Happy Anniversary, Josh!

us on the big day

It's hard to believe that 10 years ago today, we got hitched.  Yikes.  We've actually been together 17 years.  It's been an adventurous journey to say the least.  For our anniversary, we opted for a staycation until we could plan something more appropriate for the milestone.  We lounged around at the W Hotel in downtown DC before getting a massage at Bliss Spa (me...not Josh;), then capped off a perfect day dining on yummy food at minibar.  Despite both kids' scheming and coming down with fevers and flus we managed to get there, and this six seat restaurant did not disappoint.  An Oaxacan snowball for an appetizer?  Sea bean tempura anyone?  My most favorite of the 29 courses??? was perhaps the Charcoal Grilled Salmon Toro with Black Garlic but really how can anyone choose.  They were all out of this world!

The night by far exceeded both our expectations. Didi and Bop, thank you so much for hanging with the kids and having a sleep over at our house.  The peace and quiet in the hotel was the perfect dose of calm!  We are so lucky.  Josh, I love you to the moon and back.  It's been incredible and I know that our adventures are exactly where we're meant to be.  The love of it all will in the end be the thing that sets us forth.

We Survived the Dental Work

Earlier today, we arrived at Children's Hospital in DC for LJ's dental work.  Dental, of the teeth variety...not trim.  General anesthesia worked like a charm:  X-rays, 7 cavities and 1 sealant (all the other back teeth weren't healthy enough for sealants) later, we are all home and recuperating.  Luckily, the dentist didn't have to extract his eye tooth or even do a root canal to it.  They did use a white filling, however, so it won't show. That's not so say he's in the clear...in the future he may need the root canal before his adult teeth come in.  They also warned us that now that LJ is eating we have to watch out for cavities in between his teeth now that his teeth are all touching.  But hurray no more teeth pain! Lewis has even flashed me his toothy little grin a few times today so I can vouch for him!  Next up, surgery this coming Tuesday to close his stomach properly since it's leaking still.  And in case you are wondering, no the surgeons couldn't operate at the same time....different hospitals, surgeon's privileges, cross contamination or some such!  Oh, the fun never stops ;-)

Look What I Can Do

Babu took this sweet video at the playground this past weekend.  Lewis is now able to rock himself, and independently go down the slide.  His laugh and signing for "more" at the end just melts my heart!

Behold the Power of a Motorized Chair

Hi all.  LJ's dental surgery is now on April 18th.  He has to see the GI surgeon this Wednesday because his tummy looks a little angry at us, and because it's still leaking.  In the midst of all the family visits and surgery scheduling, we also finally got LJ's Power Chair yesterday!!! While its a long time before LJ will be cruising in it on his own, he is one proud 3-year-old dude.

He will get the hang of the joystick in no time- a 2 1/2 year has mastered the art of driving one of these bad boys so LJ will definitely be able to within time.  He gets a little bit of an evil Knievel streak in him - one of the first times he was in the power chair he was pushing the joy stick backwards and it kept going backward and sort of jossled LJ around in it once backed up to the wall as far as he could go.  LJ giggled, seemingly enjoying his joy ride, and continued enthusiastically pushing the joy stick backward ignoring our encouragement to press it forward.  We're supposed to be getting a remote control "kill switch" which will undoubtedly come in handy. Oh that, and also having the power set on the lowest possible setting (it can go pretty fast!).

But for now, our walls are serving as bumpers:) I cannot wait to see him be able to drive himself up to the front doors at school one day in the near future.

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.

Be Kind

"when given the choice between being right or being kind, choose kind."

- Dr. Wayne W. Dyer

Reunion with Old Tube-Weaning Friends

Happiness is a big ole hug from two, old friends who came to visit us this past week.  There's nothing like them!  Markus and Jeni of Spectrum Pediatrics (see this post), our wise feeding specialists, came over for dinner this past week...one night after they worked all day with another brave, tubie kid (little W) who is on the same intensive-tube-wean journey we were on this very same time last year.  I look back now and think about how difficult and challenging a time that was for us.  How much fear we had. LJ cultivated such a special relationship with Markus and Jeni; it is really so wonderful to observe.

Here is a photo capturing the first reunion.  LJ was giddy with excitement for them to arrive.  As soon as they were through the front door he practically leaped out of my arms into his old, friends' arms.  It was thrilling to witness! The total recognition of Markus and Jeni combined with the complete recall of the events surrounding his tube wean gave me utter conviction that we didn't harm him or his relationship with food one iota.  In fact, we did a 180 degree opposite.  LJ loves these two magic-makers and LJ as you may well know, has a love-affair with food.  Hard work pays off.

That night, we told stories, we listened to stories but mostly we just marveled at the road we've been on.  Its hard to see when the reality is what we wake up to each and every day.  But when your dear friends haven't seen LJ for a year, it somehow has more merit when they tell you what amazing progress they see.  I don't know why our individual points of view are so widely different from moment to moment; we are witnessing the same human being.  I suppose us parents need to take the time to see how the day unfolded and see what worked and didn't work.  I suppose its because as parents, we watch differently. Morning. Noon. Night. Feelings and thoughts arise and subside and there's always worry.  I suppose as parents we need to be quicker at seeing where we've been and putting forth our efforts on that next path without so many questions and doubt.

As Markus and Jeni continue their work, I pray for little W that he maintains his endurance and focus to stay on this road to becoming an eager eater.  Sending W's family the patience, strength and discovery of hope. With gratitude and awe for two old friends who took such beautiful care of our boy. With admiration toward little W's family.  There's something special about our old friends.

And with that, we raise a toast to LJ's tube removal in two weeks.  We have cause for celebration!

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.

Snapshots of Nemacolin Trip

I took the kids to Nemacolin last week for a few days sans Josh.  We got to see my dear friend, Alicia, and her wee ones.  It was an amazingly good time for everyone.  "When it comes down to it, the best moments in life are those spent with good friends over good food."  As our lives have gotten more complicated, it is harder to find the time to go play.  I'm so thankful for the good fortune of time and the friendship to hang out and have some quality time together.  The woods, the grounds, the suite (we were very fortunate to get a nice, little upgrade :), the spa, the restaurants, the late nights whispering to one another while the babes slept in oversize hotel beds...this reminds me of life's best things.

Now, if we could only go back next weekend and shirk all our Earthly responsibilities! I could hardly wait....I miss you already!

What's Going On?

I've been trying to find a way to get an update posted.  So what's been happening? Everything is really status quo.  We continue with LJ's chaotic schedule of rigorous therapies even contemplating how we will schedule another round of HBOT.  He was pretending to go to sleep last week at speech therapy, and he strung three words together using his signs.  He told Ms. D "go, turn light off" and he vocalized "off" simultaneously.  Very exciting stuff.  LJ has also been more consistent with regard to moving from his tummy to a seated position and maintaining a sitting position for longer stretches when he has a preferred toy in front of him. I start teaching my very first yoga class on Monday.  I started an LLC so that I can also teach private sessions or corporate sessions.  We're applying for a service dog through 4 Paws for Ability for LJ.  More on that in another post (but the net of it is that it will take a while, about 11 months to train us with the dog).

The boys spent the morning of their President's holiday at the dentist.  Nate got a good report.   LJ however needs to lay off the applesauce.  He's got two cavities that need fillings, boo.  I'd much rather have him eating independently from the gtube so I really have no regrets.  Bop had hip surgery- he is recovering beautifully and is disciplined with his PT.  Thank you for all your well wishes.  Babu is on the docket next week for back surgery so keep up the happy thoughts.  Josh has been keeping the bread chronicles alive with several loaves of challah this week.  {Note to file, making challah with whole wheat flour doesn't turn out quite right.}  So yummy to wake up and have freshly baked bread with butter and jelly. And the weather is stunning today - sunny and sixty degrees in February.  Counting down for the tube removal on March 29th!!!  What can I say?  Hope you are all well.

I Heart

Happy Valentine's Day everyone!

On Top of Our Game

Dad and Daughter

Nate Making Piza Wedges and French Fries

Uncle J and Cousin L

Nate

Cousins Snowball Fight!

Babu and Uncle J~ Martini Time

Playing Hooky This Week

All in all, a good week was had by all.  We paid a visit to the physiatrist earlier this week.  She checked LJ's DMO suit, foot orthotics, splints and overall functionality of the muscle tone.  We're proud to report that we are not needing to do botox for the muscle tightness right now.  She feels the DMO suit is working & wants to see how things progress naturally!  Lewis is able to sit in a propped position for quite a little while before falling backward.  The thought is that once his Gtube is permanently removed in the Spring he will gain even more core strength.  No botox = really good news.

The other great news is that a new, local Hyperbaric Oxygen Therapy clinic has started seeing young patients with CP and also autism. I toured the facility on Friday and was impressed with what I saw.  The last time we did HBOT treatments we really saw an overall improvement in LJ.  Sadly they were a mobile unit and moved to Wisconsin for awhile.  That was in February 2010.  So since we are a no-go for the botox, I think we are going to try to find a way to do 20 sessions at this new HBOT place. 

And the last bit of fun news is that Nate and I are off to join my dad, brother and nephew in Park City for a little skiing and tail end of the Sundance film festival.  Nate is so thrilled to see snow.  (They got a foot of snow last week.) Whereas we had a couple inches here in NOVA which promptly melted overnight and turned our front yard into an icy mess.  That didn't matter; Nate still wanted to wear his snow boots and play outside...making crunching noise on the ground and picking up ice blocks and launching them at stationary objects.  Magic carpet ride here we come!!!  {Checking out the adaptive ski program for LJ for the next time we're there too}.

Netflix Taste Buds

Lately LJ has been requesting cooking shows in place of the ole stand-byes, Yo Gabba Gabba and Sesame Street.  He created his own sign to indicate a cooking show instead of movie. LJ requests it by using his good, left hand to pretend he's holding a wooden spoon & he moves his hand in a stirring motion.

Here's a brief run-down of his latest viewing activity:
Cake Boss
Man v Food
Best Food Ever
Oliver's Twist (Jamie Oliver)
BBQ Pitmasters
Take Home Chef (Curtis Stone)

We get to watch these foodie shows, then he insists we go in the kitchen to make something. Here's a picture of his pretend mixer and microwave he got thanks to his grandparents for the holidays.  We break these out especially when the kitchen's closed.

Look out world, here comes the next Iron Chef!

Happy {Chilly} Trails

We had a lovely time at hippotherapy in the 28 degree whether this past week.  Siblings and all.  Don't know if I mentioned that Lee Roy (the loving, old horse LJ used to ride) moved out of state with his owners so we've been riding a new horse named "Bo".



Bo is pretty quirky.  Although perhaps the experience was due to the chilly temps and the fact we had LJ wear his ski hat underneath a larger size riding helmet which sort of came down over his eyes a few times. And maybe also because thirty minutes of freezing your bottom off in a horse barn riding horses probably doesn't loosen up the muscles so well, LJ kept asking to "be all done". That and his hands were so frozen he could barely hold on to the balance bar on Bo's saddle.  His hands were like popsicles when we got back to the car.  His face did brighten up at the end though, when we got to feed "Bo" a special "cookie" that Kristen boasted was supposed to taste just like an apple.  Next time I will remedy the situation and have some mittens with extra grip on the palms for him to wear.  And a real apple.  But all in all, he did an awesome job this week!

Scenes From New Years + A Video from Aqua Therapy

Red Velvet Cake recipe from the Magnolia Bakery

Thought I'd share a few moments from the NYE celebration. The red velvet cake had sparklers on top which the kids got to light outdoors. Then the "big kids" played a rockin' game of Apples to Apples. The boys stayed up until midnight to watch the ball drop and ring in the new year. Thanks so much guys! Had a blast!! Now we're regrouping a bit as we get back into a quasi-post winter-break-routine. Here is a random video of LJ at aqua therapy today (he's standing on an underwater platform. M is trying to get LJ to hold up his own weight using the "shark" hula hoop).

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!