Neighborhood Ride After the Rain

I'm proud of the boy Nate's becoming.

LJ is doing fine after his surgery last week.  His heel cord and hamstrings are getting some relief from the botox procedure and we're stretching him everyday.  His PT is going to see about a padding for his leg brace so it positions at his Achilles Tendon to decrease him from pistoning out. Other than a few tweaks here and there, we go in for a post-op appointment with his doctor in the beginning of June.

Both boys are doing a phenomenal job.

je t'aime mon amour

Don't forget I love you, Josh. Happy Valentine's Day! Love always wins!

"Love is at first not anything that means merging, giving over, and uniting with another...it is a high inducement to the individual to ripen, to become something in himself, to become world, to become world for himself for another's sake."

~ Rainer Maria Rilke

Been noticing how things are in my heart.  Since Jessie was transferred to a rehab hospital at the beginning of the week, the days have been like a roller-coaster, dizzying, exhausting and wagering over the soul.  Been acknowledging the emotions that subside and surface from the pleasant to the unpleasant especially since she received a feeding tube.  Doing a lot of inner work.  Trying to hold the difficult as sacred. It seems a lot of suffering begins at the surface of the mind.  Perhaps that is where we must do the work?  Starting there.  My hands are thrown up and I'll be screaming all the way to the bottom!

Summer Shenanigans

Life is full right now. Bursting at the seams, sweaty and leaving a trail of chaos as only summer can do.  Funday with Nana and Michael!

Anna aka Nana and LJ doing their thing--  she has brought so much beauty, laughter and love into our lives and will be missed tremendously next year.  We fully support her and send her our bestest wishes in her business adventures.  Bittersweet to let her go, but happy we will still have her nearby for weeknight datenights and occasional babysitting.

So Much Joy In This Face!

Grateful Just to be Grateful-- Nate had some amazing adventures on the Chester River in Maryland. Our dear friends who are moving to Ethiopa at the end of the summer were wonderful hosts. We went fishing off the dock, kayaking, stayed up way too late and all the kids spent much of the weekend swimming, catching frogs and taking turns "driving" the boat.  They took occasional breaks to watch the World Cup.  Obviously, we are going to miss you E & A!!!  So excited to travel vicariously through you and recognize what an amazing adventure you and your sweet family are about to embark on.

Nate's Happy Place- Camp Green...I know this picture may not show him smiling.  But honestly he loves it.  His day today consists of camp-wide assembly, archery, ropes, nature, lunch, swimming, karate and then mad science.  It sufficiently wears him out!  Plus he's there with his best buddy, Bennett.  The day this photo was taken was Green Day.

Camp JCC- trading roles for the day. LJ the Special Needs Director and Jessica the Happy Camper.  LJ has a thing for her!!  He also likes to be all official, complete with ID badges. So far he's enjoyed cooking, baking, swimming, a concert, crafts, playground time, dress up days and there will be an upcoming field trip to see a play (Camp asked me whether they should get a bus with a wheelchair lift for the field trip. I'm impressed with everything.)

Happy campers. Truism. Lew's friends get so excited when they get picked to ride the elevator up to the main level with him.  Lewis says his best friend is Jacob. Heart melts.

FAO "Shorts" Schwarz // New York City with Nanny and Babu.  The coolest, custom wheels from RideMakerz.  Took an hour to build.  LJ and I played the piano from the movie Big and "test drove" many cool rides.  Nanny and Babu also wined and dined us at Max Brenner's Chocolate Bar & Wa Jeal Sichuan Chili House. Nate was so stoked to order the chocolate pizza with melted milk and white chocolate meteors for dinner!

An Epic Weekend...Nearly Did Me In (We took the train up from DC.  Hopped on many busses. Walked. Ate. Saw the Gazillion Bubble Show (well LJ protested).  We came. We conquered.

Good Morning NYC's Central Park. Missing Nanny and Babu already!!

 
80s Day at Camp.  Universe, meet Madonna. Uh I mean Molly:)  She is a wonderfully entertaining, imaginative, caring person and my new work wife!  She's sassy, and kind and has a heart of gold. She's not timid either- her dad is a bee-keeper and she is not afraid to don her beekeeping suit and veil to tend to the bees and harvest their honey.  Welcome to the hive Molly!

To the tune of Single Ladies by Beyonce;)  The camp counselors are performing this song for a camp-wide assembly at the end of the week.

  

I know it must sound like such a charmed life.  I'm ready to re-live childhood and channel those carefree vibes.  Happy week to come soon in the Outer Banks with my cousins, aunt and uncle!  More pics to come soon.

Love This! Mad Lib Love Letter Circa 2011

Josh's Mad Lib Love Letter to me from 2011. Happy Valentine's Day!!!

Josh, will you be my Valentine? Lucky for all of us, we got to have that ski trip last year to Vermont with many, many smiles and laughs. Next month we're fortunate and excited to get to check out the adaptive ski program at Park City, UT!! Whoop whoop. Happy Valentine's Day.

This Is Helping Me Today...

His laugh.   It's all about the simple joys of the week.  Happy almost weekend!!



Giggalicious from Jenn S on Vimeo.

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.

iPad Extended Warranty

The below picture is proof for why you must buy the extended warranty. Unfortunately, LJ's iPad which he uses for proloquo2go, bit the dust. As it was the first generation iPad, no warranty existed at the time. Still, I think it would have cost a good sum to try repairing it. It was accidentally crushed when folding up LJ's wheelchair to put in the back of the car. You couldn't even turn it on to get to the settings screen. The Otterbox Defender case is 100% intact. As you can see, just the glass and the screen shattered to bits.

I'm off to reconfigure and reprogram the most important parts of P2GO that we lost.  The last back up was done in May.  It's a must before summer camp begins and new folks need to be able to use it for communication with LJ.

It's All About Moderation

I like to keep things balanced- I enjoy a nice glass of wine as much as anyone. Those who knows me also realize how much I love yoga.  Here's a fun you tube video about Yogi wine lovers to make you smile.

Long Live Bubble Baths

I'm sorry for the gratuitous photo of the lad.  But that smile says it all! For those of you in the states, have a happy holiday weekend.

Playing Hooky This Week

All in all, a good week was had by all.  We paid a visit to the physiatrist earlier this week.  She checked LJ's DMO suit, foot orthotics, splints and overall functionality of the muscle tone.  We're proud to report that we are not needing to do botox for the muscle tightness right now.  She feels the DMO suit is working & wants to see how things progress naturally!  Lewis is able to sit in a propped position for quite a little while before falling backward.  The thought is that once his Gtube is permanently removed in the Spring he will gain even more core strength.  No botox = really good news.

The other great news is that a new, local Hyperbaric Oxygen Therapy clinic has started seeing young patients with CP and also autism. I toured the facility on Friday and was impressed with what I saw.  The last time we did HBOT treatments we really saw an overall improvement in LJ.  Sadly they were a mobile unit and moved to Wisconsin for awhile.  That was in February 2010.  So since we are a no-go for the botox, I think we are going to try to find a way to do 20 sessions at this new HBOT place. 

And the last bit of fun news is that Nate and I are off to join my dad, brother and nephew in Park City for a little skiing and tail end of the Sundance film festival.  Nate is so thrilled to see snow.  (They got a foot of snow last week.) Whereas we had a couple inches here in NOVA which promptly melted overnight and turned our front yard into an icy mess.  That didn't matter; Nate still wanted to wear his snow boots and play outside...making crunching noise on the ground and picking up ice blocks and launching them at stationary objects.  Magic carpet ride here we come!!!  {Checking out the adaptive ski program for LJ for the next time we're there too}.

Being Elmo

I can't wait to see this documentary. From the trailer, its no wonder that Elmo represents love. Despite LJ's new friend status with Yo Gabba Gabba, I think Elmo is still his BFF.

The boys might sit through this movie too!

All Of Us

Who Am I?

I believe this bears repeating...

Words to Say What You Mean

Give sorrow words; the
grief that does not speak knits up the
over wrought heart
and bids it break.

:: William Shakespeare, Macbeth ::

Children

Quote of the Day

Life is uncertain.  Eat dessert first.

~Ernestine Ulmer

via Fancy House Road

Food for The Soul

I've heard from the Arlington County school system & LJ is eligible for Reed Elementary School- they have a special education program for preschoolers with special needs.  We had to go through some eligibility meetings back in March and then we finalized his IEP (short for Individualized Education Program) in April. The IEP is crucial for Noodles since these are all his goals set forth for the coming year as well as assistive technology to help him learn how to "learn". You can find out more here about the Reed Integration Station here. I'm thrilled with his placement, ecstatic that it will be a five day a week program, relieved that the school is 100% wheelchair accessible and I am so hopeful for all the good things to come. I'm a proud momma!

His new team will be meeting prior to September for an AsTech meeting which will consider and evaluate his current use of ProloQuo2Go on the iPad as well as make recommendations for new technology or devices.  But in a nutshell, Noodles will be receiving some PT, OT and ST during the school day which makes things much, much easier for life on the homefront.  (I'm still planning to privately supplement the therapy because he wouldn't otherwise get as much therapy as he's currently receiving) Additionally, the special education teacher is awesome! Everyone so far throughout this process has been so helpful and knowledgeable.  Ms Julia has had years of experience with every type of kiddo in the world and even was able to give her design input when the school underwent a huge renovation in 2009 (she lobbied for much more square footage in their classroom and she got it done! as well as a side room with an in-ground, sensory ball pit). I was a complete buyer though, when I learned there were several mainstream students integrated into the class and that they will mutually benefit from the experience of being exemplary role models (if not Ms. Julia fires them! kidding) and learning how to help those with disabilities all at once. We will be so, so sad to leave our caring, supportive nursery school family behind after a wonderful year of many, many firsts.

All that said, we were contacted by the physical therapist to come in for an equipment fitting to insure that if stuff needed to be ordered for LJ for the classroom next year, it would arrive in time for the big day.  Here are some snapshots of that equipment fitting.  The rehab equipment representative was awesome and even gave me some good leads on LJ's iPad stuff etc. 

LJ signed "want" while glancing in the direction of all the standers as soon as we got to the PT gym.  We spent a good, solid hour trying out different equipment.  Fingers crossed, between our insurance company and the school grants, we will be getting LJ this incredible hybrid mobility stander called the Otto Bock Squiggles Mobility Stander.  The whole kit and caboodle also fits into this stroller/wheelchair base too http://www.ottobock.com/cps/rde/xchg/ob_us_en/hs.xsl/5164.html.  It's on a chassis that allows one to adjust the height and tilt, so LJ will be enabled to move from snacktime or art activities at a lower worktable to standing and possibly maneuvering it himself once manual wheels are attached-he'll hopefully learn to self-propel from one area to another within the classroom environment. In the last picture, Noodles impressed the girls with his iPad! He has the cutest girl joining his class next year, S, who was going to be getting her own iPad for communication really soon.  She really enjoyed checking out LJ's iPad.  These kids are so high tech:-)

Only Hugs and Smiles Allowed

Brief update regarding LJ's weight check and doc appointment last week. His weight is up from the last visit- he's 12.13 kg which converts to 26.75 lbs.  The nutritionist suggested he should be gaining 5 grams a day. We're pretty much on track if you reflect on his baseline weight pre-wean. We've made some kale smoothies and some zucchini bread and surprisingly been successful at having him enjoy eating those veggies. Noodles has also downed a few steamed pork buns & some homemade meatballs a la Emily- exploring other animal proteins and adding some variety to the repertoire.  Noodles also went to his first fair, and his favorite treats were funnel cake and lemonade! He's also been consistently taking a bottle of chocolate milk each night pre-bedtime... as long as it's from Mommy.

The nurse and nutritionist both feel comfortable with how well things are going (knock on wood it stays this way).  Consequently we don't have to go in for weekly weight checks anymore.  Next weigh-in is scheduled for mid-June.  The other thing we're tweaking is a reduction in volume of water via Gtube. Since Lew is getting fluids orally, we don't need to supplement as much through his tube.

Totally unrelated but a mantra that I try to live by:

Nerves

How I'm feeling right now! We are all nervous this week. The big Tube Wean is almost here...The rest of our lives may forever be changed.

If you want to make god laugh

"If you want to make God laugh, tell him about your plans."
woody allen