Year's End

I'm trying to think more about the lessons I've learned in 2011 before we close out the year and begin anew.  So often I rush from one doctor appointment to one therapy session or another thinking that the old saying "keep busy" will be enough of a distraction to avoid the reality.   I've only really stopped a few times to let it sink in.  What has this year's experiences meant? It's still evolving.

Upon reflection, it's meant strength and perseverance.  I've been afforded new opportunities to become inspired by some awesome, amazing people. And knowing that LJ's smiles and bright eyes illuminate everyone's day.  And the boys' laughter- especially Nate's belly laughs- could carry me through a hundred more years.  And the gains and strides all around.  My how we've grown.  It has actually been such a great year!  We have taken in the sights, sounds and smells of victory.  We have made a lot of progress this year.

We're ringing in the new year with friends and their families, yummy food and games! We are refueling in order to start strong in 2012.  See you around the corner + may you have a happy, healthy new year!

 

Year's end is neither an end nor a beginning but a going on, with all the wisdom that experience can instill in us.

~Hal Borland

Live In Joy

We Finally Did It!

Happy weekend it was indeed. The ole adage, "no news is good news" is right on.  LJ's EEG report was great.  "The EEG was normal but there was a substantial amount of motion artifact."  In English, all that means is that he was moving around a lot during the test so the results are not 100% positive.  However, on the quieter portions of the recording there were no abnormalities.  After waiting an entire week which seemed like cruel torture, this was the best, possible news to start our weekend.  Thank you to everyone for your support and encouraging words. Next step is to figure out what he really was allergic to that caused his reaction.  (Its a mystery because he didn't eat anything out of the ordinary).  But that's a lot of blood tests and I'm not sure either of us are ready to jump right into that quite yet.

And to cap off the weekend of good things,  I took my final for my teacher training on Saturday and there was a graduation ceremony yesterday for my fellow yoginis.  I am officially an RYT-  Registered Yoga Teacher!  It's bittersweet.  Emotionally, I feel excited and sad all at once.  This confusion stems from the fact that I don't want to let go of the moments and experiences I had during teacher training.  I feel so much more connected to myself. I became friends with 7 truly insightful, wonderful teachers. 

Transitions are always hard yet I look forward to the beginning of a new stage in my life.  I am truly grateful to all the great teachers I've studied with.  I will always remember this time in my life fondly.  Hhhmmm, now I'm off to figure out who I am as a teacher and where I see myself headed.  Good stuff.

Sidewalk Cracks

I am thinking about sidewalk cracks. If you live in a place where there are sidewalks you will walk across the cracks many times. And perhaps, once in awhile when you are not thinking about where you are going, or what he or she said, or how you wish things were different, you will notice that they are rarely empty.

The cracks, the broken parts of the well-laid path are in fact opportune gardens in which wildflowers take root.

: :   L a u r a   H eg f i e l d   : :

....still waiting to hear about LJ's EEG test results.  I've called twice, and emailed once.  They told me they allow 7 business days to read the test! The opthalmologist said his eyes look healthy.

72 Months of Nate

Six years ago today I became a mom. I will forever remember that day when we watched rad Warren Miller ski flicks during the down times of labor. Where life was perfectly happy and magical even under the guise of a good dose of pure, unequivocal, physical exhaustion.  That snowy, cold December day when the lovely Redskins were playing right during his birth.  {Someone (not to name any names) was a lil distracted.} When color and light danced around inside even when things turned grey outside. I still remember that first quiet moment after the scary and anxiety-filled decision was made for an urgent caesarian. He showed signs of distress and we were ushered quickly into the OR. Gratefully, I get to tell the stories of celebration, fall deeper in love with him and learn each and every day.  The recovery was far more intense than the labor.

I remember having to walk up our two story-walk-up backward in order to get to the restroom!  Somehow it was more comfortable to walk up the stairs backward then it was forward.  On second thought, I might like to experiment with that tactic when faced with future challenging times.  Looking back, it was absolutely a fitting way to prepare me for what was yet to come.  We must remember, we can't take anything for granted.  We are all too lucky to have this little legomaniac, candy-hoarding, Harry Potter-loving, back-up-dancer-extraordinaire, hot-dog-eating-machine little being in our lives who says endearing things like:

: :  Mommy, do you wanna get under the covers with me?  No honey, I'm ok.  Well, Mom, the fan is pretty good at making people cold...
: :  Get your feet under the covers and stay for awhile..
: :  Somebody poisoned the water hole!
: :  Hey Mom! I got a Christmas sock on Webkinz
: :  Wookies are good guys! Furrowed brow.  They're NOT Naughty.
: :  Oh, I love ducklings.  But how do they make them into those yummy little dumplings?


This little wee one who holds the Earth in his hands and walks around the candle six times.  He represents the Earth revolving around the Sun and the months of the years.  Just thought I'd share.  Love this lil man.  I am forever his.

Hijack Post!

Hello.  This is Nate and LJ's Dad (Jenn's husband).  I haven't posted here in some time, but I wanted to pass on some happy notes from a Saturday evening.  Jenn doesn't know I'm here.  (Sorry honey ;)

1)  LJ seems to be fine, at least for the moment.  We don't know what happened the other day, but he's back to being himself.  He had an EEG yesterday.  We don't have any results from that test yet, but his behavior over the last few days does not give reason for concern

2)  Jenn taught her first yoga class today.  She kicked A$$.  I'd like to use stronger words, but this is a family blog.  I was there.  She done good.  It was a full house and she had lots of supportive friends in the room.  I was proud (and sweaty and somewhat awkward trying to do yoga)

3) Jenn just caught me trying to post this.  She has now gone off to change LJ's dirty diaper (a mother's work is never done) and has made me promise that I will let her read it prior to posting.  She is probably upset that I said nice things about her yoga class.  We're proud of her, us boys.

Pain in the Brain

On Tuesday morning, I received a call from LJ's wonderful teacher, Ms. Julia.  She was concerned about him.  My heart pounded. She is the most capable person you'd ever want to leave your child with so when she says something's not right it was/is alarming. Cue the worry.

LJ pointed persistently at his head to tell them his head hurt.  He started voluntarily using his right hand for every task that was set forth refusing to use his preferred, more functional hand.  And then during snack, LJ turned bright red.  The teachers and therapists that were there, took him out of his chair and put him on the floor in a quieter area of the room.  He was listless and confused.  He could barely open his eyes and when they were squinting they could see the whites of his eyes were bright red and the pupils were very large. When I arrived at the school he was still really lethargic and disoriented.  But for the most part he had recovered.

We visited the pediatrician and afterward went home (armed with referrals) where LJ napped for several hours.  He really wasn't acting like himself the whole day.

There is a chance this episode was a seizure.  Its also possible he had an allergic reaction to something.  So we have an EEG scheduled for tomorrow afternoon at the neurologist's office to see whether this was a fluke or whether there is additional seizure activity.  We have an appointment on Monday with the pediatric opthalmologist since it was evident that LJ was feeling pressure behind his eyes.

All day yesterday, I had my phone attached to my hand...fearful of the chance that it could happen again.  (That and then speaking to the dr and then insurance and then the scheduler).  I am on it! Seizures aren't new to the scene; LJ had them right after birth.  He used to take Phenobarb when we first were discharged from our initial hospital stay.  But the seizures seemed to have stopped.  All this to say, there's never a dull moment around here.  Ugh!

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.

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.