Snaps: 5th Birthday Party

Last week we got to celebrate with classmates, close family friends, both sets of grandparents, aunts and uncles and cousins (from Virginia and Florida) for a super outdoor movie party.  We're lucky it was last weekend…. today it is 35 degrees out but all LJ wanted was an outdoor movie party.  Last weekend was lovely - we're lucky to have such great family and friends.

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...

Pssst! We're 5!

LJ: two weeks old, Georgetown University Hospital DC

Unreal.  What a rocky beginning.  He's five, but still my baby!  Going thru all the photos gives me an entirely new appreciation for how far Lew has come.  What an amazing, smart little guy.  I cannot say I can't imagine life being any different.  Sometimes the best way to let go, is to honor the pain we carry. But it is as it is.  Our hearts have learned to grow from the past.

He has always had the kindest heart, best head of hair, the most infectious smile and the biggest bear hug on the planet!  And now he's even brighter, has the most generous spirit, is quite funny and he's becoming a fantastic story teller (possibly letting the world know what he's thinking soon with the aid of a new Dynavox Maestro) on top of all that.  His favorite thing to do at school is tap keys on the keyboard in the computer room followed closely by eating snack; at home, Just Dance Kids on the Wii is at the top of his list, mimicking the movement with the flick of the remote…realizing and feeling the motions and independence that most of us take for granted.

As they say, change is the only constant.  Learn to flow with the changes in your life whether difficult or easy. They are the same sides of the coin.  Day by day, moment by moment, we grow, we change. Bring on the rain.  Bring on the sunshine. There's always still a part of yourself that's always been there.

I feel so lucky to see LJ grow.

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.

Calm Heart

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work.  It means to be in the midst of those things and still be calm in your heart.”

Just like the bird's nest, we show our journey- what we see and carry on any given day. Its symbolic of all our trials and error, challenges to overcome, little victories and birdsongs of joy. Rebuilding part of our bird's nest  is necessary for us to be able to carry on, allowing us to feel safe and secure. Construction started this week!  Here is the first stage of the ramp being built leading into Lew's room. It is going to become a launching pad for LJ to fly!  

Ramp Visuals:

Nate and Annie, inspecting the work…there will be a covered portico
so LJ doesn't melt from the elements given inclement weather;)

Footings for concrete ramp foundation 

Leading to our parking pad, the gate will be replaced.  The bus
picks LJ up just thru that opening you see.

Highs and Lows

He's Learned to Love the Ocean Just Like Mama_Taken by RedPortrait

Lately, I've been telling myself you are exactly where you need to be. I have been teaching this to my students but I'm having to relearn it myself.  I'm still struggling with connecting to the stillness and peace within.  Even after so many years.  My sweet boy is almost 5.  Five years and it is still so hard.

There's been lots of intensity as school started a few weeks ago- it's Lew's last year before Kindergarten.  We've had some hiccups along the way (what? you need an example? well, for instance when everyone loads into the new-to-us wheelchair lift van to head out for dinner, but the van door goes on the fritz and refuses to shut.  What to do? What to do?  You can't drive the fam to the restaurant with the car door blowing in the wind. Plan B, C, D, E and F please!) but new routines have also been found. LJ's therapies have increased and the transition with his new teachers and therapists have gone well.  I've started taking sign language class with the retired Gallaudet professor and appreciate being able to improve communication with LJ. Thank you Dr. Z!  Our builder is an Universal Design Architect and they are beginning our accessible ramp and bathroom remodel for LJ this coming Monday!  Oh yeah, I also confess I've absolutely, positively over-programmed Nate this Fall with soccer, baseball, tennis and French extracurricular activities.

All these positive events have occurred simultaneously with some painful, trigger points for me that take me down to a low place.  These points of view that sneak in despite my best efforts to change my perspective and shift my energies.  Life is all about change.  The ebb and flow will still continue.  Shouldn't I take a hint from the slow gas leak that we had- the size of the bubbles depends on the intensity of the leak?  Yet, sometimes resentment turns up like a little demon.  Resentment for how things have turned out and how many challenges LJ has had and will have to face.  To wishing that children and adults alike would stop asking me why he can't walk or pointing out the differences in the way he eats and drinks.

Then it turns to annoyance with myself that I've judged someone. Confession.  Last week I judged a perfect stranger, without knowing their story.  She had walked in just before LJ and I rolled in.  She took the only wheelchair-accessible potty.  I placed blame on that stranger for causing my toddler to have an accident while waiting for the handicapped accessible stall that thereby ruined our holiday dinner mood.  Regret.  What if I could have educated that person or somehow changed the outcome of that dinner if I had asserted myself.  What should I have said differently while the school bus was loading my son's power wheelchair into the bus and the impatient stranger-lady got out of her car to ask me what was going on?  What's going on?  Deflated the rest of that morning.

So my point of view is this- to see this process through.  To keep after it.  To practice and work towards those thoughts and activities that will best illuminate a little space, a lot of balance and some sanity amidst the chaos.  Cutting our expectations for a cure is a gift we can all give ourselves.  There is no cure for being too hot or being too cold.  The ebb and flow will go on forever.  I've been coming back to a note dear friend C wrote me early on in this journey.  Gratitude for the great character lesson you gave me and the ability to appreciate and look closely at the core…

All knowledge has use, and all you have gained from this experience.  Your heart and soul are bigger.  I know no one would choose to have growth thrust upon them this way yet you choose to turn pain into love & a depth of spirit that can strengthen the people that are privileged to get to know you.

This moment, I am on the road of life.

No Longer a Kid

It's Josh's birthday! I've been working on this Coconut Layer Cake (see above) inspired by a visit to the Peninsula Grill in Charleston, SC several years ago that he loved. To the tune of a Widespread Panic song here, "I like coconuts/ You can break them open / They smell like ladies lying in the sun." Even more,  LJ enjoyed the entire baking process- from the batter testing complete with digging his entire index finger into the assembled, cooked cake as I was attempting to frost it! And not once or twice, but three times with an evil, mischievous laugh. Its only fair, man. The thing weighs just about as much as LJ does!! Everyone is welcome to come over and help us eat! We have plenty.

I've also been reminiscing throughout the day. He's the best dad! I just love this video (all the way at bottom) from the vaults. It was taken when LJ was still depending on feeding from the stomach tube and he had a lot of discomfort and difficulty sleeping.  Josh is the joy in my life.  Happy birthday!!

Coconut Cake recipe as described on www.marthastewart.com 
This delicious coconut cake recipe is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina.
YIELD:makes two 10-inch round cakes
 INGREDIENTS Nonstick cooking spray with flour
1 pound unsalted butter, preferably European-style
3 cups sugar
6 large eggs
4 1/2 cups all-purpose flour
1 1/2 tablespoons baking powder
1/2 teaspoon salt
1 1/2 cups heavy cream
1 1/2 tablespoons pure vanilla extract
1 teaspoon coconut extract

DIRECTIONS
STEP 1 Preheat oven to 325 degrees. Spray two 10-inch round cake pans with cooking spray; set aside.
STEP 2 In the bowl of an electric mixer fitted with the paddle attachment, cream together butter and sugar until light and fluffy, 5 to 6 minutes. Add eggs, one at a time, and beat until creamy, occasionally scraping down sides of the bowl using a spatula.
STEP 3 In a large bowl, sift together flour, baking powder, and salt. In a small bowl, mix together cream, vanilla, and coconut extract. With mixer on low speed, add flour mixture, alternating with cream mixture, beginning and ending with flour; beat until just combined.
STEP 4 Pour batter into prepared cake pans and bake until a toothpick inserted into the cake comes out clean, 40 to 45 minutes. Let cool completely on a wire rack before removing cakes from pans.

Robert Carter's Simple Syrup 
This simple syrup recipe is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina.
SOURCE The Martha Stewart Show, May Spring 2007
How To Cook Techniques from Martha Stewart

YIELD Makes enough for one cake

INGREDIENTS
3/4 cup water
3/4 cup sugar

DIRECTIONS
STEP 1 Place water and sugar in a medium saucepan over medium-high heat. Bring to a boil, stirring occasionally, until sugar has dissolved. Remove from heat and let cool.

Coconut Filling 
This delicious coconut cake filling is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina. YIELD: Makes enough for 1 cake INGREDIENTS 5 cups heavy cream 3 cups sugar 1 pound (4 sticks) unsalted butter 1/4 cup cornstarch 1 teaspoon pure vanilla extract 9 cups shredded sweetened coconut DIRECTIONS STEP 1 Place cream, sugar, and butter in a medium saucepan and bring to a boil over medium-high heat, stirring occasionally until sugar is dissolved STEP 2 Meanwhile, in a small bowl, mix together cornstarch, vanilla, and 1 tablespoon water. Add to cream mixture, bring to a boil, and simmer until thickened, about 1 minute. STEP 3 Place coconut in the bowl of a food processor. Pulse until coconut is finely chopped. Remove cream mixture from heat and stir in coconut until well combined. Transfer to a large baking dish; let cool. STEP 4 Cover filling with plastic wrap and chill overnight. Just before using, place mixture in the bowl of an electric mixer fitted with the paddle attachment. Beat until smooth and creamy, 4 to 5 minutes

Coconut Cake Frosting
INGREDIENTS
1 cup (2 sticks) unsalted butter, room temperature
8 ounces cream cheese
1 teaspoon pure vanilla extract
5 cups confectioners' sugar
1 vanilla bean, scraped

 DIRECTIONS
 STEP 1 Place butter and cream cheese in the bowl of an electric mixer fitted with the paddle attachment; beat until creamy. STEP 2 With mixer on low speed, slowly add vanilla extract, seeds from vanilla bean, and confectioners' sugar. Continue beating until smooth and creamy, about 3 minutes

To assemble, cut cakes into thirds.  Place 2 cups of coconut custard between each layer.  Frost the cake.  Option to decorate the sides of cake with toasted, sweetened coconut.

Daddy Sings a Lullabye to LJ_January 21, 2010 from Jenn S on Vimeo.

Lovely Land and Sea

The beach feels good. Really good. The mornings have been relaxed. I've practiced yoga every morning on the beach to the sound of the waves and seagulls. I let go, I breathe, I am in the moment. Playing in the waves with the kids. Daily runs for ice cream. And then happy hour on the porch watching the kite surfers fly with amazing fluidity and freedom. Watching the pelicans soar overhead. Sipping wine, enjoying giant family dinners, sharing laughs, resting more then I have in the last few months. Puzzle mania and reading my book. Hanging out with my cousins, parents, brother and Aunt L and UV.  Ahhhh. Bliss.

Horse Sh!ft

I got to take LJ to hippotherapy today. When do boys lose their fascination with poop? I've attached the video from today's trail ride. The whole time we tagged along, Nate couldn't stop talking about the horse poop. LJ did great despite insistent pleas to remove his helmet (it was 90 degrees +). He was a total trooper and I just enjoyed being in the moment and appreciate all he is able to do these days. We've come a long way! happy trails and hope you all have a great weekend.
Horse Sh!ft from Jenn S on Vimeo.

Nate befriended Freddy the cat! the feline version of Annie the Wonder Dog

Life's A Beach, Next Stop: Isle of Palms

I am so looking forward to doing some traveling in the coming weeks. We've got our annual beach week reunion with all my extended family. I cannot wait for the family love, slower pace, good times and big home-cooked meals. I hope it will get to linger a lil bit longer even after the fun vacay is over. And then a little later on we get to visit our dear friends in Ithaca at the lake. Fun times, great friends and family and lots of laughter.

Price Checks and Bloopers!

Gratitude to Tanta, Virginia, Nanny and Babu!!! Many thanks to Glen too!  They helped us get LJ's first, new (to us) wheelchair- lift van.  It is a total game changer- to just roll right into the van and cruise.  It's meant major relief to my back for not having to lift all his heavy equipment into the back of my crossover.  The only thing Lewis has been talking about is driving his power chair and taking out his other new wheels.  We got it Sunday night...so Monday morning we went for a ride around the block before his summer school bus came, just so he could see the view from his new perspective.

Today we mounted up and headed for the grocery store after speech therapy. We asked LJ to find us the juice that started with a "V", and he drove his wheels to the right spot on the shelf.  Then as soon as we weren't concentrating he wheeled himself to the apple granola and insisted we were all out of it.  He also said we needed the house brand fish marinade (that was not on our list either).  He also proceeded to tell us that we needed to go upstairs to get more shampoo.  All a big plot so he could get to push the elevator button and take his power chair on it's first elevator ride.

The last video on this post illustrates his mad cross-walk driving skills.  He was clearly hamming it up for my camera!  Definitely keeps us on our toes.  Enjoy these two videos of Lew's adventures.
Price Check in Aisle 4 from Jenn S on Vimeo.

Power Chair Bloopers_LJ ( 4months of Learner's Permit) from Jenn S on Vimeo.

Home Sweet (Accessible) Home

On July 3rd, we moved into a new (to us) house.  We picked it mostly because it was a good fit for LJ, though it is lovely in its own right. It is within a mile of our old house.  There are bedrooms and bathrooms all on the first floor.  The lot is flat and there is a an exterior door in what is now LJ's bedroom.  Soon, we will have a ramp and a widened door that leads from his room to the the driveway.  LJ already enjoys leading tours around the upstairs in his power chair - something he couldn't do in our old house.  Very soon, and with minimal work, LJ will be able to come in and out on his own (well, sort of - as much as any 4 year old can).

There's lots of other great (and challenging) stuff too, as with any move.  Annie (our dog) loves the big fenced yard.  We have faced flooding, plumbing issues and faulty appliances since the move in (much like any new house).

Within the first few days living here though, we discovered how truly lucky we were with our choice.  Our neighbors and neighborhood are fantastic.  Nate has quickly integrated into the "posse" of neighborhood kids - they are forever coming here, or playing at one of the other houses on the block or playing kickball down the way, where there's no traffic.  Better yet, everyone we've met, especially our next door neighbors, are wonderful.  The folks next door have already helped me through a lock out situation with utmost kindness.  There's a retired Gallaudet University sign language professor (I'm enrolled in the adult ed class being taught thru the county starting in September), a pediatric occupational therapist and an adult physical therapist all neighboring our house.  How lucky are we?

The new house is keeping Josh and I extremely busy, so luckily both boys are enjoying camp and coming home tired during the week.  Nate is back at Camp Greenway, which is always a joy for him (lots of fun) and for us (organizationally brilliant).  LJ had a ball at an Arlington County tot camp a few weeks ago - it was an integrated camp that reserved several spots for special needs kiddos.  How excellent is that?  Now LJ's at Arlington county summer school.  Unfortunately, it seems like they've gotten in over their heads with summer school - buses don't come, classrooms fluctuate, it just seems off.  Still LJ is having great fun.

Josh and I are plugging away to make the new house a home.  We look forward to you visiting.

Gut Check

Thank you Nate for waking me at 5:45am the last three days to tell me you were ready to go to camp. Tie dye shirt, milk-mustache, pool towel and all.
Thank you LJ for telling anyone who would listen, that you were getting to go to camp... and it was splash day. And you were enthralled and all systems go!
Thank you yoga students encouraging me and asking me for the source of my reading in last night's class because it really resonated with you.
Thank you breath, for helping me manage the stress of our closings tomorrow and Friday. And did I mention the move to a new house?
Thank you new friendships.
Thank you school speech therapist, Mrs. B, for teaching me how to use a new communication device for LJ... in your personal time after the school year was completed.
Thank you to my husband who is learning to flow with all that is, and embracing the changes.
Thank you summer cold for reminding me not to charge forward without making the choice to take care of myself first.
Thank you new house for opening my heart to the possibilities and hope in the dreams I have for my beautiful, future life.
Thank you bravery that surrounds us all.
Thank you family and friends from around the world who support and encourage us to stay resilient and grow, even in the face of adversity.  I feel rich with your love and support.
Thank you moment to moment, because "nothing lasts forever"...the bad times nor the good times...I'm learning to be present in the moment, gut check and all & I am so thankful!!

 "Reality only exists within the present moment, everything else is a memory or a guess." Jess Nickerson

Oh, and thank you hard drive crashing and pronouncing itself "done and done" so I can unplug for a few weeks till we get settled in the new digs:)

Feed Your Soul

Accessible House

Due to our house hunt, Anna (our fabulous caregiver) being off for her wedding and honeymoon, LJ back to having a tough time sleeping at night, our impending move & the wrap-up of the school year for the boys, my posts have fallen by the wayside.  Trying super hard not to beat myself up these days.  I feel like I've been tired for the last month.  I feel like life seems to keep coming in easy waves and tidal waves- and lately I've been on a tidal wave.  That's the beauty of ebb and flow I suppose. 

The good news is that lately I've been learning to pay attention when things are good.  To lean in and connect to being present in the moment.  I've started being more observant not just when things are tidal waves, but when things are seemingly fine too.  I recently discovered that I had been neglecting myself- my safe, grounded spot.  When things get hard our tendency is to make them harder.  By turning inward, I've been learning to hold my awareness in the subtle realm instead.  And consequently, I am more able to find the quiet, stillness when things get chaotic.

And things are about to get pretty chaotic on the home-front.  The kids' last day of school is June 21st.  Our house is under contract.  We close on June 27th.  That's three 3 weeks!  But perhaps the most awesome news in this post is that we have found an accessible house that's less then a mile from our current one!  It was a completely, pleasant surprise to us that we found it so quickly and that all the stars seem to have aligned. Perhaps this is the law of good karma, who really knows? (Please, still cross everything. Just saying this out loud publicly makes me afraid I will jinx something.) But I'm staying positive.

We close on the new house June 28th. And we hope to move the first week of July so we have all summer long to get acclimated to our new digs.  The new house is move-in ready and has an open floor plan so that LJ will have lots of roaming room.  The only thing we have to do is have a ramp poured to the side entrance and have two doorways widened so they will be 36" wide.  We are also going to have a touch pad installed so that when LJ drives his motor chair or walks up to it in his walker, he will press it and his door will automatically open for him.  Lewis' room also has a full bathroom in it.  Down the road we will have the shower floor lowered into the sub-floor so that it can become a roll-in shower for him.  And there is space for us to also install a pocket door for his privacy.  All the bedrooms are on the same level as the kitchen, dining room and living room and outdoor patio. But the most crucial detail?  The lot is FLAT and we do not have a behemoth incline to contend with!

While I am sad to see us leave this house and all the stories and memories it embodies, (and yes I have my fears too but mostly its about the settlement/financing process) I LOVE the new house.  I am excited to uncover new memories.  In the spirit of making changes, and in the stretching, we expand, we grow, we change.

It's Mostly Amazing...Happy Mother's Day!

Motherhood is challenging.  And it's also mostly amazing.  I feel as though I've aged so much in the last five years.  But then I'm sure all of you have felt like this with each passing year.  Yet the answer really is to persevere.  With each curve or bend in the road, strive to not get thrown off...find your way back on track.  This has been my mantra as of late.  I've been practicing embracing life in the little moments...  from music paired to the chef's knife chopping dinner's ingredients to losing LJ's first pair of glasses amidst all the packed, moving boxes (a new pair should be ready next week) to the kids' laughter residing in truth, wonderment and joy.

No matter what role I move in and out of in my life, I've tried to do so with an open heart.  When joy has felt far away, my mama has always been there to tell me how deeply loved I am.  Mama, trust that you are so deeply loved too.  (and Mom, thank you for putting up with my challenging times as well as all my gratitude for all the joy and beauty in our other moments).  My mom (and my mother-in-law too) is my hero.  She has taught me so many life lessons and she can always clear my head of the cobwebs.  My wonderful family and friends have also shown me so much love and support.  Even though we don't get a ton of time together, I always feel my roots when I reflect on our time spent with one another.  I'm incredibly lucky to feel such a strong, wonderful connection with all of you.

One other thing that has helped me feel grounded lately is the fellowship of other extra-ordinary moms going through similar scenarios I'm going through, dealing with surgeries, IEP meetings and insurance fights.  There's this unspoken truth, that we don't want to be super-moms.  We'd really rather just be a regular mom going through the normal adventures of parenting.

It helps me tremendously to know that it can be tough doing what we do, but finding comfort knowing that we are not alone.  This world is so interconnected!  One such super mom, Laura (she happens to also be a yogi!! and they have a service dog to help detect Simon's seizures...if you recall we are still dreaming of getting a mobility dog for LJ), writes a blog called Constraint Induced about her son's journey (Simon like LJ has cerebral palsy, as well as epilepsy and hydrocephalus). Laura's pictures, quotes and stories are an inspiration to us all, as is her own beautiful spirit.  She gave me permission to share a link to her guest post on Rita Buettner's blog about perspective as a special-needs Mom, leading up to Mother's Day.  You can find it here:

10 Things A Special-Needs Mom Learned the Hard Way

We do in fact, get to decide how we show up for the challenges we're faced with.  This perspective of choice builds resilience and courage, and is a core aspect that mom's of "children with special rights" appreciate especially when we have little to no control over our obstacles.  For it is only when things start to get awkward/really uncomfortable, do we have the impetus to do something about it.  We can take all our dissatisfaction and use them as a tool for our transformation.

Thank you to all the daring Mom's out there.  Stay open to the sweetness, open to the bitterness, open to giving and open to receiving.  It's mostly amazing....and have a Happy Mother's Day!

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.

4.20.13

Happy Anniversary Josh.

Power Chair Driving School

Woot! Woot!  LJ's new power chair has arrived.  The old one just wasn't working.  We were all very concerned about the balance of weight.  It was very hard to dismantle and the cord to the joystick kept rubbing against the spokes on the wheel. So back in November we traded in the old to make way for the new.

The new one is awesome! It even has a seat elevator which LJ quickly learned to operate himself.  Here's a video of his very first drive going down the hallway at school with the amazing school PT and the wonderful owner of the DME dealer.  He was giving Lewis a few driving tips and showing LJ how to do a 360 turn as you will see :)  We are so excited for this power to improve the quality of Lew's life and the added independence he so desperately seems to crave.  Now... if more places could simply just be more accessible, life would be fab.

Beautiful Weekend

Hope your weekend was filled with family, friends and laughter
just like ours!