Please Be Seated...DMO Suit Has Arrived

It's been a bit painful.  We had a fitting in the beginning of June for a dynamic full body suit and glove.  We are hopeful this will resolve the muscle memory issues with Lewis, increase his trunk control and help him learn the correct body alignment he needs to master day-to-day tasks like independent sitting and grasping toys thereby avoiding another round of botox injections.  Nascott is the only one who does this sort of thing from the UK in this area.  They are supposed to call you once the measurements are submitted to the UK and your suit is fabricated and then shipped here.  Only, I had to call them at least twice a month since the initial fitting and measurements to stay on top of it.  The suit and glove finally arrived and we picked it up at Hospital for Sick Children this past Friday.  LJ looks like a super hero.  I don't exactly feel like one.  It has taken me a minimum of 30 minutes just to get the glove on his weaker, right hand let alone the body suit.  The suit has panels in it which cue the correct muscle groups to engage when its time to work and helps the other ones to relax!  It's hard core no pun intended! We'll get the hang of it.  Here's the superhero himself donning the new garb (which he wears now all day under his civilian clothes...except when he sleeps): 

For all you ladies out there who are willing to wait 4 months for compression hose, it's like Spanx for the body on crack!

Dear Teacher :: One Word

Too cool not to re-post this.  Its an email Ali Edwards received from a student.  She teaches workshops about writing, journaling & scrapbooking and this particular one is called One Little Word. 

dear teacher:
i apologize for not doing my homework.
i don’t know what to say. i mean. well.
it is kind of your fault.
you had me pick a word. just one little word.
so i did.
i picked
now.

it is a very tiny word, only three letters.
but see
well
i sort of got too busy living my word to do my homework.
that word.
now.
you can’t always predict what’s going to happen with her in the mix.
and
well
sometimes my homework for olw, well,
it didn’t get on the list
the now
live life list.

so my dog didn’t eat my homework.
i don’t have a dog.
i just didn’t do it.
because i was busy with that word of mine.
i took it on a vacation even.
we’ve been busy together, me and now.

me and my word
well it’s an every day thing.
we are kind of bffs and all.
but last night
i stayed up till 2am
because i couldn’t take it anymore,
me and now,
we wanted alone time together.
so i made the time in the inky quiet black of night.

i sat and listened to 4 months worth of videos
printed out 4 months of handouts and transcripts
jumped without abandon into 4 months of prompts.

and i just wanted to say
you may not see me on the discussion boards
i may not have done my homework on time
but you teach me.
you have changed me.
thank you.

i have a new friend, me and now.
the relationship has changed me
and it is all your fault.
your student

---

Bring On the Potty Party Time

It's not been an easy week.  The kids are beginning to understand just how much they miss Tango.  He was such a good friend and fierce protector.  I had to return his prescription dog food, and the store tried to give me a store credit only.  I asked to speak to the manager and had to explain how that wasn't gonna help. Everywhere I turn it seems like I keep seeing Weimaraners.  Today, Nate asked Didi a question.  He asked if you could taste things in heaven.  He also asked what was in dog’s blood.  She told him that I couldn’t answer the question about tasting in heaven as she didn’t have enough info on what it was like in heaven.  As for the blood question, she said she thought that dog’s blood was probably pretty much like human blood but the proteins were different.  Both answers seemed to work. Clearly he misses Tango and he is on his mind.  Time will heal.  Thank you for all your love and support.

BUT in other news, Lewis is starting to become interested in potty training! Woot woot!!  We may need to consider our options for a more supportive potty chair although it may be very premature.  Also, LJ has gained a little weight in the last 6 weeks.  He is up from 12.2 kg to 12.66 kg.  That's 50% on the Cerebral Palsy growth chart. The nutritionist still thinks he needs more calories in a given day.  Ideally, he needs to surpass his weight (12.7 kg) prior to the tube wean. So we have feed him more calorie dense foods. Bring on the pureed pancakes, with sausage and syrup.  And the pureed Elevation cheeseburger with french fries! It's still progress when you consider his tube is just an accessory now.  We haven't used it for food or drink in over a month.

Eulogy: Tango's Last Tango

He was completely by my side when I was going through the darkest part of my life.  It was completely unconditional love; always by my side or following just behind...sometimes so close I would even trip over him.  Always there next to LJ at the dinner table...managing to get an entire meal of the people food that LJ was just learning to enjoy and explore. Always sleeping on the floor next to Nate's bed. Tango was always looking so regal and proud with his big chest puffed out when he sat.  He was always one to enjoy a good ear scratch behind his big droopy ears.  He could shake his head and always make Nate laugh no matter what mood Nate was in.

We never wanted him to go- but we had to do what was best for Tango and we were on a steady decline ever since he was diagnosed with kidney failure last February.  Despite our wonderful vet's efforts, Tango wasn't acting like himself these past few days.  He would barely eat morsels of bread and he was limping and really lethargic. We knew his suffering was just too great this time. We knew it was best, but our hearts still ache.  Tango was 9.5 years old, which in dog years is a good old age.  He will be greatly missed and always remembered with love.

He knew his time was up and he had done his job: man's best friend. Today is a hard day.

My Littlest Heroes Photo

Many of us cave before impossible tasks, or even tasks that are just a tiny bit difficult.  No doubt life is full of challenges. Everyday offers us an opportunity to effect someone else's life.  We've had our share of difficulties.  Its how we show up for it that makes all the difference.  What transforms us is the situation.  My boys are the warriors.  Jessie is a warrior.  They are my heroes. I celebrate them, and honor them, embracing the difficult moments and the beautiful ones.

Merriam-Webster's definition of hero : a mythological or legendary figure often of divine descent endowed with great strength or ability b : an illustrious warrior c : a person admired for his achievements and noble qualities d : one who shows great courage 

To be a hero - that's no small thing. Courage.  Achieving remarkable levels of progress.  Making a difference in everyone's life, no matter what the limitations. Remarkable people. They rise to the challenge. Heroes never give up. They exhibit a grace, quiet strength and humility that inspires others.

Heroes also live with a hopeful spirit.  They remember to play after a storm with a song in their heart. In this spirit of celebrating life, we applied for this cool thing called Littlest Heroes Project.  It's a nonprofit organization comprised of photographers who donate their time to provide photo sessions for little heroes throughout the country.  We were contacted in August by a volunteer, local photographer, Dorie Howell.  And she took gorgeous photos of us at Potomac Overlook Park. The moments she captured are snapshots in time that I will truly hold close to my heart forever. I can't rave enough about what a beautiful person Dorie is and how she has blessed so many families with her gift and art of photography. LJ is also going to be one of the feature stories on Littlest Heroes website (which just recently changed their name to Inspiration Through Art).  More on that soon.  First, here are the hero pix!

School Success

To end the week on a more positive note, day three of preschool for LJ (albeit traipsing to the bus in a monsoon) is going much better.  Do not believe the picture from Wednesday's post.  He has actually been smiling and enjoying his new friends.  Here's a work sheet from Ms. Julia detailing what he was up to today. I've been getting one of these updates every day and its a nice way stay connected and keep up with Lew's daily activities.  Ms. Julia also informed us that "Lewis didn't seem to want the pizza, ate all the yogurt and was not too interested in drinking.  He ate at midline successfully. He is happy communicating and enjoying his peers." Perhaps he didn't want the pizza because he was too busy coveting his neighbor's goldfish crackers.

And here's a photo of Lewis getting off the bus today. I guess he figures there's nothing to be afraid of now.  No use fighting it.  Let's get the show on the road.  No tears.  The sun is trying to peek through the clouds.  We are all EXHAUSTED but thankful. Deep breath.  Let it all out.

Ms Suzie and LJ

And as we reflect on being thankful, let's all tell our loved ones how much they mean to us.  Our heart goes out to my brother and sister-in-law, Jordan and Kara. Her dad fought a courageous battle with cancer since November 2010. We hope you and your family find strength & peace during this difficult time. Please keep them in your thoughts.

And We're Off!

BEFORE:  Come on, Mom! Hurry up and take the picture.

AFTER: An exhausted, but happy kiddo!

BEFORE THE BUS

No. Stop. Wait.  I Don't Wanna Go!

Change is destabilizing.  It takes courage to explore something new.  Letting go of old things and accepting new things feels a little uneasy and I'm really proud of my boys.  Summer is officially over. All of us moved a few steps forward leaving behind our ball of nerves. Nate questioned whether I could "tell school I need 600 more weeks of home?"  In that same breath he told me he never had rest time at camp so why on Earth does he have to rest at school!  I knew it would be wonderful but I still can't quiet my mind.  Will my boys be safe? Will they be happy?  Will they make friends? Will they be well-nourished? I don't think many parents every really let go of these questions do they?

And on that note, Nate went to his first day of Kindergarten, Lewis went to his new preschool & Josh and I go of some of our fears and worries. We had to let go of Nate and LJ's hands today and let them learn from their personal experiences and figure out how to relate to them on their own.  We had to convince them that we were still right there for them, even if we couldn't hold their hand in the moment we were their number one cheerleader.

They both got to do some back-to-school shopping, got new backpacks and today they both got to ride the bus!  Nate has always wanted to ride the bus ever since we moved into our current house and took our first neighborhood walk together. He wondered aloud why he couldn't ride that bus and I assured him, one day...when he was old enough he would finally be able to ride the bus.  That day finally arrived and he was not disappointed. Didi & Bop greeted him at the bus stop yesterday after school, and then we had an impromptu ice cream party at Baskin Robbins.  Vanilla ice cream with gummy bears makes everyone feel special.

Despite LJ's screaming, crying, bucking fit on the bus as it took off down our road this morning, we are okay. I cried, he cried (though I put on a brave face for the kids) and Nate wanted to find a patrol guard to be LJ's buddy so he wouldn't be upset.  For the record there is another adult on the bus assisting the kids as the driver goes about their route. The new wheelchair didn't arrive in time, so Lewis rode on the bus in his old one.  Luckily, I had taken it apart and deep cleaned it this weekend!  Despite a chaotic, early morning of time constraints and tired, uncooperative boys, we are okay. We got through it and tomorrow will be a little easier for us all because of it. If not? We can always change the plan.

I am filled with wonder as we embark on a new school year. I believe in positive change. We are growing in mind, body and spirit and that means progress.  We have the strength to learn and teach ourselves. We trust in change (I just worry a lot).

See me smiling; see me celebrating. I'm excited about the Fall!

All Of Us

Smiles n Spokes

It's here!  LJ's high-to-low chassis seat and frame for school arrived today.  There are still some missing pieces that were supposed to be ordered.  I'm waiting for their ETA but for now, the timing could not have been more perfect.  School starts in a week.  The school has a second frame so that when the actual wheelchair base arrives, LJ will eventually be able to take the entire fixture onto the school bus and they will have several different options for him. The wheelchair portion is compatible with the seat we just got, and  LJ will be able to work on self-propelling.

(Shh, don't tell Nate. )The first thing Noodles did when he sat in his new chair was saddle up to Nate's lego table and he gave it a good swipe!

Who Am I?

I believe this bears repeating...

Fair

Once upon a time, Emily and I took both boys to the fair.  We met with my brother and sister-in-law and their adorable baby, Parker.  We saw the baby piglets and baby cows in the 4-H building, we made turkey callers out of dixie cups and cocktail straws...but alas did not get the turkeys' attention and Nate had a mutant ninja turtle painted on his cheek.  Nate made a chia-head out of stockings and wheat grass seeds.  LJ had his hand painted with his on-again-off-again favorite, Elmo.  Parker promptly fell asleep in his stroller.

And then there were the rides.  Emily took Nate on a super fun ride.  She also took LJ on the aptly-named ride, Wiggle Wurm.  Emily is a such a wonderful caregiver.  She takes such good care of our family.  We have been blessed with her selfless acts of service, listening ear and she seems to always look outside her own needs to help out with the boys.  Case in point, promptly after the above ride with Nate, it was Emily who looked green and a little woozie; not Nate as we had expected.
 
And then there was the food.  Emily tried a giant turkey leg.  It could have fed a couple Vikings.  She walked around with it, brought the leftovers on the car ride and it still isn't finished as of today.  Nate cooled off with an Italian ice- sweetened with a most unnatural, artificially colored sugar water.  LJ got to try out a terriyaki chicken on a stick and some lemonade (one of his favorites!).  We narrowly avoided the fried butter, thank goodness.  Although I hear it is tasty. In hindsight maybe that would help LJ gain some much needed weight!

LJ getting Uncle Dan to escort/protect us through the fairgrounds

In lieu of cotton candy, Nate decided he wanted to play the ping-pong-in-a-fish-bowl game. No duck pond games for him. Lucky him!  We were guaranteed by the carnie that he would win something. Well, so no giant banana plush toy as a prize. It appeared to me that the lip of the bowl was too small to fit their ping pong balls, so we were the proud new owners of a consolation prize:  three betta fish.  Thank you very much (can you hear the sarcasm here).  And this is when it is not the story you think it is.  He fretted over them, naming each one Superman, Batman and Evil Robot.  He insisted that we needed to buy them a bigger tank other than the fish bowl we had. We settled for aquarium rainbow gravel.  He woke me up the first morning at 6am!@#$#$%% asking if it was time for him to feed them again.  Within the first 24 hours, two out of the three fish have gone on to better seas.  Nate was greatly saddened by this event & he may need therapy when he's older.

Hi Uncle Dan and Aunt Anne! We miss you and baby Parker.

City Slicker

LJ had therapeutic riding this morning.  He was not afraid to tell everyone how he'd rather be eating applesauce and graham crackers.  Ms. V, our therapist, had to review the schedule with him multiple times.   First ride Lee Roy the horse. Then snacktime. He got to feed this lovely 2,000 pound creature an apple at the end of his session.  Big horse, Lee Roy, was really a gentle giant though.  One of the exercises involved big yellow dice, that LJ would hold at midline with both hands and let drop to the ground.  Whatever number it landed on, was how many steps he and Lee Roy could advance farther. LJ had to practice some speech by trying to give Lee Roy the "walk on" command when it was time.  It really takes a lot of core strength, trunk control and neck control to keep from doing the head bob jello neck. His body, as you can see from the video, is trying to acclimate with each shift in weight from the horse's gait.  Interestingly enough, he can keep his balance when he wants to tell me the sign for "eat".  All 27 pounds of him...on a 2,000 pound animal.  It's incredible.

Back in the Saddle_LJ August 2011 from Jenn S on Vimeo.


City Slicker_LJ (almost 3) and Lee Roy August 2011 from Jenn S on Vimeo.
It's also been awhile since I checked in.  LJ had a weight check regarding his tube weaning.  Despite the feeling that he eats enthusiastically, he hasn't gained any weight in 6 weeks.  We're at a standstill at 12.22 kg and 91 cm.  It sort of makes sense, since he was always being force fed, I mean tube fed, whatever the prescribed bolus amount was whether or not he had a full-feeling.  I don't think he was ever at his natural weight. Another contributing factor is all his activity.  He is a squirmy worm.  He kicks a lot, he tries to wriggle out of my arms, he can fold himself over to touch his shoes, completely over his legs when seated in his wheelchair.  So zero weight gain leaves us needing to supplement his oral intake with 200 extra calories a day.  We've added extra butter, oil, protein powder, pediasure, avocadoes and the like to his list of preferred foods.  We'll have another weight check in 6 weeks.  We'll see.

We met with the neurologist.  The doctor feels like LJ's main focus should be therapy. No MRI at this point is going to yield any actionable information.  The area where LJ's brain suffered the most injury, is his basal ganglia.  Its hard to tell from it's location just how significant his body was impacted but there are so many signals going through this bundle that effect his nervous system.  We continue to intensify therapies and see whether he will have verbal output and the strength to walk or sit.  So, in a nutshell.  It wasn't a bad meeting.  Just wasn't the clarification I was hoping for.

We also met with a really awesome speech therapist/technology consultant.  She met LJ and I and worked with us on his iPad for communication.  We're trying to tap into helping him communicate easier and more effectively.  It was a productive meeting and she shared a lot of knowledge and cool cause and effect apps to work on with the lil man.  We're meeting again soon so I will devote an entire post to it later.

School starts soon.  We are still having meetings to discuss evaluations and do the early childhood intervention reviews before the transition to a new special needs program through the county. I'm trying to get a meeting to revise LJ's IEP for school.  We need to add things like oral feeding goals since at the time, he hadn't been weaned from the feeding tube.  Amongst many other things, we also need to allow for the assistive technology devices. I'm following up with the rehab equipment folks to check the status of the stander and chair we had fitted for LJ back in May.  And nope, it's still not in.  The orthotic body suit and glove to avoid another round of botox still isn't in either.  And so it goes, we wait.  We call.  We follow up.  We wait.  We are spent but we are fighters.  We are hopeful parents, grandparents, brothers and sisters, aunts, uncles and friends.  We are hopeful.

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 ::

Outtakes from Ithaca

We're playing catchup from an almost perfect weekend.  We had some sleep-aversions amongst the youngest family member & a bit more rainy weather than anticipated, but otherwise we all enjoyed spending quality time with our friends.  Here are some outtakes from the weekend's zip lines, happy hours, farmers market & lake fun.  LJ had a neurologist appointment today and I'll catch you up on that later- but in essence everything is going well.  Pictures for now.

It's That Time Again

It was just last week we were packing snacks and driving twelve hours straight through. Now we're packing and heading north, to the Finger Lakes. Another weekend with friends and family experiencing more summer fun. Sweet summer days filled with ripe, blueberry picking and hanging out by the bonfire roasting marshmallows. There is going to be a birthday party in the Children's Garden and a concert in Taughanock park and of course the want and need of some good chill time hanging by the lake. We'll also test all the eateries around Ithaca (LJ has to try the Lindsay and Shortstop- now that he is a fill-fledged eater it is wild to come back after a year of all that's happened.) & attempt to finish some crazy 1500 piece puzzle. That is happiness for ya. Strength is being gained in more areas then you could ever know.

Children

Summer Pleasures

Summer is fleeting, but we are thankful for a lot of things.  The kids have loved playing on the beach and in the pool with their cousins.  We've enjoyed having wine and chatting with my cousins, walking on the beach, a bonus visit from my mom + dad, yoga and plenty of raucous family meals.  Some people say that what you love to do as adults in life, oftentimes were big (but perhaps forgotten) parts of who we were as children growing up.  We're so, so happy to make the most of the season with family and friends. Hopefully, the boys will carry these memories with them into their adulthood and forever.

Sun, Sea n Sand

Vacation is on the brain. I've got to prep the bags, grocery shop for car snacks and head down to South Carolina for some fun in the sun. Summertime and the living is easy. Well not quite. The drive is long (12 hours of 95 torture) and painful. But worth it. Can't wait to see the aunt n uncle, cousins and mom + dad, hit the pool, the beach, bikerides and yoga! I'm planning to let the waves wash it all away (ergo the pesky medical problems and annoying appointments calendar).  Puzzles n boardgames, kids gone wild, making huge meals for the extended crew etc etc. I want to read and sleep, laugh, ride bikes on the beach, and sleep and read some more. It is great fun for the entire family. Have a good week all!

Quote of the Day

Life is uncertain.  Eat dessert first.

~Ernestine Ulmer

via Fancy House Road

Happy Campers!

Here are some photos from Noodle's camp these past two weeks.  LJ made some great friends!  Of course all good things have to come to an end (camp was only two weeks)....at least until next summer.  As such, we will try to schedule some playdates with his new friends over the rest of the summer.  It really wouldn't have been possible without our fantastic caregiver, Emily, who enjoyed every sweaty minute of the camp as well.  Big shout out for all your help!

And here's big brother Nate, playing in a sprinkler.  Sorta wish I had the perfect music to play in the background...but this footage is just full of awesomeness.  These memories make me realize how happy the boys are.  It's definitely summer, but the days are flying by!  Enjoy.

Get In My Belly!

It's not a tree house!  They're broccoli trees!  Lewis tried them the other night and Mikey liked it (sans the wood picks).  He signed for more.  He thought it was funny that I asked him if he wanted to eat the trees.  The broccoli is from our farm share and the only thing I doctored it with was butter and a squeeze of lemon.  I figure the more butter the better.

LJ's been drinking fluids much more successfully too- perhaps we can attribute his new-found skill to the heat wave we've had.  He is particular about the vessel- it has to either be a stemless wine glass (that's how we roll) or his juice bear (think honey bear but obviously not honey-thick liquids).  So now the only thing LJ is receiving via his Gtube is approximately 120 ml of water! Go Lewie go!!

The Fourth

Let's get the BBQ started.  For those of you in the states, I hope you all have a great weekend with family and friends.

Be Still My Heart

I will never again take for granted the luxury of being able to speak easily and verbally what is on my mind.  It tears me apart that LJ cannot speak.  I tear up sometimes because I know that Noodles is frustrated beyond belief.  There is an eminent fear that he will be misunderstood and most of all unheard.  He has a definite opinion about what he wants to do, which food he wants to eat, which book to read or which clothes he wants to wear.  He is becoming more proficient with his iPad equipped with Proloquo2go but has not shown quick enough progress to ease the worry.  If something is too loud he expresses his displeasure by crying.  If I leave the room and he is upset, again, he voices his discontent by crying.  Noodles understands but he cannot respond.  Clearly, my achingly, beautiful child is a smart kiddo.  He's a hard worker yet his muscles give up and I love him and I ache for him.  And I feel guilty.  

Most of the time I can read his signs or movements pretty well.  Sometimes, though, he gets mad and can't muster a sound so he bucks backward and arches his back or throws himself forward in his wheelchair.  He can do some modified signs, but sometimes his lips move and there's no sound.  He watches our lips and tries to form the shape with his mouth only to come up empty-handed.  If we could just find a way to tap into his thoughts and desires...I listen with my heart and I am ashamed that I am inept at translating his cues but I still fantasize about how the words will sound.

That's where apraxia comes in.  It's entire diagnosis name is "childhood apraxia of speech" or CAS.  You can read the full NIH description for apraxia here.  But the short version is this: tell tale signs of apraxia are faulty speech motor planning and programming.  It is strongly based on neurological deficits or traumatic injury. LJ had major damage to his basal ganglia at birth, not that I know how to read the MRI's, but that's what the neurologist told us.  The basal ganglia is most notably the area in which people with Parkinson's disease lose the control of their bodily movements...just one of several neurological conditions that you may have heard about in celebrity news (read Michael J Fox and Mohammed Ali).  Unrelated to Parkinsons but no foreigner to medicine, Robert and Lynn Koegel are psychologists at UCSB (shout out to Uncle H!). They are distinguished clinicians and scientists who have done extensive research working with autistic children and are experts in helping children learn to speak. Five seems to be the magic age at which, if children will be able to speak, will have a much higher rate of success in the mainstream.  

Practice, practice and more practice.  We have two more years before we age out.  We are engaged in intensive speech therapy and have been since we began services through our early intervention program when LJ was 4 months old.  LJ has 4 hours per week of speech therapy with a PROMPT certified speech and language pathologist. He also has had countless hours of homework practiced in the home, at school, in other therapy sessions, in the grocery store and in everyday life.  I have sat on the other side of the two-way mirror while Lewis tries and tries as hard as he can to do what the SLP asks of him to no avail.  I have broken down in tears.

So as you can tell, I have been feeling a bit down.  But then today LJ's amazing speech therapist, Danielle, wrote me an email that quickly cheered me up."Also....last week...I forgot to tell you.  I was PROMPTing a word on him ...I think "up".  I did it several times to show him how.  He put his hand on my hand and pushed it away while nodding his head no.  Then spontaneously said "me".  Then he attempted to produce the word by himself. That was pretty cool!"

And that was indeed pretty cool.  In other news, the boys started camp on Monday.  Each are off to a great start- albeit exhausted by evening's onset.  Full days of water play, outdoors, sunshine, fresh air and making new friends.  While they're off gallivanting at camp, I've had a little free time on my hands to tackle some extra-curricular classes and feed my soul.  What is not to love?