The Art & Science of Building Resilience

To navigate the complex world of special-needs (or super-powers) parenting, we need to be resilient- to learn, adapt and grow even stronger given whatever life's circumstances come our way.  An integral part of strengthening resilience is sharing our story, our feedback, our imperfections in a connected, grounded way.

We have a choice.  We get to choose. We can cultivate calm, non-reactive presence and sit with whatever is. This practice is like mountain with no top; ever-expanding. There is no top.  I am constantly learning by trial and error.

Sit with it.  Sit with the idea that Lewis has been eating (by mouth) for the last 3.5 years. Is it still disorganized? Hell to the yes!  But his whole life revolves around food now.  He is completely desensitized from the trauma of the intrusive medical intervention he received in the hospital after he was born lifeless. Considering he has only truly been eating and drinking for the last 3.5 years he is making continual progress. He loves food!

Fast forward to the last two months at school.  As much as we love school, it's a lot of new people in our lives who sometimes don't really understand us. Even though we have a team who supports LJ, it somehow can feel lonely.  Quite possibly my fear, anxiety and defensiveness enter into the mix.  But here's the thing, his team is nervous about feeding him.  After the long road we've been on to develop Lew's eating skills, I do not want to entertain the notion of a setback.  So I am aware that my reaction is completely founded.

My impression is that the school SLP (speech therapist) and lead teacher don't really want to feed him/feel comfortable feeding him.  They've been pressing us to have a dysphagia team observe Lewbug eating at lunch time so that they can offer an action plan.  Josh and I finally consented under the impression it would not limit LJ's food intake but rather give constructive feedback about increasing his efficiency and helping those people that are feeding him. Since there isn't really a lot one can recommend, their knee-jerk-go-to solution is to suggest another swallow study.

Here's my strong conviction on the swallow study.  It's not gonna change what we are currently doing.  It might confirm what we already know...that there is a delay with Lewis' swallow.  But if you don't rush him, give him plenty of time to swallow, and make sure he's cleared his throat before receiving his next bite, he's eating.  He's not going to stop eating.  When he drinks water from his camel bak with bite valve, he has a compensatory body positioning.  He's weak on his right side (he has right-side-hemi-paresis).  The result: Lewis has figured out he needs to gain momentum to swing the bottle upward slightly using only his left hand, and tilt his head slightly back to get the water to flow.  The school team is concerned that all of the above makes him high risk for aspiration.

On January 5th, the schools dysphagia team came and observed a very chaotic "lunch party" with a bunch of LJ's classmates.  They were observing LJ.  There hadn't been any consult with Josh and I prior to the "lunch party".  Questions about LJ's physical abilities weren't addressed until their very first meeting with LJ.  Information about our past attempts at the month-long boot camp in NJ at St Joseph's hadn't been explained.  Nor had the team been apprised of our tube weaning with Dr. Markus Wilken. And of course our on-going efforts at private speech/feeding therapy at home also weren't previously brought up.  It was very frustrating for me to sit and watch them analyze my courageous, beautiful, vulnerable, happy, complicated, unconventional eating boy.  Twenty minutes in, the SLP from the DT asked if we had "ever considered doing another swallow study because he's really got an open airway and that's cause for concern".

My gut reaction was this: "No.  He's already passed the swallow study in 2010.  He doesn't aspirate.  We're not concerned.  His doctors are not concerned.  He hasn't choked, or gotten any respiratory infections.  He's never had pneumonia except once in the NICU.  He's not even followed by a pulmonologist anymore."

Sure, somedays I feel like all I want to do is hide under a rock for a few days.  When I feel depleted of energy for this battle- recognizing this.  Having this awareness that I feel spent, overwhelmed and sometimes furious informs my decision that I need to take all-too precious time to myself to nurture and recharge. And then I regroup my thoughts.  It comes to this- anxiety and frustration is happening but ordeal is a choice.  The choice is how I get to hold the experience.  My choice right now is to thank them for watching my little boy, making their recommendations on their little report and moving along.  Nothing's changed.  There's no new medical crisis or diagnosis over his eating. He's adapted to life's circumstances. The only thing that's different is a school with new people involved with feeding LJ at lunch time. We'll get through this.  It just takes time.  The choice is mine.

Bread Chronicles: Part Deux

So those of you that aren't new to the blog will know that LJ is quite the foodie.  Since Josh's birthday (the kids gave him some Pullman Loaf pans- fancy schmancy pans that cost up to $50! Here's a video from America's Test Kitchen if you're not familiar with the pullman-loaf-pans).  As a result, we'

ve been up to some bread baking here on the home front at LewBug's request.  Here are our most recent creations:

LJ and Josh's Sandwich Loaf from Last Week

LJ and Molly Baked Challah for our Friday Night dinner this week. It was the best!

If LJ Had a Pinterest Account, It Would All Be Food Shots

And these are a few of his current faves:

PS America's Test Kitchen and Barefoot Contessa get lots of airtime at home!

Happy Thanksgivukkah

Hanukkah and Thanksgiving Collide

Now this is a Menurky (turkey menorah)!  It's been one of those weeks for me where you run around and wake up in the middle of the night with thoughts of things to do and things to buy. We're having two Thanksgiving dinners.  We're having one today with Didi and Bop and a larger one with Josh's bestie Brett and his family on Friday. I hope everyone has great company and a very filling Thanksgiving.  May your turkey be moist, your mashed potatoes lumpy, and your belts loose!

No Longer a Kid

It's Josh's birthday! I've been working on this Coconut Layer Cake (see above) inspired by a visit to the Peninsula Grill in Charleston, SC several years ago that he loved. To the tune of a Widespread Panic song here, "I like coconuts/ You can break them open / They smell like ladies lying in the sun." Even more,  LJ enjoyed the entire baking process- from the batter testing complete with digging his entire index finger into the assembled, cooked cake as I was attempting to frost it! And not once or twice, but three times with an evil, mischievous laugh. Its only fair, man. The thing weighs just about as much as LJ does!! Everyone is welcome to come over and help us eat! We have plenty.

I've also been reminiscing throughout the day. He's the best dad! I just love this video (all the way at bottom) from the vaults. It was taken when LJ was still depending on feeding from the stomach tube and he had a lot of discomfort and difficulty sleeping.  Josh is the joy in my life.  Happy birthday!!

Coconut Cake recipe as described on www.marthastewart.com 
This delicious coconut cake recipe is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina.
YIELD:makes two 10-inch round cakes
 INGREDIENTS Nonstick cooking spray with flour
1 pound unsalted butter, preferably European-style
3 cups sugar
6 large eggs
4 1/2 cups all-purpose flour
1 1/2 tablespoons baking powder
1/2 teaspoon salt
1 1/2 cups heavy cream
1 1/2 tablespoons pure vanilla extract
1 teaspoon coconut extract

DIRECTIONS
STEP 1 Preheat oven to 325 degrees. Spray two 10-inch round cake pans with cooking spray; set aside.
STEP 2 In the bowl of an electric mixer fitted with the paddle attachment, cream together butter and sugar until light and fluffy, 5 to 6 minutes. Add eggs, one at a time, and beat until creamy, occasionally scraping down sides of the bowl using a spatula.
STEP 3 In a large bowl, sift together flour, baking powder, and salt. In a small bowl, mix together cream, vanilla, and coconut extract. With mixer on low speed, add flour mixture, alternating with cream mixture, beginning and ending with flour; beat until just combined.
STEP 4 Pour batter into prepared cake pans and bake until a toothpick inserted into the cake comes out clean, 40 to 45 minutes. Let cool completely on a wire rack before removing cakes from pans.

Robert Carter's Simple Syrup 
This simple syrup recipe is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina.
SOURCE The Martha Stewart Show, May Spring 2007
How To Cook Techniques from Martha Stewart

YIELD Makes enough for one cake

INGREDIENTS
3/4 cup water
3/4 cup sugar

DIRECTIONS
STEP 1 Place water and sugar in a medium saucepan over medium-high heat. Bring to a boil, stirring occasionally, until sugar has dissolved. Remove from heat and let cool.

Coconut Filling 
This delicious coconut cake filling is courtesy of Robert Carter from the Peninsula Grill, in Charleston, South Carolina. YIELD: Makes enough for 1 cake INGREDIENTS 5 cups heavy cream 3 cups sugar 1 pound (4 sticks) unsalted butter 1/4 cup cornstarch 1 teaspoon pure vanilla extract 9 cups shredded sweetened coconut DIRECTIONS STEP 1 Place cream, sugar, and butter in a medium saucepan and bring to a boil over medium-high heat, stirring occasionally until sugar is dissolved STEP 2 Meanwhile, in a small bowl, mix together cornstarch, vanilla, and 1 tablespoon water. Add to cream mixture, bring to a boil, and simmer until thickened, about 1 minute. STEP 3 Place coconut in the bowl of a food processor. Pulse until coconut is finely chopped. Remove cream mixture from heat and stir in coconut until well combined. Transfer to a large baking dish; let cool. STEP 4 Cover filling with plastic wrap and chill overnight. Just before using, place mixture in the bowl of an electric mixer fitted with the paddle attachment. Beat until smooth and creamy, 4 to 5 minutes

Coconut Cake Frosting
INGREDIENTS
1 cup (2 sticks) unsalted butter, room temperature
8 ounces cream cheese
1 teaspoon pure vanilla extract
5 cups confectioners' sugar
1 vanilla bean, scraped

 DIRECTIONS
 STEP 1 Place butter and cream cheese in the bowl of an electric mixer fitted with the paddle attachment; beat until creamy. STEP 2 With mixer on low speed, slowly add vanilla extract, seeds from vanilla bean, and confectioners' sugar. Continue beating until smooth and creamy, about 3 minutes

To assemble, cut cakes into thirds.  Place 2 cups of coconut custard between each layer.  Frost the cake.  Option to decorate the sides of cake with toasted, sweetened coconut.

Daddy Sings a Lullabye to LJ_January 21, 2010 from Jenn S on Vimeo.

Life's A Beach, Next Stop: Isle of Palms

I am so looking forward to doing some traveling in the coming weeks. We've got our annual beach week reunion with all my extended family. I cannot wait for the family love, slower pace, good times and big home-cooked meals. I hope it will get to linger a lil bit longer even after the fun vacay is over. And then a little later on we get to visit our dear friends in Ithaca at the lake. Fun times, great friends and family and lots of laughter.

A Quick Hello From Vermont

Bedtime Relaxation

Proud big bro, future Olympian LJ and awesome new friend Mark

Chillaxin' in the jacuzzi tub après ski;)

LJ is not one to sit on the sidelines. So seeking adventure we went skiing this week, and LJ was not one to sit it out. He learned to tolerate the cold and the chairlifts for the greater good of tearin' it up on the slopes.  We thought it was really important he be a part of our family's favorite activity. Sugarbush, Vermont is home to a fantastic adaptive ski program! It has been a wonderful experience and he's doing better every day.

Hot Brown

from Spoon Fork Bacon

In the spirit of Thanksgiving...here's a recipe I pinned earlier in the month in anticipation for all that leftover turkey goodness;)  

LJ and Nate's grandparents, Nanny and Babu are coming for the holiday.  (other grandparents, Didi and Bop are also coming:)   We're all very excited.  Feeling grateful for having these special moments with my family.  Feeling thankful for all the hours my mom stood in the kitchen lovingly preparing our family's favorite dishes and holiday traditions.  Wish I could go back and hug my mom's younger self now that I have my own wee ones.  And since it's Thanksgiving, I'm grateful for all of you friends who have showered us with support over the years.  Who have sent encouraging words or ideas for new therapies or procedures or that just-right pick me up when I needed it.  Those of you who have followed the blog so that my stories can be shared. I'm thankful that all we're dealing with, health-wise this holiday, is Lew's ear infection (ear tubes fell out. boo!) and a potential urological procedure. I'm also thankful for not having to cook dinner tonight;) We're meeting friends and their family at a local Chinese restaurant for a traditional non-Thanksgiving pre-feast celebration:)

So far, I've made the mashed sweet potatoes using the last from our CSA farm share, a Butternut Squash Cheddar Bread Pudding (also the last from the farm share), a Pear Pie, and lastly a Dark Chocolate and Pumpkin Cheesecake ala Marcel Desaulniers for our Thanksgiving day feast. Seriously, the latter might change your life.  Josh has made the cornbread-sausage stuffing and is on deck for roasting the turkey and making the gravy.  Oh, and Herb and Cheese Popovers.  We're enjoying cooking.  And thinking about cooking.  Come on over those of you who need a place to celebrate!

Flaky-Pear-Pie Recipe from Food and Wine

Dark Chocolate and Pumpkin Cheesecake 

Planning a post-holiday walk-off with my cousins' Nazlee and James, their kiddos, and my Aunt J and Uncle H!  We're having lots of family togetherness over here.  Lots of good food.  Lots of good times. Lots of good conversations.

Thankful for so much this year.  Lots of little things that add up to a big difference.  Just last weekend, LJ's new gait trainer arrived and he spent two hours walking in it. He slept well that night;)  One of the other things I am so happy about is Lewis' increased communication.  Just this week he has started a new gesture/adapted sign. "I don't know".  Ask him if he knows what's for dinner tonight, and he'll sign I don't know.  The sign for "know" touches the side of his forehead with the tips of his fingers and shakes out the flat hand and away from his face and then palms face up toward the sky.  I don't know. Ask him what's for dinner tomorrow and he'll sign "turkey", the letter "g" sign touches underneath his neck for gobble, gobble, you-know-what.

This day, Thanksgiving, brings up so much for me. Especially my fears for LJ's well-being...that he not suffer, that he not face too many challenges, that he be accepted, that he not be alone.  Wishing that I had some control over the road that lay ahead.  And also, having spent so much time in hospitals and doctors' offices, knowing that there are so many kids that have to overcome so much adversity.  Give your loved ones a tight, tight hug.  Be thankful for their health.  For now, I am just trying my own advice to just breathe deeply.  Just stay in this moment right now.

May you all have a wonderful holiday.  May you savor more everyday moments.  May you all find, peace, happiness and acceptance.  May you dance like no one is watching! (Had to throw that last one in there, honoring my little Nate!  He's been coming up with some fabulous dance routines...one of which was only just recently discovered...recorded... on LJ's iPad...the new iPad...the one with a built-in camera...that Nate figured out how to take videos of himself with his song of choice playing on the older, work iPad in the background.  HILARIOUS. )

Hot Brown Sandwich
Makes 4

Ingredients:
mornay sauce:
2 tablespoons butter, unsalted
2 tablespoons all purpose flour
1 cup whole milk
1/2 cup medium cheddar cheese, shredded
1/2 cup sharp cheddar cheese, shredded
1/4 cup fontina cheese, shredded
1 teaspoon garlic powder
1/2 teaspoon dry mustard
salt and pepper to taste

4 slices sourdough bread, lightly toasted
1 lb roasted turkey breast, thinly sliced
6 rashers bacon, cooked and crumbled
black pepper to taste

1. Preheat broiler on high.
2. For mornay sauce: Place butter into a small sauce pan and melt over medium heat. Sprinkle flour over butter and whisk together. Continue to whisk for 2 to 3 minutes, to cook out the raw flour taste. While whisking add the milk until fully incorporated, ensuring no lumps have formed. Using a wooden spoon stir in the cheese until well blended followed be the remaining ingredients. Season with salt and pepper and cook for 1 minute. Remove from heat and set aside until ready to use.
3. Place sourdough slices onto a baking sheet and top each with 4 ounces of turkey.
4. Top each sandwich with a generous ladle of mornay sauce and top with a sprinkle of bacon (you can serve now if you wish). Place the baking sheet in the oven and broil each sandwich for 1-2 minutes. Top with freshly cracked black pepper and serve.

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.

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!

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).

Fair

Once upon a time, Emily and I took both boys to the fair.  We met with my brother and sister-in-law and their adorable baby, Parker.  We saw the baby piglets and baby cows in the 4-H building, we made turkey callers out of dixie cups and cocktail straws...but alas did not get the turkeys' attention and Nate had a mutant ninja turtle painted on his cheek.  Nate made a chia-head out of stockings and wheat grass seeds.  LJ had his hand painted with his on-again-off-again favorite, Elmo.  Parker promptly fell asleep in his stroller.

And then there were the rides.  Emily took Nate on a super fun ride.  She also took LJ on the aptly-named ride, Wiggle Wurm.  Emily is a such a wonderful caregiver.  She takes such good care of our family.  We have been blessed with her selfless acts of service, listening ear and she seems to always look outside her own needs to help out with the boys.  Case in point, promptly after the above ride with Nate, it was Emily who looked green and a little woozie; not Nate as we had expected.
 
And then there was the food.  Emily tried a giant turkey leg.  It could have fed a couple Vikings.  She walked around with it, brought the leftovers on the car ride and it still isn't finished as of today.  Nate cooled off with an Italian ice- sweetened with a most unnatural, artificially colored sugar water.  LJ got to try out a terriyaki chicken on a stick and some lemonade (one of his favorites!).  We narrowly avoided the fried butter, thank goodness.  Although I hear it is tasty. In hindsight maybe that would help LJ gain some much needed weight!

LJ getting Uncle Dan to escort/protect us through the fairgrounds

In lieu of cotton candy, Nate decided he wanted to play the ping-pong-in-a-fish-bowl game. No duck pond games for him. Lucky him!  We were guaranteed by the carnie that he would win something. Well, so no giant banana plush toy as a prize. It appeared to me that the lip of the bowl was too small to fit their ping pong balls, so we were the proud new owners of a consolation prize:  three betta fish.  Thank you very much (can you hear the sarcasm here).  And this is when it is not the story you think it is.  He fretted over them, naming each one Superman, Batman and Evil Robot.  He insisted that we needed to buy them a bigger tank other than the fish bowl we had. We settled for aquarium rainbow gravel.  He woke me up the first morning at 6am!@#$#$%% asking if it was time for him to feed them again.  Within the first 24 hours, two out of the three fish have gone on to better seas.  Nate was greatly saddened by this event & he may need therapy when he's older.

Hi Uncle Dan and Aunt Anne! We miss you and baby Parker.

Quote of the Day

Life is uncertain.  Eat dessert first.

~Ernestine Ulmer

via Fancy House Road

Get In My Belly!

It's not a tree house!  They're broccoli trees!  Lewis tried them the other night and Mikey liked it (sans the wood picks).  He signed for more.  He thought it was funny that I asked him if he wanted to eat the trees.  The broccoli is from our farm share and the only thing I doctored it with was butter and a squeeze of lemon.  I figure the more butter the better.

LJ's been drinking fluids much more successfully too- perhaps we can attribute his new-found skill to the heat wave we've had.  He is particular about the vessel- it has to either be a stemless wine glass (that's how we roll) or his juice bear (think honey bear but obviously not honey-thick liquids).  So now the only thing LJ is receiving via his Gtube is approximately 120 ml of water! Go Lewie go!!

Look Who's Cookin'

LJ is doing really well.  Markus, Jeni, Josh and I have all been doing the happy dance!  LJ gained weight from the last visit.  He's not quite gaining 5 grams a day as the nutritionist would like.  But he is up from 12.13 kg to 12.22 kg which roughly translates to 26.88 lbs.  On a regular growth chart this means he is in the 20%. We don't have to go back for six weeks.  In the meantime we will come up with a plan for further water reduction via gtube over the next week.

Big Blueberry Eyes_LJ Cookin' June 2011 from Jenn S on Vimeo.

Our Little CSA Harvest

School is out + our CSA farm share began a few weeks ago. This week's loot included blueberries, kale, scallions, scapes, broccoli, lettuce, cabbage, cucumbers, zucchini and squash. I've been using the Vitamix blender to get LJ's zucchini and squash all liquified so I can feed it to him.  Mikey likes it! I made some vinaigrette (same recipe as last year) for salads and marinades using the scapes. I've also made some pumpkin bread which LJ insists be dipped in applesauce but otherwise is able to eat it no problem.  I plan to make some blueberry muffins tomorrow!  I can't tell you what a tremendous emotion rushes over me when I realize LJ can experience and enjoy these summer nuances. Summer is fun now that he can have seasonal favorites like a popsicle, watermelon or lemonade.  Noodles loves to eat. That is a beautiful thing.

I'm loving every minute of it.  And guess what?  News flash:  LJ has learned to drink from a cup- its only about 1/2 ounce at each meal but it's a start.  He is only receiving 180 ml of water now via gtube to insure that he isn't dehydrated.  That's it, people, 180 ml.  That's down from 480 ml of water.  We've been most successful with water at this point, but we're slowly sneaking in some V8 Splash Fusion for extra kicks and giggles:) It's more challenging on the communication-front.  He grunts and makes some noise (and will not give up) until we realize that he wants a drink.

We play a fantastic game of charades at each meal time just to figure out what LJ prefers.  When he likes to eat, he automatically asks for more graham crackers and more applesauce...or cookies depending on his mood.  Drinks are so brand new that we are still trying to figure out which modified sign works best.  The sign for juice is fingers tapping the mouth gently or the letter "j" downward in the shape of a j.  LJ can sign "eat" no problem which is one hand placing the food in his mouth.  This is very, very close to the sign for water.  The sign for water is wiggling open fingers up and out from your mouth.  I've been trying to get LJ to use the sign for drink which is a simple. natural gesture for drink. His dystonia is too severe though, and he isn't able to complete these gestures even if it is trying with his functional, left hand and arm.

Hopefully he will be feeding & drinking 100% independently of his tube.  I'm in awe.

We have our weigh-in and check up at the GI office manana.  I'm a little nervous at the possible outcomes...but I am trying to remember something Jeni told me.  LJ is calling the shots- and it's important to remember that whatever weight he might be compared to...it is only the typical weight for his age and height.  LJ is far from typical; and he can't be pegged to a growth chart because it wasn't easy for him to jump over the tube weaning hurdle. We can't expect him to be his tube-fed weight; that just wasn't his norm...it was a consequence of being tube-fed whatever that allotted protocol prescribed. Oh, I really want things to go well so we can take out this button.  Think happy thoughts for us.

Play with Your Food

Applesauce is no longer LJ's public enemy #1. He can't get enough of the stuff - as is the case with graham crackers. We're striving for this Bert and Ernie food creation. Isn't it awesome??

Only Hugs and Smiles Allowed

Brief update regarding LJ's weight check and doc appointment last week. His weight is up from the last visit- he's 12.13 kg which converts to 26.75 lbs.  The nutritionist suggested he should be gaining 5 grams a day. We're pretty much on track if you reflect on his baseline weight pre-wean. We've made some kale smoothies and some zucchini bread and surprisingly been successful at having him enjoy eating those veggies. Noodles has also downed a few steamed pork buns & some homemade meatballs a la Emily- exploring other animal proteins and adding some variety to the repertoire.  Noodles also went to his first fair, and his favorite treats were funnel cake and lemonade! He's also been consistently taking a bottle of chocolate milk each night pre-bedtime... as long as it's from Mommy.

The nurse and nutritionist both feel comfortable with how well things are going (knock on wood it stays this way).  Consequently we don't have to go in for weekly weight checks anymore.  Next weigh-in is scheduled for mid-June.  The other thing we're tweaking is a reduction in volume of water via Gtube. Since Lew is getting fluids orally, we don't need to supplement as much through his tube.

Totally unrelated but a mantra that I try to live by:

Only Thing Missin' is the Crepe

Nate Feeding LJ a Banana with Nutella! He is a proud big brother.

Don't Worry, Be Happy

Recap of recent events:  LJ has maintained his weight since the tube wean despite having an ear infection and feeling uncomfortable.  He has the worst sweet tooth known to man. He has become completely averse to anyone besides me, myself and I feeding him (though Emily more luck than anyone else).  This makes for challenging mealtimes.  We cannot keep this up for the long haul so we are working on helping him bring his own hand to his mouth so he can be self-sufficient with finger foods.  We have been strategizing non-stop to figure out how to stop the two-year old tantrums when he doesn't get his peanut butter, graham crackers, popsicles, cookies or other favorite foods. 

It turns out every child does in fact need to have some green veggies and different varieties of protein.  We continue to search for the magical item(s) that might be accepted into LJ's repertoire of food. This week I bought some tofu, Barilla Plus pasta and some whey protein powder suplement.  I was successful at getting LJ to try the tofu, some basil pesto and also some Spanikopita all in a weeks work....as long as it was all washed down with some Nutella or peanut butter (what crazy combinations!).  All the while we are keeping our fingers crossed that he is eating enough and will not lose any weight at his next weight check, this coming week. 

Lew's right hand has been tight this week and is also causing added concern.  His therapists and I are all having a great deal of difficulty prying it open.  It can stay fisted like this all day, and at points he has blisters and skin peeling off his palm when I finally do get it to open up.  We've been going to our therapist at Children's who has made several different, custom hand splints to try to offer his hand some relief. She has also used joint compression and brushing techniques to further resolve the situation all to no avail.  We are meeting with the Psyiatrist to discuss the post-Botox aftermath the first week in June.  It's not clear to us what our options are.  It seems to me that his hand was better off before the Botox (though I can't prove it). The Botox was effective loosening LJ's right pec and right bicep, but that's worn off and  but his hand is quite useless to him right now. One thing that has been brought up by the doc and LJ's PT and OT in the past was the use of a medication called Artane. I hate to give my wee one a medication that he will need for the remainder of his life, especially when there are side effects.  It would be so great if there were some alternative treatments!

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An incident in the grocery store earlier this week has stayed on my mind. An older gentleman asked me what was wrong with LJ's hand.  LJ was riding in the grocery cart, sporting his "resting hand splint". I explained about LJ's cerebral palsy and that due to his tone the splint gave that hand and arm some much needed relief. But of course, the root of my discomfort lies in the fact that we are stuck in no-man's land and don't know whether or how we can help LJ's hand

The guy in the store was quite nice.  I don't and can't expect everyone in the world to be as sensitive to these adversities especially when they are just kids.  We all have our different trials and challenges in life.  LJ has just been working so hard and he is so empowered by his eating since the tube wean.  I just can't let a minute go by without trying to make the world a little easier for LJ, whether that's researching alternative medicine or signing up for a new therapy. People (kids especially) can't see that he didn't ask for things to be this way.  While they aren't intentionally being mean, it still hurts.

Perhaps I was already at my breaking point for the week; perhaps all the little moments this week just made me weak.  Who really knows why we have such strength some of the time and crumble during others.  in any case, I read a beautiful, moving post that brought me to tears to complete the week. On Following Elias the Boy that Could, here's a link to the post that made me turn to the Kleenex.  I think no matter who you are and what you have gone through or are going through in life, it will hit a chord. We all just want to be worry-free.