Florida, Take Me Away

Every winter, I dream about visiting family & friends and of relaxing vacations in warm places.  Well, the swimming pool is in sight.  Here comes the sun.  There will be much wine drinking once at our destination (Nanny and Babu's house is good like that).  There'll be walks on the beach.  Some thinking.  And hopefully a little sleeping will be in my cards.  Playin' with my nephews and niece and a little cooking with my momma too.  I am traveling down with both boys for two weeks to refuel during school's winter break.  Josh has to work so he will come down to meet us for New Year's.  But don't take pity on me.  Don't get me wrong, it will be a lot of work wrangling in two toddlers on the plane. Yet, the ONLY way to travel is with a family member clamoring to help out.  Emily is going to fly down with me, since I have some serious baggage (I'm panicked about Noodles' wheelchair and much more). The kids will be so happy and distracted.  I just might even get to peruse a magazine or read my new book! Thankfully Josh will be on the same return flight so we should be good to go. See you when we get back!

Words of Wisdom

Now That We're Five

Nate requested this stunning cake to which Emily & I obliged from SmittenKitchen 

Now that we're five, we have a lot of birthday candles (Star Wars and Legos, Wii games...and phone apps and much, much more).....which five year old doesn't? I like that my birthday is so close to Nate's. (and now I have a nephew who shares the exact same day! Congrats Dan & Anne :-D)  It's nice to celebrate together.  Another year wiser!  It's hard to believe that he is five.  His big brown eyes melt me.  Sometimes he says things that stop me in my tracks and make me laugh out loud. Like "well, wonders never cease!" Seriously, who says stuff like that? Apparently he's that guy.

It hasn't been easy trying to function as a family, taking care of a child with a lot of medical needs and still having time with Nate.  It is hard for Nate too. I can usually tell when he hasn't been getting enough attention as his behavior starts to go downhill.  Thank goodness we've scheduled time together to do fun stuff. I love my "Nate Dates".  Nate is such a caring brother.  He sees LJ struggling with most tasks, and he will say things like "Let me put his socks on.  No more physical therapy for Noodles.  I will do it for him whenever he needs help."  I have explained to him that he is not responsible for his brother.  That this is the journey we are on, and Noodles needs to try to be a little more independent so that his life may be a little bit easier for himself down the road.

Clearly, Nate adores Lewis.  He is so careful and protective & usually will call out to someone when there's a problem.  Like when LJ sneezes and its all over LJ's face, Nate will yell out "Mommy, snot!!!!  A lot of it. Come quick with a tissue." Yesterday, he was LJ's protector.  LJ had been honing his army crawl and almost pulled down a folding table onto himself. Nate was there to save the day though.  He exclaimed "Uh, a little help here.  No LJ, stop that." My favorite quote is "I love you Noodles.  You are the best baby brother ever!"  And these glimpses at reality are what make me, when I can, let go and embrace each special moment spent with them that much more. I learn from them every time. They will always keep me going. The journey is the destination. I'm trying so hard to be grateful for what I have, and not looking toward the future to fill a void.  And I swear I will not let my fears for tomorrow rob me from the joys of today. 

"FIVE is so different. When I'm TEN, LJ will only be seven."

Nate's Donut Cake_December 9, 2010 from Jenn S on Vimeo.

Who is Norm?

I am so inspired. This campaign about redefining inclusion was started by middle-schoolers!!! Check out the IamNorm.org



I had also watched a similarly-related moving documentary on PBS a while back called Including Samuel .  The boy in the beginning of the I am Norm campaign is the very same Samuel!

Happy Happy Joy Joy

Noodles tried a piece of cold, leftover cheese pizza today!!!  It makes me smile so hard I think the corners will crack! He wasn't skeptical of it, he didn't gag or anything. He signed that he wanted some (yes, he initiated it folks), and when we gave it to him he just started gumming it. Coincidentally, an episode of Barney was on in the background and there were several kids learning to make a pizza with Barney at a pizzeria.  

As for me, I'm still sick but I've been takin' it easy and the meds are starting to do their thing.  I'm low on energy & I have a repeat chest xray next week to see if the pneumonia is still there. And as my wise Uncle Jon suggested, maybe your body just needed you to slow down.  Or maybe you should tell your body to shut up!?*@! Time will tell.

But I digress, back to the man of the hour.  I caught myself saying out load, this is amazing.  This is the first time he's ever had pizza!!  What a "normal" rite of passage for most toddlers - its just part of living.  But I actually cried because the joy is so different.  Everything is so much harder for Lewis that I've felt this shame and inadequacy with respect to eating encounters- you know, we're the elephant in the room kinda thing.  I am so encouraged and excited for more practice at eating as we hustle to get ready for Markus' next visit in the Spring.  Today, I feel a lot less anxious as we slog our way through :)

Pizza Pizza_Lew's New Fave_12.7.2010 from Jenn S on Vimeo.

Finding Inspiration

Egads

Pneumonia.  My fever won't leave me.  My ribs feel like they're cracked.  My lips are indeed cracked.  How am I supposed to stay hydrated when all I want to do is sleep. If I drink water I'll have to get up to go to the bathroom? Saturday night through Monday night I woke up in pools of sweat.  I didn't sign up for this. It just reminds me that I am getting old. On the flip side, I did need to drop a few pounds after the Tgiving revelry; haven't had a sip of anything except soup (Josh is a good hubby- he made me turkey noodle soup from the leftovers), Gatorade, water and lemon-ginger tea.

The first antibiotic didn't work and the Tylenol with Codeine wasn't helping me sleep-I was still coughing up a lung. I'm on a new antibiotic as of this afternoon and got some fancy cough supressant called Tessalon pearls. I've had to cancel so many fun "dates" this week.  Woe is me, I know, I'm just havin' a hard week. I just needed to "unthunk my glunk" as Dr. Seuss would say. I'm on the mend. Alright. I've got to go to bed now.

The Dream

Sometimes a dream lands so hard
it flattens you.

I liked it better before, you moan,
waving my dream like a silk handkerchief,
light and soundless above my head.

It could have been anything,
a kite, a bird, a large balloon
with three passengers.

Instead, it landed in your lap,
you asked for it,

 

secretly you had been reeling it in for months
like a trapped fish.

Too big for the net--
it loves you more than you love it.
It wants to stay here forever, smiling and cuddling in the bosom of your days.

    
              ~ Naomi Shihab Nye, from Words Under The Words

LJ Headshots

LJ meets cream cheese and chip soup. Anyone had chip soup? Nope, not tortilla soup. Chip soup. Hands down, it's brilliant. When the cream cheese got wet, it looked like he had modeled for the Got Milk? ads.  I had to do a double-take because its a sight I've never seen with LJ.  Jeni is so awesome; she makes it look so easy.

Seriously.  Isn't he the cutest though? 

The rocket ship around his Mic-Key button is called a "Tummy Tunnel".  An entrepreneurial mom of a tube-fed kid came up with the idea for a home-based business because there was a need to access the button for bolus feeding. Onesies or footed pajamas just don't cut it. As a general rule, I do not iron. Ever. I bought 6 of the iron-on patches and made an exception. I turned several of LJ's onesies and pajamas into wearable pieces of clothing. Finally some of Nate's hand-me-downs are being used! If you're interested in learning more, visit her website here. But hopefully, we will not be having to live with his g-tube too much longer.

The Latest

Four weeks.  The feeding pump has been stowed away in the depths of some closet somewhere for the last four weeks.  It has been exactly one month since Noodles has been on the blenderized diet.  And life is so much easier.  Here's a sample daily intake (the only change is that we've added some salt, 1 tsp of Cod Liver Oil and reduced the Canola Oil to 2 tsps). The cod liver oil is for Vitamin D:

















Retching episodes are a thing of the past and I have to think its because of the new diet.  Emily has been a tremendous help figuring out what works and what doesn't.  Together, we've found a system that works.  We laminated the Homemade Blended Formula Worksheets, one for each day of the week, and came up with a menu plan for the week.  We use a china marker to adjust the food items from time to time and recalculate the total calories accordingly. It keeps us organized and each night we place all the ingredients for the next day in a container.  We add liquid the next morning and blend it up in the Vitamix. Voila.  The food is made for the day and we draw it up into syringes and plunge it into LJ's belly several times throughout the day. (he got turkey, potatoes, peas and apples for Thanksgiving yesterday O)

As of Wednesday morning, Lew is the proud new owner of yet another hand splint.  His right side, still the weaker side, doesn't ever seem to relax.  LJ always holds his right arm close to his chest and right hand fisting still persists. The old hand splint was too small and had disappeared anyway so our OT at Children's Hospital made him a new splint.  We have been working our way up to wearing it all day.  So far Noodles only tolerates it for about 20 minutes and he has figured out how to un-velcro the straps using his functioning hand! He's quick like that.

LJ prefers to communicate with sign language over his iPad (but we're still working with him on it).  He's producing more sounds when he signs, oftentimes making an "mmm" sound when he signs "more" or "ma". Lately he's also started making the "ba" sound.  The cerebral palsy makes it hard for him to control how his hands and arms move.  And it also makes it difficult for him to close his lips when he wants to create a sound.  Sometimes he uses his fist to help guide his jaw upward in order to produce a sound.  Still, I continue to be awed by him and he probably uses 20-25 baby signs/day.  Here's the rundown:
water ::  eat ::  yes  ::  no  ::  mom  ::  dad  ::  please  ::  thank you  ::  more  ::  all done/finished  ::  diaper change  ::  movie  ::  bath  ::  night night/sleep  ::  car/drive  ::  play  ::  ball  ::  light  ::  phone  ::  love  ::  want  ::  shampoo  ::  stars  ::  book  ::  hurt  ::  stop  ::  home  :: dance  ::  socks  ::  shoes  ::  wash hands  ::  hi  ::  bye

Gobble gobble...

Oh, the togetherness! Wherever you are and whatever you are doing, I hope you have a wonderful holiday.  May your preparations go smoothly and may there be ample smells of cinnamon, cloves, cardamom, baked apples and pumpkin spices-oh yeah, and turkey of course.  We've had a lot of time these last few years to think about the many things we have to be thankful for.  The courage, compassion and connection in our community are just a few of them.  I know how incredibly lucky we are.

~ "May gratitude continue to take over your heart -- crowding out worry, fear, jealousy, envy, hate and the litany of other useless emotions."

Tuesday Night

Among the Giants

So cool- every adaptive thing made in this video is constructed of cardboard.  Warning though, the video is long.  Who knows, Nanny is a Designer specializing in accessible design and Bop is an engineer?  I think we may just come up with a few "Noodle" projects for the grandparents!  Such simple stuff can turn a hard life around. Very inspiring! Speaking of adaptive equipment, we are going to get Noodles fitted today for the Up n Go Gait Trainer you've seen Cathy Fox, our OT, working with.  It's a dynamic, weight-bearing walker which hopefully will improve his posture and alignment, control & endurance.  We're also in the market for a new bath chair.  LJ has outgrown his old baby bathtub (read, his legs hang over the edge) so we will try out a few bath chairs like this.


Among The Giants from Adaptive Design on Vimeo.

Bravery

A Little Slice of Life

LJ's Play Picnic with Markus, Jeni & Josh_Nov 10, 2010 from Jenn S on Vimeo.

We're all a little sad that Markus had to go home.  Come back soon.  We loved having you here. We promise to have meatballs, spinach and Nutella on the ready for you. (Not all together;)

Seeing the Everyday

ANNA QUINDLEN : Life is made of moments, small pieces of silver amidst long stretches of tedium. It would be wonderful if they came to us unsummoned, but particularly in lives as busy as the ones most of us lead now, that won't happen. We have to teach ourselves now to live, really live…to love the journey, not the destination.

 

In Good Company

We've welcomed Markus to our town. Kicked off the weekend with his first-ever 5k race (we walked so slow I am convinced we came in last place), then he gave a lecture at Walter Reed, then another lecture at Arlington Parent Early Intervention (this link will be posted to YoutTube soon in case you're interested).  We've learned a great deal of how tube weaning works and about Markus- he's quite tall, likes to surf, drinks a lot of coffee, won't let us call him doctor, doesn't like mountains, he has a pension for Chuck Taylors and he has a wonderful sense of humor.  LJ and Nate have made fast friends with the whisperer. And it is clear Markus loves kids.

I made a lasagna dinner last night.  Markus commented that LJ will be a challenge on the tube-weaning-front (he's seen kiddos like this)...and that Josh and I should plan a vacation between now and April because we should be prepared for a lot of tears from EVERYONE during the wean. He asked us to promise that we will make a big celebration when this part of the journey is completed and we finally have an eater.  You bet we will have a proper fete to mark the occasion and Markus and LJ's team will certainly be a big part of it!

Today we entertained our friend Max; the lil guys explored a hard-boiled egg, cantaloupe, veggie sticks, banana and cookies.  Then Markus and I capped off the afternoon with a private tour of the Pentagon. Tonight, Josh will take Markus to Georgetown to have some "guy time" over a beer or two!  To sum it up, its been busy, busy, busy. We're on cloud 9.


Good Company_Markus, Emily, Jeni, Tracy, Max, Nate from Jenn S on Vimeo.

Turning Over a New Leaf

Oral feeding progress has been slower than we'd like. But we're turning over a new leaf. Markus (the tube whisperer) is here- from half-way around the world!!!  Rah Rah Rah...Small world story: aside from the Institute in Berlin, he also has a clinic in Darmstadt, Germany.  Darmstadt is where my father (Babu) was stationed in the army and he worked as a surgeon for the base dispensary. Back to the present, we couldn't find any fairy godmother's for hire, so Markus is bringing his magic wand and I have been quite preoccupied anticipating his visit this week. This visit will be focused on Dr. Markus and LJ getting to know one another and on LJ's team learning what we need to know to prepare him for a tube wean in a few months' time.

Markus Wilken is a child psychologist specializing in the diagnosis, treatment and evaluation of feeding disorders and feeding tube weaning.  Markus holds an M.A. in Psychology and a Ph.D in Pscyhology, both from the University of Osnabrueck, Germany.  He is currently the Co-Director of the Institute for Psychology & Psychosomatics of Early Childhood in Germany.  Markus received specialized training in tube weaning and treatment of early onset feeding disorders at the University Hospital for Children in Graz, Austria.  During his career he has performed extensive scientific research and clinical study in the area of early childhood feeding development.  Markus believes in a team approach to treating weaning tube fed children; this passion has led him to train therapy teams and families (we're blessed to be one of these families) around the globe in his unique methods.

This passion is also what drives him to spend hours on skype with our OT Jeni, or on the phone with me talking about LJ's feeding issues...even when it is 9pm his time, he's worked a full day, and has a family of his own. Markus is truly an inspiration.  We are beyond excited, grateful and ready to learn as much as we can all week long. He gives us much hope and valuable insight that we will one day soon have an oral eater & be able to wean LJ from his feeding tube!

The video is totally unrelated.  But I like it.

Perfect Protest

I just ordered this book:

• Bye-bye perfect, hello_______.
• I am too _______ to be perfect.

embracing imperfection & going with the flow celebrate your everyday life + make sure you are capturing stories that are meaningful to you today connect with other people who care deeply about collecting + celebrating the stories of their lives

Possible :: Impossible :: Miracles