Operation Feeding Tube Freedom

Today was a good day.

I don't want to say too much because I don't want to jinx it, but this could soon be a part of Josie's past:

...because Little Miss JoJo is working really hard to get off the feeding tube.  And she now consumes all but 5oz of her daily calories orally!  We have been desperately seeking an effective path to G Tube independence for more than a year now and there is finally light at the end of the tunnel!  Hallelujah!!!

We took a little road trip to visit Josie's GI doctor today.  This particular trip was speeding ticket free (woo hoo!  Go me!) so that was reason alone to celebrate.

As usual, Josie tried to ditch her shoes anytime I turned my head. Here she is attempting to put them back on after her 400th lecture from mom.

 Josie was a very good girl for the hospital staff.  She was eager to discuss anatomy (by identifying her body parts), pop culture (by requesting both "Call Me" and "The Piña Colada Song") and she enjoyed exploring the functionality of the medical equipment with the resident.  I've never seen the doctor hand their medical devices to a toddler and I cringe to think of how much they probably cost, but Josie truly enjoyed the experience.

After receiving such promising news about the widely anticipated end of our g tube days, Josie and I decided to celebrate.  We paid a visit to the mall food court where she enjoyed some delicious curly fries.  We normally avoid fried foods but this was a special occasion and Josie loved it!  I loved watching my little girl consume food (and even a little bit of milk from a straw) like every other kid in that food court!

We decided to escalate the celebration by taking a little ride on the Merry-Go-Round but after further consideration, I nixed that idea so we opted to just pose for a photo by it.  Shoeless JoJo strikes again:

When we returned home, Travis asked me why we didn't actually ride the carousel.  I explained to him that I didn't know what to do with the stroller and my purse and that I didn't want anyone to steal them.  He laughed and said that Dateline isn't exactly doing exposes on the rampant rise of stroller theft at community carousels in the Midwest and that we probably would have been safe.  But hey, that's why he's the laid back one and I'm the neurotic one. 

While I'm hesitant go into further detail about Operation Feeding Tube Freedom because I don't want to speak too soon, I assure you that more information will be provided once our goal has been achieved.  As a desperate parent who spent many hours scoring the Internet for information on how to get my child off the g tube, I am happy to share any details of our journey that can possibly help someone else in our shoes so stay tuned!

Week In Review

We have been noticeably absent from the blogosphere but with good reason - we have had a frantic, jam-packed, head-spinning, mind-losing, frenzied week of non-stop commitments.  Here's a summary, by the numbers:

2 - Number of road trips we took this week to the Down syndrome clinic where Josie had appointments for feeding therapy, physical therapy, speech therapy, a Down syndrome-related check-up, and a new Mic-Key button.

25 - (miles per hour) The speed I should have been going when I got pulled over by a law enforcement official during one of the aforementioned road trips.  Seriously, people - 25 MPH is difficult to do!  It's like riding your brake!

0 - Number of tickets I had received prior to Friday.  Mr. Police Officer did not seem impressed by my pristine driving record.  He did not care that I was voted "Best Driver" in high school.  He didn't even drop the authoritative scowl when I rolled down the window and Josie excitedly proclaimed "Glasses!  GLASSES!" when she saw that his eyes were covered by dark and mysterious shades.   He eagerly handed me my first ticket, EVER, hereby obliterating my flawless driving record.  I know I deserved it but it was still a major bummer!

5 - Number of days this week my girls wore matching/coordinating outfits.  Even though the cheesiness quotient is high, I can't help myself! 

4 - Number of folks we encountered this week who recognized us from the blog.  It's always so much fun to encounter blog readers even if most of you do seem completely disappointed that Leanne isn't with us.  I know, I know -  we love her, too! 

And the following are filed under "I can't count that high":

• Number of times Josie defiantly told me (and every therapist and medical provider) "No!" this week. Hello Terrible Twos!
• Number of Usher Songs I've heard this week. - I'd like to apologize to anyone who was dining at Buffalo Wild Wings on Wednesday night.  I realize no one wants to hear five Usher songs in a row topped off by Justin Bieber.  But when it makes your kid sit happily while you enjoy your meal, you'd gladly feed the jukebox dollar bills to hear the vocal stylings of Atlanta's finest R&B crooner.  And it was a genuine accident that the one song played three times in a row.  Travis was mortified.  I said, "No one knows we were the ones responsible" at which point he gestures over to Josie who was the only person in the restaurant gyrating in her seat with her hands in the air proclaiming "Hands up!"  ...Busted! 
 

And now for the photos...

Travis and Josie in the waiting room at the Feeding Clinic

The girls are still practicing walking with the gait trainer and it's become apparent that the motor is in the back. 

Travis' Dad was in town on business this week and the girls were preparing to show Papa how this new system works.  Merryn turned around to wave to Papa and without warning, Josie took off!  Merryn's feet fell out from under her but she hung on to the gait trainer for dear life and was drug down the hall as Travis and Papa collapsed into laughter.  It's a good thing Mom was there to save her :-)

Matching ensembles featuring summer's hottest trend - neon!  80's Flashback!

Speaking of our affinity for matching attire, we couldn't turn up for the first day of swimming lessons without coordinating strawberry bathing suits.  Lookin' good, Ladies!

Three guesses as to the music Josie was jamming to in this series of photos...

Funniest photo of the week

Note: The following two photos were taken during nap time so neither subject was up for posing.

We found time to squeeze in a long overdue trip to the doggy day spa for Miss Lillian.  Drop off and pick up were a sight to behold with a double stroller bursting with energetic munchkins and a feisty 4lb Maltese in the storage compartment below.

The most cautious child to walk the planet got her first bruise today when she somehow banged her head against the foot board on our bed.  Two years old and her first injury - a stark contrast to our youngest child who is a perpetually-bruised, fearless, daredevil.  Maybe Merryn is finally rubbing off on JoJo.  After a phone call to both Dad and Mama Hop where Josie pathetically proclaimed "Head!  Head!" over and over and milked them for all of the sympathy they could muster, she was finally able to move on with her day.

The length of that blog post undoubtedly compensates for a week of absence from the blogosphere.  Let's pray that this upcoming week allows us more downtime for blogging and other fun activities.  Stay tuned - Aunt Leanne will be back soon!

Drinking, Bribery, and Becoming Cool

There have been many blog posts devoted to Josie's difficulty with drinking and our attempts to get her off the feeding tube.  Unimaginable energy has been spent on this pursuit by ourselves, countless therapists, medical professionals, and well-meaning friends and loved ones.  Always searching for answers, I recently read an article on a behavioral occurrence called "Shaping" ("Helping Children Cope with Everyday Activities, pg 11).  In a nutshell, shaping is when continuous reinforcement leads to a gradual change in behavior.  Shaping can intensify an undesired behavior but it can also be used to ultimately move an undesired behavior in a positive direction.  Essentially, a behavioral change can occur by having the child take gradual steps towards the desired outcome and using positive reinforcement (bribery) to celebrate each success.

Desired Behavior: Drinking (Pediasure, people.  We're not "shaping" at a frat party)

Gradual Steps: We started with 3 drinks per meal, built up to 5 drinks per meal, and  we are currently on 10 drinks per meal

Positive Reinforcement: Sunglasses (Josie's latest obsession)

Unanticipated Outcome: I may have misinterpreted the article; I'm not sure if my "shaping" technique is actually teaching Josie to drink or to count to 10.

Please excuse Josie's sumo wrestler hair - it's the quickest way to get her hair out of her eyes before breakfast.

I'd like Josie to hold the cup by herself.  She can; she just doesn't want to.  Once again, "shaping" involves gradual steps.  Ultimately, I'd like her to receive all of her required fluids orally and no longer use her g tube.  We're still a ways off but it's progress.  I'm getting what I want, and Josie is getting what she wants so everything is cool!

New Year, New Camera

I'd like to extend my heartfelt gratitude to everyone who left a comment in rememberance of my father.  Your support brings comfort during this difficult time.  He's been gone less than two weeks and yet there is already so much I wish I could tell him; like how I got a new camera.  He would have been pleased.

Yes, after nearly two years of parenthood and thousands of photos, we finally took the plunge and upgraded from a trusty old point & shoot to a DSLR.  But I quickly learned that a snazzy new camera doesn't automatically make you a professional photographer. 

Exhibit A:

Yeah, I was off to a rocky start.

My munchkins were in bed by the time I was able to get the camera out of the box and start fiddling with it.  Lucky for me, our four-legged family member, Lillian, was more than happy to be my practice subject.  However, she wasn't interested in posing for a still life portrait.  She prefers a live action shot, showcasing how she earned her nickname, "White Lightning".

She may be almost 9 years old, she may weigh less than four pounds, and she may resemble the little battery operated dog that does flips outside of the toy store at the mall, but she fancies herself both fast and ferocious.

Yesterday, Josie had physical therapy which provided another fun opportunity to whip out the new camera.  Check out Little Miss Josie JoJo - bearing weight on her feet AND smiling while doing it!  Talk about a Kodak moment!

Josie also had feeding therapy yesterday.  Since I had my new camera out, she figured she would show off her self-feeding skills.  Pretty impressive...

...although it was a little bit of a hassle.  You see, after caking herself in food during feeding therapy, Josie required her second bath of the day.  I also went to the trouble of washing her outfit again while she napped.  Why?  Well, because I was absolutely determined to get an adorable shot of my girls in their matching ensembles before sunset!

The genuine smiles, sparkling eyes, and unsolicited hand-holding captured here made it all worth it!

Move over, Anne Geddes!  We're coming for you ;-)

Big Man, Little Cup

This blog has documented our ongoing attempts to free Josie from her feeding tube dependence.  We've followed the advice of therapists, gotten creative, and tried some crazy things.  Lately it's occurred to us that modeling is such a powerful force when it comes to Josie's interest in food.  In other words, if it's on our plates, she wants it.  If we're feeding her and she's refusing to eat her meal, often times pretending like we're eating it will spark her interest again.  So when her interest in drinking plateaued recently, we swallowed our dignity and decided we would incorporate modeling into dinner time.

Exhibit A: Big Macho Man, Little Bear Cup

Cheers!

Yes, my husband, the picture of masculinity, has begun drinking his nightly beverage out of a little plastic bear with a straw. 

Just don't tell his college frat buddies! 

Feeding Therapy Revisited

Can someone please explain to me how I can try every sippy cup, straw, and other beverage dispensing device on the market; I beg, plead, coax, bribe, cheer, high-five and model during meal time; I research like crazy, seek the help of professionals, and the advice of experienced parents only to have this child still utilizing her feeding tube three times a day because she refuses to drink?  And yet earlier this week I left an empty baby bottle unattended in the playroom and walk in to find this...

Josie's occupational therapist works on her feeding skills once a week.  Every few months we check in at the local pediatric therapy clinic and showcase her feeding skills which is exactly what we did yesterday morning.  Just like last time, Josie decided meals were best consumed barefoot and she promptly discarded the adorable boots she was wearing.

The advice we received was pretty basic (praise appropriate mealtime behavior, continue to reintroduce previously rejected foods, "blenderize" (is that a word?) table foods...) but one new idea surprised me: give her a bottle.

What?!  She's 18 months old!  Are you serious?!

Apparently there is a new school of thought that the sucking skills that start out as instinctive, when lost through g tube dependence, are imperative to rebuild both for eating and speech purposes.  The therapists pitched it as a way to get extra liquid into Josie throughout the day, further lessening our reliance on the g tube.

So I say to myself, 'Self, I'd give her Pediasure through a beer bong if it got her off the g tube' (just kidding...it probably wouldn't be appropriate to take to preschool) and when I got home, I made two bottles: one for Merryn and another for Josie.

Josie mostly just chewed on the nipple.  I even tried cradling her and feeding her like I feed Merryn.  That lasted about 5 seconds. 

These feeding therapists and their crazy ideas!  But we roll with it in our continuous efforts to get that Mic-Key button removed once and for all.  She'll get there eventually! 

On another note, I find it critical to point out that my girls sported coordinating outfits and looked ridiculously cute (in my humble opinion)...

Until she's conquered "nice hands," Josie will be photographed in the foreground of the picture, where the temptation to show me where Merryn's "eye!" is by gouging it with her finger is significantly lessened.

THIS looks cute initially, but it has bad idea written all over it:

P.S. I do put footwear on my kiddos but Josie promptly removes it - for both of them.  She thinks she's doing Merryn a favor by yanking off her socks.

I'm rambling now.  The End!

Christmas in Therapy World

While most of us celebrate Christmas in December, therapists must celebrate Christmas in June, because last week, they showered Josie with an abundance of gifts! 

Let's start with physical therapy.  Did you know kids with Down syndrome can be super flexible?  Check this out:

Ouch!  Does that make anyone else cringe?!  Well, this excessive hip abduction is an attribute that physical therapists do not want to encourage.  Therefore, Josie's PT brought her a gift that will help: introducing Hip Helpers!  Check out these snazzy electric blue spandex shorts that are sewn together at the crotch:

This calls for a round of applause!

These shorts do not allow Josie's legs to extend at a 90 degree angle from her body as shown in the first photo.  Instead, they promote proper alignment and encourage correct patterns of moment.

Get Lance Armstrong on the phone - she's ready for the Tour de France!

We also spent a great deal of time focused on feeding therapy last week.  Our mission: increase Josie's oral intake to the point where she no longer needs that darn feeding tube!

Josie wore her strawberry outfit to channel good food vibes. 

(Mom wants you to know that Josie never leaves the house without shoes, however, they rarely last throughout the duration of an errand.  Despite Mom's constant reminder of the old "No Shoes, No Shirt, No Service" policy, Josie prefers the au natural look from the ankles down.)

While this particular feeding therapy session did not produce the groundbreaking miracle mom was praying for (yes, I really went in wanting a Pentecostal tent revival type scenario in which we emerged fully healed and free from g tube dependence), we will remain steadfast in our efforts to eliminate Josie's reliance on the feeding tube. 

Josie's Occupational Therapist wants that, too.  That's why she brought us these nifty new feeding therapy devices.  Here is Josie with her brand new Z Vibe:

It's a vibrating pen-like thing that is designed to provide sensory input to increase oral awareness and decrease oral sensitivities.  Josie digs it!

She also brought us this textured "Grabber" that Josie can hold and chew on.  It helps promote tongue and jaw movement and oral exploration. 

Oh how we love receiving gifts around here.  In exchange, Josie's gift to her therapists will undoubtedly be hard work, complete cooperation, and positive outcomes! Right, Josie Jo Jo?  Good deal!