Key to Soothing Pain

What is the key to soothing pain?  I keep pondering this question as my sister's future keeps teeter-tottering in the ICU at a hospital in Florida.  Since you're here with us on our journey, I wanted to share some heartache that my family is enduring. When life seems unfair and you fear the unknown, how do you ease the torment and the torture in your soul?  I decided it was too painful to stay quiet.

My sweet, beautiful, strong sister, Jess, who has touched so many lives, suffered a major stroke on Friday, January 23rd.  She has been in critical condition in the ICU since then.  She had not been well (e.g. pneumonia), but still this was a major shock.  It is bizarre and baffling the doctors as to what could cause this as her transesophogeal echocardiogram results didn't show any valvular or atrial abnormalities of her heart.  Her latest MRI does show multiple occlusions (aka blockages). The initial hypothesis was that is was possible there was a renal cortical infarct.  This in combination with the middle cerebral artery stroke raises the question of an embolic source. Still each day some new development occurs.  She cannot swallow or move her tongue.  Both sides of her body are paralyzed. She cannot sit up.  She cannot communicate. She's now been switched to stable in ICU and is breathing on a nasal cannula with 40% oxygen.

Still, nothing can stop the worry.  I am losing courage.  When you are bordering on the edge of a difficult decision where there is no good answer, how do you gather all the pieces?  I have never felt so pulled in opposing directions in my skin.  My heart aches for my parents; for the grief and pain that has cracked them open.  I know what it is like to fight for your baby, this creature who's existence matters so deeply.  It's not ever easy, but particularly when you are in the thick of it.  When your cortisol levels and adrenaline are maxed out and you're sleep deprived and sad.  At what point are we fulfilling our own wishes, but just prolonging the inevitable mourning, perhaps at the cost of her suffering? It's physically and emotionally painful for everyone involved, including Jessie.

So Palliative Care, Hospice, Rehab Institution or this tender shaky place- show us the face of compassion- and what and whom we can work with.  We are at the lowest part of ourselves...the underbelly of the Earth.  These tears are the most salty & the most intense.

I sit in pain and nausea when my sister will have no quality of life- when she is prisoner in a body that will not sit or swallow or walk or talk or eat.  It is unfair to communicate without words or hands to speak sign language.  It is cruel.  What must it be like to helplessly wait for others to help her?  How do you pick up the pieces of your heart?  How do you know what is the right thing to do when all we can hope for is something miraculous?  I know deeply that just as the bizarre weather we had this morning...as we floated between periods of sunshine and blizzard-like snow...life is bizarre and cruel and hard and joyous and bright with light.

I don't believe miracles exist but I know how "hope itself is like a star- not to be seen in the sunshine of prosperity, and only to be discovered in the night of adversity {Charles Spurgeon}." My thoughts let me down though and I go to dark places where I wish things were easier and that they had not revived her.  I have felt a tremendous weight and guilt for having had these thoughts.  I do not want her to suffer though.  She deserves so much better than this.  I want only for her to be comfortable and at peace.  I wish it could be like it was before the stroke.  I wish the transition for Jessie could be fast.

I feel so lost. Tears and loss and grieving.  Jessie, you are oceans away right now yet right beside us, but you're surrounded by love. We love you so, so much.  Peace & love & healing.  I'm gonna go drink a glass of wine now.  It's 5 o'clock somewhere.

Time To Turn Six

Lewis and Molly (his BFF)

So a rabbi once said that there's a beautiful contradiction and recognition of joy with a reminder of sorrow. There's no tears without honoring laughter. This weaves beautifully with yogic belief, we cannot have one without the other. Joy only exists because of sorrow, and sorrow only exists because of joy. They are brothers to one another, and like all siblings, they're closer than they care to admit. We are continuing to occupy that fullness of our beings. We have all sorts of beautiful contradictions in this celebration of Lew's life. We are humbled and inspired by LJ.  This day is so bittersweet. We lost and I hurt and I want it to stop. I want to let it go and find acceptance.  But we also won and I bubble up with love and he continues to teach us so much. And he is here.  And he is happy. And I breathe out gratitude for his place right next to Nate's, right there in the middle of my heart. Happy birthday Noodles Applesauce.

“But now I am mostly at the window
watching the late afternoon light.
Back then it never fell so solemnly 
against the side of my tree house,
and my bicycle never leaned against the garage
as it does today,
all the dark blue speed drained out of it.

This is the beginning of sadness, I say to myself,
as I walk through the universe in my sneakers.
It is time to say good-bye to my imaginary friends,
time to turn the first big number.

It seems only yesterday I used to believe
there was nothing under my skin but light.
If you cut me I could shine.”

~Billy Collins, from the poem “On Turning Ten”

Randoms: Total Communication Approach

A mystic mamma said that confident communication is possible when you realize you can choose to grow rather than say you can't.  Around here, we are definitely open to communication.  All types.  American sign language, signing exact English, augmented communication with a device and of course speech with verbal output.

Based on LJ's latest IEP, he is persistent in communicating his wants and needs in the classroom.  He will tell stories and recall activities that he participated in. He does this by pairing his speech with signs and AAC.  His wonderful speech therapist and special education teacher said "Although he has significant weakness in strength, coordination and intelligibility for speech, he is persistent and takes his time for speech."

He takes his time with speech.  Lately, I take my time with speech.  (No more "crazy mom" and getting stressed by the process).  The sharp words and self-doubt inside my head no longer have my permission to reside there.  Life is teaching me to move a little bit more gently.  A little bit more slowly.  LJ is teaching me to be more gentle with things as they come and as they go.

And so another preschool year is coming to a close.  A big transition this year.  The structure of the Reed School has been profound for LJ.  The integrated classroom has afforded Lew Bug opportunities which range from social opportunities, recreation, academic and therapeutic. He has progressed leaps and bounds.  Its bittersweet, but we are soon going to have to say farewell to our extended "school family", this familiar place, the big open arms of wonderful educators and therapists who have helped us along this journey.  But we are surrendering to everything in life that truly matters.  It's not a trajectory but more a deepening of understanding.  It is with a playful curiosity, that we trust LJ to rely on his own wings.

For Lew's debut in Kindergarten he will attend one of Arlington county's only elementary schools with a Communications Program and a Total Communications/ Deaf (HOH) Program.  LJ will attend the Communications Program (click here for deets) at Patrick Henry.  What matters most in life, this series of big steps and little steps, is that we slow down to take the time to notice them.  We have met with our new Communications Program "family" and are much less stressed and breathing easier about the transition.  The teachers are dedicated, assertive, curious and seem so with-it.  LJ will also have a dedicated speech therapist in his classroom that will be working side-by-side with the special ed teachers.  While it is a self-contained classroom, I am trusting the process.  His IEP stipulates that he will get to be integrated with all the other peers at lunch, recess and specials.

I knew we were on the right start when Ms. Hill said in the IEP meeting with his current IEP team this year (for next year), you can go ahead and put whatever you think works.  If we need to "Mama and I will just get together and have a meeting and...we can just change it then."  Whatever it takes to get LJ where he needs to be.  I like her a lot.  And the other special ed teacher's name is Mr. Lewis so we have that going for us too!  We've got the new communication device paperwork signed by our doctor and we submitted to insurance and we are on track for a great year (assuming the device arrives by September)!  We are right behind you, Lew!

And on a similar vane, I'm feeling proudly victorious about getting Lew's private speech therapist to agree to come do sessions at our house instead of the clinic.  We have been at the same clinic since LJ was a baby, but it is not wheelchair-friendly.  Now that LJ is 38 lbs, it is no longer possible to keep carrying him up and down the steps to get to speech therapy.  Routines are changing.  Spring break is upon us and before we know it, Summer break will be here.  My heart is wide open and ready for the unimaginable.

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.

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.

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.

Potty Fairies Don't Exist

At least this time around.  Apologies in advance.  Feel free to skip this post if potty talk doesn't interest you.  When Nate was potty training, we tried to play a game, "aim for the Cheerio". (Yes, we were silly enough to have floating cheerios in our toilet bowl). Then we tried the M&M thing. A candy bribe for each time there was a success.  Neither game must have been enough incentive though.  One M&M for each time he produced? He was over it.  But then the Potty Fairy showed up on the scene. At almost 4.5 years old, he was fully potty trained.  The Potty Fairy was similar to a Tooth Fairy.  Instead of money Nate got a small prize, like a match box car or a board book.  Mostly whatever I could find from the dollar store since it was such a long process;)

Fun letter to Nate from one of the Potty Fairies....

We weren't sure whether LJ would have either the strength to hold himself up long enough or the muscle awareness/control to work on potty training.  (Let alone whether we needed to enlist the Potty Fairy).  Bring it on cerebral palsy!  I have it on good word the Potty Fairy would have gladly delivered treats as success demanded.  However, he did it!!  He is using a plain, regular ole potty seat with handles on it.  When he feels he needs to be taken, he uses his left hand to sign potty.  The sign is the letter "p" shaken from side to side.  We help him get on and off the seat and he waves us out of the bathroom to take care of business.  And the thing that gave him enough desire to use the potty?  This beautifully crafted stamp chart.  1 for Pee.  2 for Poo. (Thank you Anna!)  No glitter glue, no candy, no bells, no whistles.  Just the desire to be like his peers at school and his big brother.

LJ is potty trained for the most part!  We've had a few accidents here and there, but its usually if we haven't planned our outings well enough.  He still wears a pull-up at night, but I am just so proud of him.  He's been coming home dry from school for the past month now.  His teacher and Bop are now working together to engineer something for the bathroom at school to prop him up while at the same time using his only functional hand to pull up his pants independently.  There's a grab bar already, but the problem is LJ only can use one hand.  No small task when his tone frequently causes him to lose his balance and he can't stand on his own.  If anyone knows of something like this that already exists, it would be great to not have to re-invent the wheel.

I'm so ecstatic not to be lugging a million pull-ups along with me every time we go out.  Potty fairies, potty charts, and big-boy pants....we are now a diaper-free household.

A Reason To Party

Meet Noodles aka Lewis.  Notice anything different?

That's right.  He no longer has his gtube button.  Let's take a trip down memory lane shall we?

   +first there was the NG tube and the DREADED feeding pump
   +several different prescription formulas that ultimately didn't sit well
   +then we had the Gtube (trying out everything from a MINI One to the Mic-Key Low Profile)
   +Farrel valve bags and Hollister clamps to combat leakage as well as reflux
   +countless times the button has been accidentally pulled out
   +numerous times cellulitis caused from a skin infection around the gtube site
   +unfathomable amounts of time spent combing the internet for facts and solutions
   +four different medications to help with an unhappy, uncomfortable stomach and intestines
   +what seems like an inordinate supply of 2 ml, 5 ml, 6 ml, 35 ml and 60 ml syringes
   +at least a half dozen tubes of calmoseptine, bacitracin and triamcinolone ointments
   +bottles and bottles of stomahesive powders
   +silver nitrate sticks to burn off excess skin forming over his port
   +gauze pads, drainage sponges and elastic, tubular dressings galore
   + more weight checks then we could keep track of
   +and obviously much, much stress and worry

The tube was officially removed today at the doctor's office.  We are going to have a big party (just as soon as I can find some time to plan an appropriate celebration. Until then we will drink copious amounts tonight!).  This day truly has been a light shining in the darkness.  Thanks everyone for all your support you have shown our family with all our feeding difficulties over the years.  A new chapter begins.

We're taking Plan D for the dental game plan.  We have an appointment on Monday with one of the very few private practicing, pediatric dentists in Northern Virginia who can perform procedures under general anesthesia at Children's Hospital in DC.  LJ will be slated to have a root canal, two cavities filled, possible tooth extraction and sealants put on all his back teeth.  We are hopeful the bad tooth can be saved and will not have to be pulled but we have little control over it since it is causing Lewis a lot of pain.

Dental Drama

Indecision makes me feel unsettled.  I wish I could tell you what we are gonna do about LJ's cavities but we don't seem to have a clear solution.  We met with the pulmonologist last week who expressed concern for LJ's airway being compromised if we get his cavities filled under some sort of sedative (eg valium or ativan).  He could aspirate if he's too conked out and unable to swallow his own secretions (which means it would go to his lungs and he could develop pneumonia).

Two cavities!! That's all we're talking about here.  Seems so ridiculous that two measly little cavities could stir up so much controversy at the home-front.  He is only 3 so I'll have to give him that.

That said, its all or nothing. We either try to get him strapped into a papoose board (think straight jacket) and go cold turkey without anything to calm him down in the regular dentist office setting & pray that we can talk to him and keep him calm enough that he won't aspirate on his own secretions.  (I'm making Josh take the morning off to help out with the hysteria.)  The alternative seems to be to have it done under general anesthesia at a different, private office where the dentist has the resources to protect kids like LJ with potential airway issues. Unfortunately, as we love our pediatric dentist, they don't have much experience with kids like LJ.  We've got a consult appointment with Office #2. There's still the chance that they may see LJ and recommend the procedure be done as an outpatient at the hospital.

I have an appointment for Office #1 to try cold turkey next Friday, March 16th.  And back up plan A is to book an appointment at Office #2 to try under general anesthesia.  Plan B, Children's Hospital.  Who knows what to do? Who knows what to do?  "We're going on a bear hunt.  We're going to catch a big one.  What a beautiful day! We're not scared....We can't go over it. We can't go under it.  Oh no!  We've got to go through it!"  ~ Michael Rosen

PS My dad is doing well.  He has a follow up appointment with the Orthopod today!  He might be going home on Thursday. Big sigh of relief.

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.

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?

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!

Botox Day

We are trying to stay calm and not let worry get the best of us.  Botox. Anesthesia. Shots. LJ is scheduled for botox injections tomororw morning in his right pectoralis major, right biceps, right flexor carpi ulnaris, right flexor digitorum superficialis, right adductor pollicis brevis and right gastrocenemius muscles.  In layman's terms, that is a whole lot of botulism poison being shot into my son's pecs, biceps, muscles that bend the fingers, wrist, thumb and calf muscles. We found out while we were at water therapy today this one of his friends is also having this procedure done by the same surgeon right after LJ's tomorrow!  Waiting is the hardest part (oh yea...and also not being able to feed him anything after midnight tonight), but at least we we'll have a friend there to while away the time.

For those of you that never realized, botox has more noble causes then reducing wrinkle lines and de-sweating armpit glands.  It's used for cerebral palsy as well.  There are varying degrees of tone with cerebral palsy, commonly referred to as hypertonia and hypotonia. I heard Noodles' referred to as dystonia for the first time last week. Hypertonia means lots of extension and stiffening of the arms and legs (spasticity is usually associated with this).  Hypotonia means really weak, almost to the point of being floppy and not being able to hold ones head up.  Dystonia means that when your child focuses real hard on x task, those muscles go into extension and it takes a while for the child to break out of it.  Heartbreaking really.... as I have watched LJ become more easily frustrated these days when he is not able to complete a task or get his wants, needs and desires across because of his motor and communication difficulties.

Tone never fully goes away.  But we're hopeful parents wishing that this intervention can bring a little relief to our brave lil guy (and avoid future surgery or medication). Thankfully he won't remember the procedure!

Looking Back:: This Time Last Year

So we've stopped whining.  Quit crying and we're trudging along.  The annual state evaluation for Noodles a few weeks back had us reflecting on how much he has endured and triumphed over 2009.  Here's a brief overview of what was said in their findings with regards to what we feel is his biggest challenge-EATING.  The gross motor (Rolling? Check.  He's started doing an army crawl to get to things on his belly; we are still working on sitting up AND walking no doubt) and fine motor is obviously still a large piece of the moving puzzle but once we can get Lewis eating everything in sight*@!, all possible future scenarios might be more clearly realized for Lewis.

He has made great strides in the last 6 months in all areas of development.  Self-regulation has been slowly improving and recent months have seen the greatest changes (one has got to think some of the improvement is HBOT doing it's thing...but in the end the cause is irrelevant).  In conjunction with Lewis' treatment team, we have been working on strategies to help him manage his GI discomfort through nutritional changes (Elecare formula rocks! as do Farrel Valve Bags) and sensory processing strategies.  As Lewis has begun to use his body and voice more (listen to the below vimeo for evidence of his budding vocal chords) and more
Recorded Sounds from LJ_February 7, 2010 from Jenn S on Vimeo.

he is now able to work through trying sensations and challenges without immediate physical intervention (i.e. holding, rocking, etc) from us.  Lewis is now able to be soothed by voices and talking and also has begun to self-sooth by sucking on and mouthing his own hands.  Lewis' sleep and reaction to tube feedings are much more appropriate and organized.  

In regard to feeding, therapy has continued to work in conjunction with the medical and nutritional teams to achieve optimal GI functioning and nutrition.  LJ, who was previously unable to tolerate the sights and smells of foods, is now expressing interest in handling and tasting foods (still primarily sweet potato, avocado, apple sauce and yogurt).  He continues to be defensive orally probably attributed to his Mom's feisty genes, but is able to tolerate more and more flavors and oral input on a daily basis.  Lewis has recently demonstrated the ability to tolerate a pacifier near his mouth and is even demonstrating some ability to use flutter-sucks on a pacifier.  Noodles responds best to a natural, respectful and slow approach to pre-feeding activities...how civilized.  

His future therapy will continue to focus on increasing his exposure to foods both orally and environmentally (sitting at the table, using his hands to explore food items), speech therapy and music therapy. Additional therapy will focus on increasing Lewis' grasp and trunk control to optimize his ability access food and facilitate healthy GI function. We might even be considering a day treatment program at The Center for Pediatric Feeding and Swallowing Disorders at St. Joseph’s Children's Hospital in Paterson, NJ.  The Kennedy Krieger Institute in Baltimore still has LJ on a waitlist for once-weekly therapy.  This other program is highly recommended by one of our feeding specialists and this would be a typical daily schedule for five weeks straight (and they can take him in MARCH!!)

9:00                                          Arrive, check in with nurse or feeding therapist

                                          **Please arrive promptly!**

9:15                                           Meal

9:45 – 11:00                            Other Therapy / Playroom

11:00                                          Meal

11:30 – 1:30                            Other Therapy / Playroom / Naptime

1:30                                          Meal

2:00 – 3:30                            Other Therapy / Playroom

3:30                                          Meal

4:00 – 4:30                            Leave to go home

Here's one of the fabulous harnesses Didi just finished sewing to help him gain optimal postural control at the table:

I can vividly remember this time last year.  I can hardly believe we've come this far. What an adventure into the unknown. I'm taking your predictions.

To Infinity and Beyond.....

HBOT started!  It was a bit of a challenge to keep LJ calm at first, despite our agreement to only withstand the oxygen administered at 1.5an atmospheric pressure.  We couldn't have a phone, camera, jewelry or synthetic clothing (there've been some isolated incidents of fires at other clinics) inside the chamber- no way to communicate with the outside world except for light-blinking and talking through some headphones.  Luckily they had these little port holes ( a la submarine-style) hooked up to TV's so we watched Toy Story for part of the time.  LJ reminded me of Buzz Lightyear with his helmet on.  It wasn't a laughing matter though when his hysteria turned into foaming at the mouth on the ascent.  We were able to signal to the technician to give us some time to calm down before continuing with the treatment.  Here's a picture for proof (see below).  The descent was uneventful.  We are doing one treatment a day for the next two weeks.  We haven't set the schedule for after that.  But be sure I will bring some of his favorite books to read to him for the future treatments! 

Tomorrow morning we have our state PIE annual assessment meeting with all of the therapists.   These are designed to help set attainable goals for the upcoming year. LJ has to meet at least one of the three criteria to qualify for services.  Fortunately, or unfortunately he meets all three.  He has at least a 25% delay, he has a diagnosis of CP and he has an abnormal condition causing a delay in his growth (aka muscle tone).  I'm sorta excited because it means we can all get on the same page and regroup. I really like checking things off a list.  On the other hand, I know he is behind.  I know he is not going to grow up to be a pro-athlete.  I am going to the ends of the earth to make life easier for him.  So this is really just a formality-one that happens to be followed up by his 15-month health assessment with the pediatrician.  The journey continues...

If....

If there was a therapy of the week club, we would be sure to join it. Did I mention that this post might be all over the place? We've just scheduled Noodles for his first HBOT session. Hyperbaric oxygen therapy is a pressurized chamber where LJ will sit while pure oxgygen is administered.

All our research concludes that there may be significant upside, even though that's based on anecdotal evidence (it's also hard to trust people when there are so many people scheming against parents who are just looking to heal their child). The downside, even according to skeptics, seems to be that we may be flushing our time and money. No different than the downside of any other therapy, when you get down to it. Since the cost and time commitment are not (terribly) prohibitive, the anecdotal evidence is compelling and the consensus seems to be that we will at least do no harm, we've decided to go for it. Perhaps in the near future there will be proof that it works.

The chamber looks like this except I'll be able to hold Lewis during the treatments and have to drive him back and forth to Rockville for 40 sessions. We are beginning on January 12th.......

I know that we can't waste time thinking about the future. But I feel so much better knowing that we are doing everything we can to give Lew a better life. If this works it might mean he doesn't need a wheelchair. Or it might mean that he won't have speech problems. Or it might mean that he won't ever need eye surgery again. We're not overly optimistic but we feel it can't hurt to try what's out there. We'll post again with pictures and updates when we've started. As you can imagine we are very anxious and nervous but at the the same time we're pretty excited about the what-ifs.

We've also hired on a musical therapist who will help us reinforce the speech therapy goals through melody and the occupational fine motor goals through the use of instruments. I can't carry a tune, and though it's nice that our friend Bubbe offered to skype with us and sing showtunes (her favorite not mine), we thought we would try a licensed music therapist. It will hopefully be a lot of fun and not seem like therapy to him. His determination and courage amazes me, but some of this therapy has got to be fun. Music therapy has even been shown to reduce pain- so at the very least we can help LJ get through retching through the use of music. Who knows, Nate might be joining in the jam session with us once we get familiar with everything. You can check out musictherapy.org for more information.

And Lewis has still been trying to flip and roll from his back to stomach alot. He's also trying to walk with assistance. So we "test-drove" a gait trainer and we are trying to work the system again so that he can get one through early intervention. It will help him learn to distribute his weight more effectively so he can start exploring things and gaining independence. Here's the ferrari version our therapist hopes we get because it has more of a cause-effect relationship with weight suspension. Up and Go Gait Trainer There is also a possibility of getting a hand-me-down version of this one depending on what the PT thinks...and obviously this would be the most feasible version http://www.adaptivemall.com/ponysize0.html Its nice to think about the little boy who used to need this- he no longer needs it as able to walk independently. I dream about those days.

What therapy is next? Anat Baniel Therapy also known as ABT? One never knows!

Countdown

Late last night, we found out that the culture taken from the sore on Lewis' scar a couple of days ago tested positive for staph. When we spoke to the nurse around midnight, they weren't sure yet whether it was anitibiotic resistant staph or not. Just in case, Lewis was put in "contact isolation". Staph on the skin isn't a big deal for healthier kids, but they have to be very careful that it doesn't spread around the NICU to kids with compromised immune systems. Luckily, it all turned out to be much ado about nothing. Contact isolation sounded scary, but it actually just means you wear a disposable gown and surgical gloves to handle the baby. A staph infection wouldn't have kept Lewis from coming home tomorrow either, assuming everything else goes smoothly. Still, it was a little difficult to take in, at first. By mid afternoon today, we learned that it wasn't the antibiotic resistant form of staph, so Lewis didn't need to be isolated. Nothing to see here, go on about your business...

With all this excitement, Nate didn't make it in to visit Noodles today, so we don't have any fun pictures. Everything else seems to be going well in preparation for tomorrow. There is a long list of stuff that parents need to complete in order to check a baby out of the NICU, but I think we finished the last of it today. (Reviewing how to measure and administer Lewis' meds and making sure we have all the right gear for his care at home).

Meantime, Lewis had a good day, isolated or not. He continues to tolerate the 30 minute feedings every 3 hours and he did well in physical therapy. He was kicking both legs and is showing some more range of motion in his arms. He's also looking to the left more readily. All these are hopeful signs and the therapist was quite pleased with his progress.

The PT was a nice followup to yesterday's meeting with the Neurologist. As mentioned yesterday, the results of the MRI were more positive than last time, but the overall prognosis is still very unclear. The neurologist thinks that Lewis is likely to have a significant level of movement disorder and is particularly concerned about his fine motor skills. Based on his examination, he felt that Lewis' problems are more acute in his arms than his legs and are not balanced side to side. His "best guess" for a diagnosis was "double hemiparetic cerebral palsy". This basically refers to movement disorders in the upper body. The level of severity can vary dramatically. At this point, we're taking all of the diagnoses with a grain of salt. The developmental pediatrician who examined Lewis a couple of weeks ago told us that his problems were much more severe in his legs and wasn't as concerned with his upper body. Ultimately, the diagnosis right now doesn't matter. The prescription is to do as much physical and speech therapy as possible and keep a close eye on Lewis' progress.

Tomorrow looks like it will be a big day - exciting and emotional in a lot of ways. Hopefully Lewis will be here to help us figure out what to say.