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?

Look Who's Cookin'

LJ is doing really well.  Markus, Jeni, Josh and I have all been doing the happy dance!  LJ gained weight from the last visit.  He's not quite gaining 5 grams a day as the nutritionist would like.  But he is up from 12.13 kg to 12.22 kg which roughly translates to 26.88 lbs.  On a regular growth chart this means he is in the 20%. We don't have to go back for six weeks.  In the meantime we will come up with a plan for further water reduction via gtube over the next week.

Big Blueberry Eyes_LJ Cookin' June 2011 from Jenn S on Vimeo.

Our Little CSA Harvest

School is out + our CSA farm share began a few weeks ago. This week's loot included blueberries, kale, scallions, scapes, broccoli, lettuce, cabbage, cucumbers, zucchini and squash. I've been using the Vitamix blender to get LJ's zucchini and squash all liquified so I can feed it to him.  Mikey likes it! I made some vinaigrette (same recipe as last year) for salads and marinades using the scapes. I've also made some pumpkin bread which LJ insists be dipped in applesauce but otherwise is able to eat it no problem.  I plan to make some blueberry muffins tomorrow!  I can't tell you what a tremendous emotion rushes over me when I realize LJ can experience and enjoy these summer nuances. Summer is fun now that he can have seasonal favorites like a popsicle, watermelon or lemonade.  Noodles loves to eat. That is a beautiful thing.

I'm loving every minute of it.  And guess what?  News flash:  LJ has learned to drink from a cup- its only about 1/2 ounce at each meal but it's a start.  He is only receiving 180 ml of water now via gtube to insure that he isn't dehydrated.  That's it, people, 180 ml.  That's down from 480 ml of water.  We've been most successful with water at this point, but we're slowly sneaking in some V8 Splash Fusion for extra kicks and giggles:) It's more challenging on the communication-front.  He grunts and makes some noise (and will not give up) until we realize that he wants a drink.

We play a fantastic game of charades at each meal time just to figure out what LJ prefers.  When he likes to eat, he automatically asks for more graham crackers and more applesauce...or cookies depending on his mood.  Drinks are so brand new that we are still trying to figure out which modified sign works best.  The sign for juice is fingers tapping the mouth gently or the letter "j" downward in the shape of a j.  LJ can sign "eat" no problem which is one hand placing the food in his mouth.  This is very, very close to the sign for water.  The sign for water is wiggling open fingers up and out from your mouth.  I've been trying to get LJ to use the sign for drink which is a simple. natural gesture for drink. His dystonia is too severe though, and he isn't able to complete these gestures even if it is trying with his functional, left hand and arm.

Hopefully he will be feeding & drinking 100% independently of his tube.  I'm in awe.

We have our weigh-in and check up at the GI office manana.  I'm a little nervous at the possible outcomes...but I am trying to remember something Jeni told me.  LJ is calling the shots- and it's important to remember that whatever weight he might be compared to...it is only the typical weight for his age and height.  LJ is far from typical; and he can't be pegged to a growth chart because it wasn't easy for him to jump over the tube weaning hurdle. We can't expect him to be his tube-fed weight; that just wasn't his norm...it was a consequence of being tube-fed whatever that allotted protocol prescribed. Oh, I really want things to go well so we can take out this button.  Think happy thoughts for us.

Still Climbin'

Mother to Son
Well, son, I'll tell you:
Life for me ain't been no crystal stair.
It's had tacks in it,
And splinters,
And boards torn up,
And places with no carpet on the floor—
Bare.
But all the time
I'se been a-climbin' on,
And reachin' landin's,
And turnin' corners,
And sometimes goin' in the dark
Where there ain't been no light.
So, boy, don't you turn back.
Don't you set down on the steps.
'Cause you finds it's kinder hard.
Don't you fall now—
For I'se still goin', honey,
I'se still climbin',
And life for me ain't been no crystal stair.

by Langston Hughes

Daddy-O

Dad-hood...well Josh gets all A's in our book. He practices CAYGO (Clean As You Go) when cooking, plays good and bad cop equally, tries to fix everything (with duct tape) and usually succeeds, is the most awesome teacher, loves Harry Potter as much as Nate, genuinely enjoys long car trips even with two whining toddlers, demonstrates a deep appreciation (well, almost) for his dear wife, never agrees to something without listening to what is being asked, says what he feels, can be humored with 5,000 piece Lego sets, laughs when we make a joke, makes life fun & is fiercely devoted.

Thank you Josh, you are a rock. Happy Father's Day!

Captain Personality

Pure Joy: Boat Pond in Central Park

Play with Your Food

Applesauce is no longer LJ's public enemy #1. He can't get enough of the stuff - as is the case with graham crackers. We're striving for this Bert and Ernie food creation. Isn't it awesome??

Reflections

Radhe radhe radhe bolo, radhe govinda bolo!

This is a sanskrit chant that talks about celebrating change, accepting that it will be awkward, and that something divine will result when the change is manifested. Life is busy especially now that it is the end of the school year for both boys and we head into summertime.

Nate had his camper orientation this weekend for a new day camp he's attending this summer. The pool has opened and while Nate still isn't ready to cannon ball off the high dive, he certainly has a new comfort level with swimming.   He and his friend visited their school where he will attend Kindergarten next year, and he got to see a Japanese anime movie with the big kids at a school event in the school's gym. Nate's soccer tournament is also this week.  His last tennis lesson is this week.  We're all kinds of excited for Nate's pre-K graduation this week. I never really thought I would be one of those people to put much stock into a preschool graduation.  Nate is ready for next year. He still holds my hand when we are in a busy parking lot. He allows me to be affectionate most of the time.  He's growing up fast, but he still lets me be mom.  But I am actually nervous that I may cry at the PK graduation.  I'm turning out to be lame.

Seriously though, I reflect back on how many things will and are changing for LJ too.  Megan, his PT, brought over two new posterior gait trainers for Noodle to try (see Vimeo below, please excuse my awful singing voice. You may want to mute it). Earlier last week he specifically requested Daddy to feed him- a much needed reprieve for Mama. It will also be LJ's last day at this preschool, the one Nate has gone to all along and the one most of LJ's classmates will still be attending next year. It's bittersweet.  As of September 1st, we will sadly say goodbye to many of the therapists we've had through early intervention since the week we got home from the NICU.  We will be going to a new school, making new friends, acclimating to new therapists and learning new things to help him achieve his milestones.  We have follow up appointments with LJ's Physiatrist, Ophthalmologist, Neurologist  & Pulmonologist as well.  His weight check and follow up with the Gastroenterologist is June 24th!  It would be nice if I could remember this "Radhe" chant when I forget to stop and enjoy the changes! I'd settle for things just to slow down for a little bit.

Encore Performance As Compared to August 2010 Show from Jenn S on Vimeo.

Two Little Pumpkins

Congratulations to Aunty J and Uncle J!!!  We couldn't be happier that Josh's sister and brother-in-law finally got to meet their twins today (after 48 hours of labor).  I wish we lived closer so I could lend a hand, clean the house and make some hot meals.  Can't wait to love on them too.  Sadly, they're not in the states which makes it a bit more challenging. Josh will be traveling soon to send our hugs and kisses.

There is still such a turbulence in me when babies are born- a yearning for the perfect birth story; a panic; funny minds that they are. My memory just cannot be erased and I reflect on the grief and terror of losing everything I had imagined for my boys. This insane, unknowable world still sheds tears twinkling behind my lids, tears of both sadness and joy. These babies are joined by a family that is so full of love, the foundation for any home, and we have all  been praying for their safe delivery ever since we found out about them. Happy birthday and welcome to the world.

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:

Hooves on the Horse Go Clop, Clop, Clop

With everything LJ has been going through concerning the tube wean, there hasn't been much time or energy to progress in other areas.  After all, you can't put the cart before the horse! However that all changed this morning while he was at the barn visiting Dakota.  He actually rode the horse. The. Entire. Time.  He's been going for the last month on a routine basis and he has refused to stay on Dakota for any length of time.

Lew looked like a professional jockey.  He was awesome today; actually enjoyed himself at hippotherapy.  No tears or tantrums...just singing songs like the Hooves on the Horse ( sing it to the tune of Wheels on the Bus, and you get the idea ).  The only time he got uncomfortable is when the singing stopped and he lifted his hands to sign for "more" songs.  He immediately started grabbing for the handlebar. The barn has a mirror where he can see himself riding on top of Dakota.  He got a kick out of that too.  Here are some photos.

Only Thing Missin' is the Crepe

Nate Feeding LJ a Banana with Nutella! He is a proud big brother.

Don't Worry, Be Happy

Recap of recent events:  LJ has maintained his weight since the tube wean despite having an ear infection and feeling uncomfortable.  He has the worst sweet tooth known to man. He has become completely averse to anyone besides me, myself and I feeding him (though Emily more luck than anyone else).  This makes for challenging mealtimes.  We cannot keep this up for the long haul so we are working on helping him bring his own hand to his mouth so he can be self-sufficient with finger foods.  We have been strategizing non-stop to figure out how to stop the two-year old tantrums when he doesn't get his peanut butter, graham crackers, popsicles, cookies or other favorite foods. 

It turns out every child does in fact need to have some green veggies and different varieties of protein.  We continue to search for the magical item(s) that might be accepted into LJ's repertoire of food. This week I bought some tofu, Barilla Plus pasta and some whey protein powder suplement.  I was successful at getting LJ to try the tofu, some basil pesto and also some Spanikopita all in a weeks work....as long as it was all washed down with some Nutella or peanut butter (what crazy combinations!).  All the while we are keeping our fingers crossed that he is eating enough and will not lose any weight at his next weight check, this coming week. 

Lew's right hand has been tight this week and is also causing added concern.  His therapists and I are all having a great deal of difficulty prying it open.  It can stay fisted like this all day, and at points he has blisters and skin peeling off his palm when I finally do get it to open up.  We've been going to our therapist at Children's who has made several different, custom hand splints to try to offer his hand some relief. She has also used joint compression and brushing techniques to further resolve the situation all to no avail.  We are meeting with the Psyiatrist to discuss the post-Botox aftermath the first week in June.  It's not clear to us what our options are.  It seems to me that his hand was better off before the Botox (though I can't prove it). The Botox was effective loosening LJ's right pec and right bicep, but that's worn off and  but his hand is quite useless to him right now. One thing that has been brought up by the doc and LJ's PT and OT in the past was the use of a medication called Artane. I hate to give my wee one a medication that he will need for the remainder of his life, especially when there are side effects.  It would be so great if there were some alternative treatments!

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An incident in the grocery store earlier this week has stayed on my mind. An older gentleman asked me what was wrong with LJ's hand.  LJ was riding in the grocery cart, sporting his "resting hand splint". I explained about LJ's cerebral palsy and that due to his tone the splint gave that hand and arm some much needed relief. But of course, the root of my discomfort lies in the fact that we are stuck in no-man's land and don't know whether or how we can help LJ's hand

The guy in the store was quite nice.  I don't and can't expect everyone in the world to be as sensitive to these adversities especially when they are just kids.  We all have our different trials and challenges in life.  LJ has just been working so hard and he is so empowered by his eating since the tube wean.  I just can't let a minute go by without trying to make the world a little easier for LJ, whether that's researching alternative medicine or signing up for a new therapy. People (kids especially) can't see that he didn't ask for things to be this way.  While they aren't intentionally being mean, it still hurts.

Perhaps I was already at my breaking point for the week; perhaps all the little moments this week just made me weak.  Who really knows why we have such strength some of the time and crumble during others.  in any case, I read a beautiful, moving post that brought me to tears to complete the week. On Following Elias the Boy that Could, here's a link to the post that made me turn to the Kleenex.  I think no matter who you are and what you have gone through or are going through in life, it will hit a chord. We all just want to be worry-free.

I Love My (Grand)Mom

The name 'Mommy' means smiles,

and makes a light inside of you.

~Nate (10/ 2009)

I love my mother as the trees love water and sunshine – she helps me grow, prosper, and reach great heights.

~Terri Guillemets

IronMom

Some of you may remember the yellow "Pony" gait trainer that Noodles received in the earlier days of his mobility.  Well, that used to be Max's (of Love That Max blog fame) gait trainer. He's come quite far on the mobility-front  and so he passed it on to LJ!

We've stayed in touch over the years and we even got to meet our blog-land friend in person last year (when we were temporarily living in their 'hood for Feeding Bootcamp at St Joseph's).  If you are a mom, not just any mom (or might someday be a mom), you will enjoy the Top List of Reasons which Max's mom posted earlier today.  Perfect for putting a smile (Ellen has a great sense of humor!) on your face as we get ready to celebrate Mother's Day this weekend.

20 MORE REASONS MOMS OF KIDS WITH SPECIAL NEEDS ROCK

1. Because we are geniuses at talking our way into whatever it is that will make our children's lives easier—at restaurants, amusement parks, school, wherever.
2. Because we help people see the amazing kid behind the special needs. Put that pity away, please.
3. Because we have learned the language of disability and medical conditions, so much so that sometimes people ask if we ourselves are medical professionals. Too bad we have nobody to bill.
4. Because we are so over "typical."
5. Because we work through those not-doing-enough-for-my-child guilt trips...and move right along to feeling guilty about something else. Next!

6. Because we have endless determination, dedication and energy.*

(*This motherhood brought to you by caffeine.)

7. Because we have cried more tears than we ever thought humanly possible, but never let our kids see the sadness.
8. Because we still have a healthy sense of humor. And no cellulite! Or we do but we have no time to care!
9. Because we know that the timeline for when our kids do stuff doesn't matter. Even when our hope is running low, they somehow surprise us.

10. Because we always put ourselves last, although we know that mani-pedis are our God-given right.

11. Because we do not let our kids' habit of banging their knees rhythmically under the table or their obsession with all things purple or whatever quirk drive us crazy...usually.

12. Because we have extreme endurance—we're talking Ironwoman endurance—when it comes to dealing with the insurance company. Press 3 if you'd like to tell off a representative!

13. Because we listen to other mothers complain about the small hardships of their lives and we don't say "You think you've got it hard, sister?!" We just think it.

14. Because we keep our composure amidst all the frolicking tots at the playground, birthday parties and playdates, no matter how painful it may be.

15. Because we also keep our composure when people stare. OK, maybe we don't. HEL-LO, DIDN'T YOUR MOTHER TELL YOU THAT IT'S RUDE TO STARE?

16. Because when our children accidentally roll over our feet with their walkers or poke us in the eye when they are flailing their arms or almost knock out one of our kidneys, we smile through our pain and we do not sue them.

17. Because we spend countless hours filling out forms and doing paperwork. Where's the app for that?

18. Because just when we think our heart can't take any more, it takes more.
19. Because we will do anything in our power to make the world a safer, saner, kinder, happier, more accepting place for our kids.
20. Because, well, you tell me.

Arts and Disability

The Kennedy Center has an annual week-long festival called the "International VSA Festival" spotlighting disabled performers and artists. The MIL (otherwise known as Didi) and I went to see a performance with Gregg Mozgala called "Diagnosis of a Faun" at the Kennedy Center last June, and I was so impressed and inspired by it; but obviously life got in the way of me recapping it for you all.  Amy over at A Life Less Ordinary summed up the performance perfectly so I am not gonna even try. I've taken an excerpt from her blog post with her permission- see below.

Of course the entire time I sat stunned at how awesome this dancer was with CP!! I couldn't help but wonder how my child with the same diagnosis would eventually learn to live with his own set of challenges.  Would LJ walk with forearm crutches or would he be in a wheelchair let alone be able to balance for long enough to pirouette?   I remembered the grim diagnosis that a doctor had given us when LJ was in the NICU those first few months of his life. Where these two people's circumstances drastically different?  I cried tears of pain and joy as I thought my child isn't even able to sit or eat without assistance all wrapped up with Gregg Mozgala's profound performance which gave me hope and optimism.  At any rate, here's the synopsis as told by A Life Less Ordinary:

" Created by Tamar Rogoff, this piece investigates healing through science and art. Set (more or less) in present day, the play begins in the forest home of the Faun. A Ballerina enters the forest, capturing the Faun's attention--but during her dance, she falls and tears her tendon. The rest of the piece is set in and around a hospital, with doctors trying to heal the Ballerina. The Faun is also studied by the doctors as an example of how modern medicine would address his alignment/gait. The actors explore the juxtaposition between reality/fantasy, doctor/patient, human/beast, love/loss, empathy of looking at the whole person/stoicism of treating an acute injury. Or, something like that.


There are four players in this piece; Gregg stands out for many reasons--wearing only a loincloth, and being the only mythical creature being two obvious ones. Maybe the other theatergoers were watching the actors equally--but my focus was on Gregg and his movements. He started the play on a rock structure, at least three feet off the ground, with staggered rock steps leading up to the uneven platform. He moved all around the space; running, jumping, leaping, starting, stopping, getting up from the floor and back down again, forwards, backwards. His gait is imperfect; he has an obvious CP gait. His knees buckle in slightly; he appears to have tibial and femoral anteversion, like E. Several times during the piece I see his legs pulsing, either from fatigue or clonus. He can put both feet flat on the floor--but it seems that he has to think to do it--every time. He stands frequently with his weight on one leg, flat; the other, toes curled under, dragging slightly behind. So familiar.


I also saw a man. A grown man, independent and brave; a powerful, masculine, sexy, talented, strong man. A man, who went through the aches, pains, failures, successes, and mistakes that every person goes through while becoming a dancer. An individual who had to develop trust with a partner. Just...a guy, a performer, an artist, who happens to have CP.


My father and I got the opportunity to talk to him after the show. I hoped that we would...I wasn't really sure what to say, but it related to how he was able to move like he did. To me, he never stopped moving like a guy who had CP; but he moved wonderfully, and in a way that I hope and pray E will one day. He mentioned that growing up, all this therapists, teachers, doctors--everyone--was trying to get him to move like other people. And, why not; that's the best way to move for proper body alignment--and that was his only example. All the focus was therapy, exercise, repetition, try harder, relax, etc. He said the big breakthrough for him (in the beginning of his dance training, he said just thinking about stepping made him fall "all the time--ALL THE TIME") was putting the focus on the chest, the midline, the breath. He studied Alexander Technique, Yoga (I think), and through dance--found a way to better connect with how he moved his body. I said that sounded like a very mature concept--which he agreed. "

I think I should go see the piece again because I really have reached the point of acceptance. LJ has accomplished so much and there are so many opportunities for the future.  At that time last June, it seemed unreal to me that LJ would learn the joys of things like junk food, preschool and the circus. There was still so much pain and heartbreak.  I was not alright with the world.  I could benefit from watching the performance again- this time from a different perspective. It moved me to take that next step, put one foot in front of the other.  If the ballet is ever in your area you should go see it...you will be in awe too!