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!

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!

The Power of Choice

Silly Daddy, That's my Bib!

We can't believe Noodle's tube wean has come to an end. It has been an amazing achievement. With Markus and Jeni's help, we gleaned from their insight and gave LJ the chance to experience hunger and the choice to decide whether food was his public enemy number 1. He made the choice to join the eaters of the world! Thank you for teaching us that there is a power of choice. For without this lesson, we would have thought we were teaching LJ to eat. But no, no, that's not the case.

We continue to work with LJ to gain confidence in food, enjoy the tastes and hopefully he'll also learn how to drink water. Baby steps.  LJ is no longer getting any food through his gtube. He's already packed the lb's back on- weighing in at 28 lbs 1 oz yesterday. Since he still drools quite a bit, he can't get enough water to prevent dehydration so we are supplementing him with additional water in his tube. We don't know how long the gtube will be kept in (if all goes well we hope it can be removed in 3-6 months once we are sure how LJ handles these big changes). For now, it's just bling. To insure that LJ remains as healthy as possible, we will also keep a food log in the short term and possibly do some blood lab work done in the long term. We'll also have weekly weight checks at the doctor's office for the time being.

Thank you Markus and Jeni for your dedication, patience, spirit, humor, gentleness and knowledge. We are grateful. There aren't enough words to thank you for such a gift. I feel so lucky to simply have had the opportunity to wash LJ's disgusting, food-encrusted, car seat cover for the very first time in his little 2.5 year lifespan. Wait.  Then he drank milk (albeit chocolate) from a bottle for the first time last night - 1 oz!!!  Feeling even luckier that Jeni doesn't have to travel around the world to continue helping us shape LJ's eating decisions.  Plus we've had two, consecutive, successful days of solid sleeping through the night.

Our hearts and plates are so full! You are both brilliant and inspiring! Markus, have a safe journey home. We'll miss you but look forward to seeing you the next time you are visiting Washington, DC.  Can't wait to have a picnic with you. Happy weekend everyone!

Lil Bites

LJ is an Eater Now!_Tube Wean April 19, 2011 from Jenn S on Vimeo.

Peanut Butter!

I like peanut butter, creamy peanut butter, chunky peanut butter, too! LJ had 2 granola bars dipped in whipped cream for breakfast this morning.  He tried some egg salad too.  Then for lunch he polished off about 6 tablespoons of Jif creamy peanut butter on sugar wafer cookies.  Since he still isn't quite able to manage drinking and the peanut butter was so sticky, we give him drops of water from a straw in between bites. 

Peanut, Peanut Butter_Tube Wean April 15, 2011 from Jenn S on Vimeo.

LJ gets 4 ounces of blenderized food flushed with 4 ounces of water at bedtime just so he can get a good night's sleep (us too!).  The night-time tube feeding will not have any effect on our progress since he will be happier and better-rested when we start working the next morning.  Its also safer for him not be too dehydrated. Markus and Jeni also believe that if we let him get too far zoned out he may get sick which would obviously not help the tube wean.  With each day, it is getting better and better.  LJ is doing an awesome job.

Happy Hour with Daddy and Markus :: Popsicles and Chicken Nuggets

Not Feeling So Hot

Since we're not feeling so hot (eg pretty cranky McCrankerson with periods of crying, confusion and overall pitifullness), and are a bit sleep-deprived (eg big black circles around the eyes), we decided to take our meal in the bath! (Why are we doing this? Oh yeah, to help LJ enjoy food!) We're doing everything we can to keep LJ comfortable and hydrated (eg water-dense foods like melon and cantaloupe and we're watching for good soaked dipes). His little body is getting acclimated to new sensations, foods and oral motor skills, so if the boy says he wants lunch in the bath... then that's just what the boy will get. Nope, it doesn't matter how many bathes he has had today.

It goes without saying, this tube weaning process is very scary and intimidating.


Popsicle Party in the Tub_Emily and LJ Aril 13, 2011 from Jenn S on Vimeo.

Breaking Up Is Hard to Do

LJ was lacking in energy today and didn't feel like eating as much.  Clearly, fatigue is starting to set in.  On the statistical front, Lewis has lost about 1.5 pounds.  Not alarming when you consider the facts.  Nonetheless, if LJ comes close to hitting the 10% mark for some reason (he's at 7-8%), we will not stop the wean, but supplement with small amounts of bolus feeding to carry LJ through (before eliminating again) and consult with the GI doc if that does not do the trick.  So we're keeping an eye on him, but the experts assure us he's on the right track.  He's certainly interested in eating, that's for sure.

Markus, LJ and me at the Doc's office

Markus entertained us all with his party tricks whilst at the doctors office this morning.  Meanwhile, Jeni got LJ to suck a lollipop in the waiting room.  The team is in a good place, making much progress and everyone is very supportive.  Noodles is pulling the pieces together though and he has started associating food with hunger.  He does things, for instance, pulling his shirt up to gesture toward his gtube button.

Markus entertaining us at the weigh in

LJ is really proud of himself.  Every few minutes he signs "go" and "eat" to anyone who'll pay attention.  He is trying to narrate to everyone that he is an eater now.  He gets a big smile when you confirm that he is a big eater...and ask him whether he just ate some mac 'n' cheese or what not?  Though he wasn't much interested in lunch, dinner was an awesome two hour spread that started with french fries and stretched out to apple breakfast sausage and then to good old watermelon.  He even insisted on snacking in the waiting room at the Doc's office.

Nate helping Markus take a Lego break...

Our Day in Review

Hungry Noodles:

Thirsty Noodles:

Markus Feeding LJ some Watermelon_Tube Wean 2011 from Jenn S on Vimeo.

Self-Serve

After the library today, we had an adventure to Toby's Ice Cream parlor.  LJ was smitten with the mango-orange sorbet! Happy weekend everyone.

Grub

LJ at Hungry Hippos with friends, G and Tracy_March 11, 2011 (29 months) from Jenn S on Vimeo.

Food picnic at therapy today included strawberries, orange wedges, a peanut granola bar, veggie straws and goat cheese crumbles. Lew did great- he was ready to dive right in even before our friend, G, arrived.  It was bittersweet today, since we have to take a break from Hungry Hippos for a little while.  The reason is because the tube whisperer, Markus, is coming to help Jeni wean LJ from his feeding tube.  He'll be here April 7th for two weeks!

So Markus is coming. Why am I so scared? Propelled by an uneasy present, the future is once again storming in on me. Will our son ever eat (truly eat) pizza, mac n cheese, tater tots, french fries, hamburgers, chocolate chip cookies, dumplings, sushi or roasted chicken? I feel sad for the months and years he's missed sharing any of his brother's favorite foods and all those similar food experiences.  The cute little play "Food Face" plates I bought are missing all their facial hair, bad hairdos and eye patches!  To us, our kitchen and dining room are our home.  We're "foodies"- we like to cook and we love to eat almost anything (except red peppers) gourmand. And thus my dilemma. I'm really trying to reframe our story and have a positive attitude without being obsessed with food. It's obviously about the food....but its also about the fun...and the enjoyment.

and when you're up you're up and when you're down you're down
and when you're only half way up you're neither up nor down

That's why I'm scared. I have no control. I cannot force him to eat spaghetti, garlic bread, or hot dogs nor pancakes drenched in syrup nor can I force him to drink a juice box, hot chocolate or milk. These are such normal things that I cannot have, he cannot have. I want each morsel of food to go in his little mouth. I want to explain to him where the food came from. I want to say "three more bites, and then you can have ice cream."  Or when he gets sick, I want to be able to give him his children's Tylenol in that cute little plastic dosing cup (or better yet, homemade chicken noodle soup).  I want to hear him nagging me in the cereal aisle for just one box of Fruity Loops puhleeeeeze.  But I can't, not without a lot of hard work.  And I like hard work.  In fact, I like to work and I like a good challenge. You see, I have hope.  I'm just afraid that it might not work and what will happen then? Let Round Two Begin. We'll have to wait and see.

Crunch Chomp Cheerios

Today we had a great food play session- including Nate as he was making soup with all the same ingredients in the sink just beside us. LJ didn't mind the texture of cheerios and he signed several times that he wanted more. He didn't swallow much but he tolerated it. He gagged once as you will see here in the video, but where that would have set him way back several months ago, he carried on and self-regulated right thru it. Today's menu involved crumbled goat cheese (very gourmet), strawberry jam, buttered noodles, Banilla yogurt ("banana-vanilla"...not his best friend), bread and vanilla soy milk (better than unflavored). Cheerios too.  He still doesn't have a pincer grasp, so I have to feed everything to him.


Chompin Cheerios_January 23, 2011 from Jenn S on Vimeo.

In other news, LJ's ears have been acting up. We went to the doctor on January 7th for lots of ear goop. There was so much discharge the doctor could only see one of his ear tubes. The doctor prescribed an antibiotic drop to put in his affected ear. It didn't work so we visited our pediatrician this past week and he got put on an oral antibiotic. Doctor Pediatrician couldn't see either ear tube. The med seems to have cleared up all the discharge but I don't know if the infection is cleared up yet. Lew is still super fussy and only wants to be held/carried around. No sitting will do. We have a follow up with the ENT tomorrow and they'll be able to look with a microscope to see if the tubes are in the proper place and perhaps they will also be able to get all the discharge sucked up.

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

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.

Keeping Pace

We've adjusted the lovable Noodles' diet.  He's now getting 100% homemade blended food through his G-tube button.  We slowly phased out the Elecare formula from his nutritional intake over the course of the last few weeks.  He is tolerating it folks and his retching episodes seems to have decreased! His poop is real, human poop and lots of it- especially when we are in a very inconvenient place.  Timing is everything!

We've had many consultations with our nurses and nutritionists, and I bought this great "cookbook" called Homemade Blended Formula Handbook.  We're armed with a crockpot and  this new snazzy, uber-powerful Vita-Mix 5200 (it's a commercial-grade blender) to help our little cutie patootie pack on the weight and get ample protein, vitamins and minerals without being too much of a time suck for the family.  His stomach has gone through the "normalizing" period and we seem to be well on the road to a stronger, happier, more talkative kiddo without all that formula sloshing around in his belly aggravating his reflux.

He's been in a great mood.  Here he is shooting hoops with Cathy, our OT, earlier this week and mastering the Up and Go gait trainer.


Superstar LJ_Oct 2010 (2 years old) from Jenn S on Vimeo.

When Life Gives You Lemons

When life gives you lemons, our new motto is drink lemonade. In this video you can see LJ's face pucker when he tastes the lemonade. But obviously he likes the flavor, because he kept going back to his sippy cup for more.


Banana Phone, Lemonade and Gingersnaps_10.16.10 from Jenn S on Vimeo.

LJ now thinks he's a moviestar!

Retching then Food Fight

The tube weaning Whisperer (aka Dr Markus Wilken) is coming!!! He'll be here before Thanksgiving. We're thrilled to meet him and introduce him to lil LJ. And looking to the future when we may finally have an eater... We're practicing being around food a lot. Until the much anticipated visit, these videos of Oscar and LJ at Hungry Hippos will have to suffice.

Food Fight at Hungry Hippos_Oct 15 2010 from Jenn S on Vimeo.

Lewie the Lip

Well.  LJ's bottom lip could have practically taken up the whole room!  See video for proof....right around the 11 or 12th minute.  The Hungry Hippos was different from all the others right off the bat.  For starters, Oscar wasn't there due to illness.  The intimate nature of the session was less-than-appreciated by Mr. Noodles.  The other thing that might have influenced his willingess to try oral feeding was his starting location.  Usually LJ is in his bumbo seat.  This time he tried sitting in his wheelchair with the tray attachment.  As you will begin to see, these did not bode well.


Lewie the Lip_Hungry Hippos on 10.8.10 from Jenn S on Vimeo.

On the other hand, Lewis did attempt to pucker his lips to blow bubbles in a straw.  He clearly had a lot more saliva production- probably because he was smacking his lips and moving his tongue in and out.  The variety of foods we tried to get him interested in were orange slices (he liked these at school snack one day last week), mango slices, crunchy cheese soy crisps, wheat thins and water.  He got the biggest kick out of pretending to wipe his mouth clean!  I'm not sure what that says about the finality of him being "All Done!" but he was into it so we rolled with it.

Earlier in the week we had speech therapy.  Danielle uses a method known in the speech world as the PROMPT Conceptual Framework. PROMPT stands for "Prompts for Restructuring Oral Muscular Phonetic Targets".  This is a hands-on approach and thus the therapist uses her hands to cue and stimulate articulatory movement, at the same time helping LJ to limit unnecessary movements.  This philosophy embodies that the therapist must always choose goals that will help the client achieve functional language and intelligible speech so that social, emotional and academic interactions with the world are possible.  There is more information about how environmental factors, cognitive linguistic factors, physical-sensory, communication, social-emotional and behavioral outcomes all impact the child's success.

Finger Lickin' Good

LJ exchanged food and cooking utensils with his new friend Oscar today!  Not only did he interact with fig newtons again, he explored watermelon and dried apricots for the first time. Get this. He tried to lick, that's right, lick the apricot.  This new excitement has me food shopping thinking about all the possibilities to come! Warning, the video is super long- thirty minutes to be exact. I fully expect any of you out there to fast forward to the good parts.  Happy Friday!

The New MD

"Doctor Noodle"_Keeping Entertained with a Stethoscope While Waiting for another Doctor's Visit

the new get up

We had our second opinion appointment today.  Long day.  We had our appointment at 2pm at Children's Hospital but didn't get seen until 3pm.  There must have been an emergency or something because the medical professionals kept getting interrupted- we didn't leave the hospital until 5:30pm.  On the bright side, the doctor and nurse couldn't have been lovelier.  They determined that increasing the size button or changing the brands really wouldn't change the pickle we're in.  But we've got this dandy new thing referred to as a Hollister clamp (read more information than you care to know about the good, bad and the ugly) and vertical drain tube device that's supposed to help LJ's tube hole get smaller which in turn will get the leaking under control.

The real obvious downside is how unattractive this contraption is.  I'm not sure the ladies are gonna find it quite so "come-hither".  Luckily, it works the same as the button we're used to and we're supposed to be able to switch back in as early as a couple of days.  Until then, we'll keep a mesh wrap around LJ's middle so he doesn't mess with it.

The other bummer is that they used to do a lot of tube weans back when this doc was director of the department.  Unfortunately, they don't do that, since they no longer have an in-patient feeding-based program.

I'm sure there's more I'm forgetting to tell you, but to end on a bright note, the Doc was very open to working with an interdisciplinary team in order to get LJ tube weaned within the next year or so...:)

PS: LJ used his iPad in the lobby waiting room to tell everyone, "Hi. My name is LJ. I need some hugs and kisses." Ridiculously funny!!