Between Hope and Loneliness

We're having dinner together- the last of Thanksgiving leftovers.  Dad is out of town for work.  We're talking about our days.  I'm spoon feeding LJ.  He signs, "more potatoes and sauce".  Then, "more smoothie. My turn."  Out of the blue Nate says, "I want a brother who can talk." First I stare at him, stunned a bit.  Then I rally my voice and say "he can talk, honey, he just talks a different way."  He seems to let it go.  I hug my boys.

Something has happened and I can't get it out of my mind.  Why do I do this to myself?  I can't accept it and be at peace with it.  At the end of the day, these boys are all that matter most.  In another life I will learn to let things go.  In another life I will be okay with the good, the bad & the ugly.

Can't Seem to Call it Black Friday

Here's a snippet from LJ's OT session this afternoon! Wonderful.

Turkey Turkey

Thankful for all the positive we have in our lives. Most especially Lew's first turkey day where he gets to eat enjoy the mashed potatoes, turkey, stuffing, brussel sprouts, pumpkin pie and apple crisp. Happy Thanksgiving.

Where We Are Now

Just a quick update regarding LJ's pulmonology appointment. His lungs sound better! Yay. He doesn't need a follow-up til February unless it is a tough virus-causing winter. We have one more day on the antibiotic and his secretions have lessened. We do, however, need to follow up with the ENT. LJ's left ear is clogged. Though the ear tubes are in place, this could be cause for many an ear infection this winter. That's not good. On another front, I am happy to report that he is up to a whopping 13.9 kg. This is approximately 30.5 pounds!! By last Thanksgiving we had just begun a whole foods, blenderized diet. I can't believe its also been a year since LJ discovered his new love in life, pizza. We've come a long way baby! LJ has been completely weaned of his g-tube since August 1st, 2011 (meaning, no water or food has been supplemented using his feeding tube). We got the "all clear" from the GI folks for the g-tube Mic-Key button to be removed PERMANENTLY in March if all goes well through the winter! Hasta la vista gtube. It's been real. But we're ready to see you go ba-bye.

A List of Gratitude

It hasn't been a great week so far. Both boys are sick. They're on antibiotics now (Thank you Dr L!). Nate is home from school playing legos. They are both coughing and LJ will needs to visit the Pulmonologist because he has tracheomalacia and when he gets sick his chest sounds all crackly and not so healthy.  Some appointments that were supposed to happen for LJ had to be postponed due to bureaucratic paperwork with insurance. And so we wait and see when the referral will get denied or if we can reschedule the appointment.  Off to schedule the pulmonologist! I'm worn out and hope everyone sleeps better tonight...or at least affords me a nap today.

Thanksgiving is next week. Next week? It's crazy.  I am trying to plan our menu for our holiday meal and make the grocery list.  So I also made a list of things that I'm thankful for. (Alternately, it can be looked at as a list of things that makes me happy). It's times like these that it's good to reflect on how much progress we've made and how big our hearts have grown.

 1. My family
 2. My friends
 3. My home
 4. Snuggles
 5. Kindness
 6. The beach- the surf, the sand, the smell of coconuts..everything about 'em
 7. Sunshine
 8. My yoga practice
 9. Walks 
10. Sunsets
11. Wine
12. Coffee
13. Good books
14. Belly laughs
15. Weekends
16. Guacamole (chips optional)
17. DVR
18. Blueberries
19. Long, hot showers
20. LJ's iPad
21. Learning new things
22. Watching LJ pull to sit up
23. Tickle monster
24. Child's pose
25. Savasana
26. Making goofy faces
27. Playing in the sand
28. Yummy smelling candles
29. Pumpkin muffins
30. Looking through photo albums
31. Peace and quiet
32. A good night's rest
33. Jar of funny Nate quotes
34. Chair lift conversations
35. The sound of skis carving into the snow
36. Hot chocolate
37. Fires
38. Playing boardgames
39. Addicting puzzles

It's Not a Fluke

Tonight I'm playing Monopoly (the 1974 vintage where properties cost $100:) with Nate while LJ plays with Caroline.  This is what LJ was doing for the second night in a row.

Monday, already?

Is it Monday already?  I can't believe another week has flown by?  Too much going on here.  Over the last week we've been busy.  Now that November is here, it seems as though things have switched into high gear.  Our first snowfall of the season, LJ's Halloween parade (I think he was scared and he cried most of the time), Nate's Halloween parade, Josh in California for work, verbal behavior therapy, water therapy, therapeutic riding, seeing the Great Gatsby performed by the Washington Ballet with friends and Didi, meetings with LJ's speech therapist and physical therapist, scheduling future appointments, picking up prescriptions, a fitting for new orthotics, a long walk with a buddy, a coffee chat with another buddy and LJ had a playdate with a new friend (my yoga friend's daughter)...sigh. The weekend was also over-programmed.  With Nate having two soccer games, my yoga teacher training all weekend and yesterday's Daylight Saving time change (which the boys did not allow me to recapture that lost hour) I'm feeling it today. Here's a bit more update for those inquiring minds.

Orthotics- LJ has outgrown these. Since his foot has grown, his arch has changed and his gait has improved he is no longer benefiting from the original DAFO's from two years ago.  We had the orthotist cast and mold LJ's feet last week.  Nate came along for the fun and he helped Noodles pick out some snazzy, new velcro straps and patterned foot pads. Hopefully the customized orthotics will be ready in three weeks. The new ones should also help improve LJ's balance and gait. Next up, shoe shopping to fit said new DAFOs :)

DMO Suit-Its working.  Though LJ resists having it put on each day, once it is on, it is subtly changing his posture. He sits up strong and beautiful in his chair and his new  It is remarkable how well he does immediately once it is taken off.  He can hold an independent, tripod, seated position for a couple minutes.  Prior to the suit, he was only able to hold himself up for a minute or less.  One downside is the zippers can pinch the skin, especially in the groin area.  As a consequence, diaper changes become apprehensive for LJ. The other downer is that the Gtube button keeps getting caught on the suit.  It's tight and you have to be very careful when putting on and taking it off.  Last week, his button accidentally got yanked out when taking the suit off. Balloon fully inflated got pulled through the hole in his tummy.  He was not a happy camper to say the least. Nate was instrumental in helping distract LJ as it was re-inserted.

DMO Glove- The glove is not gonna work.  We're bummed.  LJ is still involuntarily fisting his right hand all the time- including when the glove is worn.  It's never in a relaxed state.  We thought we might be able to have the orthotist adjust the glove so that the fingers could be reinforced. The other idea we tossed around was tightening up the material of the glove to get a 30 degree wrist extension. Theoretically this might abduct his thumb which in turn would help allow his fingers to extend.  In the end, the therapist and the clinical director agreed that the manner in which the glove's technology works was inciting LJ's palmar grasp- similar to when babies have a palmar hand grasp on a finger. The panel of material on the palm can't be removed so no matter what way the glove was manipulated it was not going to help LJ's palmar grasp.  We have a follow up appointment with the therapist next week to see if we can get LJ a new splint casted and molded. This splint will not be functional (he won't be able to do anything fine motor when its worn) but rather will be worn at resting times sporadically throughout the day.

Verbal Behavior Therapy- Here was the latest chart from our manding sessions in October.

The good news is that we're happy to see the item requests and MO prompts increasing steadily throughout the month.  The bad news is that LJ hasn't mastered some of the targeted signs we wanted him to learn.  So we are keeping them on this months list of targeted signs.  We're also changing this month's data collection.  We are continuing the target mands daily but it will be less time intensive.  Instead of tracking all his signs we are only collecting data on the 10 signs we are targeting this month.  If we can track when Lewis does a mand/request using the proper sign 5 consecutive times he has mastered that sign and we can move on to a new sign. 

The sun is shining this morning.  My brain is spinning but I'm not complaining.  We've got quite a lot planned for this week as well.  I've got a plan and I'm looking forward to making ground on some fronts this week.

7pm announcement:  LJ just transitioned from his knees and belly to side sit to a propped, tripod seated position all by himself!!! He did it 3 times in a row if not more!!! As I cried tears of joy, Nate ran and got him his own soccer medal from last year and awarded it to LJ. Melt. And lastly, Nate gave him a kit kat bar from the  trick or treat bag.  I'm blissed out.

Happy Halloween

In Memoriam :: Esther

I'm not sure if I've told you very much about Josh’s grandmother on his mom’s side. She passed away quietly this morning.  The last couple years we spent with her, the body was failing her, but she was there, and that was all that mattered.  She was 96 – always was a good listener and just as in all her years, she was determined, quiet, a matriarch, strong and inspiring up until the last whisper.

Simply, I loved her and she loved me. I know I made her smile, and I hope that sometimes I made her worries abate (she worried a lot).  I know that Josh made her proud.  Lewis and Nate loved to hang out with her in her den watching cartoons.  Nate used to call her “Et”.  They would play a handgame at the dining room table.  She would stack her frail, beautiful, wise hand atop his hand and he would put his other hand over hers and so on and so on.  They would continue for several minutes bantering back and forth.

Her cheeks were like swatches of cotton candy & her hair was the softest pouf of silver-grey.  She always wore the pinkest of lipsticks to hide a freckle on her lip.  I’d been trying to memorize her face. I’m so lucky our boys got to know her.  This photo typifies my memory of her.

Goodbye Et.  I love you.  I miss you.  May her memory be for a blessing.  I love you.

Ctrl-Alt-Delete

Take good care of yourself today so that you can take good care of others tomorrow. Hmm. That's a thought isn't it?

So what is a more perfect thing to do than expand your wisdom, physical practice, spirituality and mindfulness?  Hit the Reset button.  I've half-way completed my yoga teacher training at JOURNEYoga- and that's my bit of exciting news.  These last two months have been intense as by completion I will have spent over 200 hours in yoga class on the weekends and Josh has been a single daddy to our boys. It's exciting and scary all at the same time. I can't help but think "am I ready for this?". What kind of a teacher will I be?  It is nearing the end of the semester but I am just beginning my studies.  The true journey has just begun.  Still, nothing compares to the challenges I have endured as a mother.  That's really the fuel for this fire.  I want to heal myself, allow for new perspectives and gain strength and breathing room...not just support LJ in his development and therapies and Nate in his perspectives and abilities.  I want to share this love of yoga that helped (still helps) me get through some really demanding times. And my light shines bright because my sense of awareness and calm has been forever heightened (gratitude!!!).  I want to share what I have learned from experiences both on and off the mat.  Oh that and LJ has never once given up or ceased to inspire me with his determination, good nature and captivating smile!  I dedicate my yoga practice to him.  To Nate.  To my two boys who have been my greatest teachers. I am a reflection of them and not the other way around.  And to my husband who has been the greatest support.

Wherever you find yourself, so much of yoga teaches you about being firmly rooted and with an open heart, grounded to everyday life.  It teaches you to observe inward and outward, be flexible in body and mind, re-energize and to let the rhythm of your breath be a constant reminder of where you are at any given point in time. We are all connected by our breath.  Without your breath, I wouldn't have my breath.  There is no duality because without the doer there is no action.  Without birth there is no death.  Without the brain there is no mindfulness.  No matter the burn, I have discovered that concentration, awareness, devotion, discipline and relaxation all can be related pieces of each other juxtaposed with intensity. They all contribute to a greater sense of how connected we all are.  We are all teachers and students.  And I celebrate awareness, resiliency and resetting the intentions in my life.  I am evermore present in today and the "now".

Resetting + Renewal = the sun peeks through.  Live. Laugh. Love.

Namaste  (that means "reverence to you" which more poetically translates to "the light in me honors the light in you.")

via YogaDork

Verbal Behavior

We're still trying to help Lewis figure out how to have a voice.  Thus we've recently started verbal behavior therapy in addition to our weekly speech therapy.  Verbal behavior therapy is similar to Pivotal Response Therapy as briefly touched on in this post combined with Speech Therapy.  We've got ten new signs we are working on with Lewis.  Swing, Pancakes, iPad, School, Dance, Book, Drink, Marker, Up and we are trying to fine-tune LJ's signs for Didi and Bop (the traditional signs for grandma and grandpa).  The behavioral speech therapist (that's Ms. M, a board certified behavioral analyst and speech pathologist) has been largely focusing on Natural Environment Teaching with a focus on teaching "Manding" (that's the verbal behavior buzz word for requesting) to the early learner (that's Lewis).

The ABC's of Manding are:
-Antecedent: motivational operation (desire or motivation- Child)
Declares ie reaches, looks at an item, looks at therapist/caregiver
- Behavior: verbal behavior (vocal/sign)
- Consequence: specific to momentary operational/motivational operations
Most Important though= teaching our children that mand gives our children a voice


How are we doing this? We have to take extensive data whereby MANDS are incorporated.and/or contrived into daily activities throughout the day and then the data collected will be graphed and analyzed.  The specific data we are collecting is referred to in the verbal behavior world as "trial by trial".  Stuff like total mands per minute, full physical prompts per minute, gestural prompts, vocal prompts and item prompts per minute. The first data we collected suggested Noodle's total mands per minute was at like 0.46. Boo.  We want him at like 3!  So over the next month(s) we will be charting and graphing all sorts of fun data to formalize a behavioral assessment and plan that is appropriate for LJ. We are committed to practice and have faith that our dedication and our efforts will lead to a positive outcome. 

Little Man, Big Soul

Noodles is turning three tomorrow.  He has taught me so much these past three years.  It has been a privilege watching him grow and learn. His smile, his eyes, his love- they are my relief.  I am 100% positive that this year Lewis will enjoy that birthday cupcake finally!  Most people normally don't give eating a second thought.  They just eat.  Same for walking.  Same for talking.  They just walk and talk.  No big deal.  Not for Lewis.  He has concentrated on every single bite, sound production or step he takes.  Every single one.  His strength, courage, determination and persistence are an inspiration.

Last year, for his birthday, LJ didn't want the cupcake.  What he wanted was everyone to sing the birthday song repeatedly.  He still loves singing.  At mealtimes, if he is watching a show and they sing a song on the show, he will grab my hands and point to me to instruct me to sing along. Or he will point at the show and use monosyllabic sounds to get my attention.  Other times, he uses his signs to communicate he wants more songs.  Then there are times when he takes my hands over his hands so that I can clap his hands together for him.  Whenever I sing (albeit off key) and clap, he lights up. I hope one day that he will chime in when I sing him songs.  As each year passes, the more you are you. The more you know.  This year, we sing for you.

LJ (and Nate), you are my source of constant surprises.  You may be a little man on the growth charts, but you have a huge soul! I love how you giggle when mama assists you in chasing Nate around the living room.  I love how you love bath time!  I love to hold hands with you. You are a beautiful person. Your laughter makes me so happy.  May you accomplish everything that your heart has dreamed.  May your muscles and joints get some relief.  May things not be so difficult for you.  These are my birthday wishes for you.  I fall deeper in love with you everyday.  Happy {birth}day.  I am so grateful that you were born.

Chase Your Dreams

Being Elmo

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

The boys might sit through this movie too!

Please Be Seated...DMO Suit Has Arrived

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

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

Dear Teacher :: One Word

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

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

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

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

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

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

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

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

---

Bring On the Potty Party Time

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

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

Eulogy: Tango's Last Tango

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

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

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

My Littlest Heroes Photo

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

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

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

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

School Success

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

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

Ms Suzie and LJ

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