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.