep to extract in an office visit. We tried to get the procedure to extract and place two new tubes scheduled for two weeks ago.  Unfortunately we didn't get medical clearance due to a respiratory infection that LJ had.  So here we are, two weeks later. Poor guy is ready for a decent night's sleep and some comfortable new ear tubes.

I never thought I'd say "I'm excited for surgery!"  But in this case I will be relieved tomorrow.  We've got some ongoing eye issues as well, but I'll save that for another post (that will be another surgery separate from tomorrow's).  I'm holding hands with fear and bravery nonetheless.  The unpredictable nature of anesthesia always scares me and there's nothing worse then seeing your baby taken back to the OR.  Maybe on second thought, there is something worse.  Getting taken back to the recovery room when you see your baby for the first time afterward all hooked up to IV's and beeping monitors.  Please send you healing, positive thoughts our way.

{photography with red portrait} capturing big brother

We're celebrating Nate today.  Another trip around the sun. My little baby is 7!  The awesome, amazing, thoughtful, patient, beautiful Anna took Nate's birthday photos last week when it was a good bit warmer than usual.  I cannot decide which one I like the best, as they are all so fantastic.  Thank you Anna!

Happy Birthday to my big, little man!  You are the best big brother Lewis could ever have.  You make your Dad and I so proud.  You are so thoughtful & sensitive and you have the sweetest soul.  Oh, how I love to watch you sleep, all cozy in the layers of pillows and blankets.  I love to listen to your laughter as you experience magic and joy.  There is something so delightful when you still allow me to gently hold your hand as we cross the street heading toward the bus stop.  I love when I'm doing the laundry I find all the little trinkets you've stashed away in your pockets.  I love how you always get a dab of cookie, milkshake, toothpaste or whatever, near the curl of your mouth when you eat with gusto.  I love how you can talk a mile a minute.  I love all of it and ten times more.

I wish for you that when you see yourself, you see all the beauty that those who love you see.  I wish that all your dreams come true.

{photography with red portrait} capturing the bday boy

There are probably 365 reasons (if not more) I'm grateful for all the love and support Anna shows our family.  Anna is our caregiver & she's affectionately called "Nona" around here.  Well, she and her business partners own Red Portrait, a photography studio in Alexandria.  Ever talented, so passionate and the most beautiful person inside and out.  Well, she gifted us a gift beyond measure by coming to work on LJ's actual birthday and taking him out to do a surprise birthday photo shoot!!!  Here are some of the moments she captured.  Just brilliant.  I am captivated.  Words cannot begin to thank you enough Anna!  You have been such a blessing to us and you have impacted LJ beyond measure.