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.