The Boy Who Swallowed Three Tiny Bites of Barium-Infused Sweet Potato

Better late than never right? I've finally uploaded the x-ray "animated" video of LJ's swallow study back in May.  I understand some of you might be WEIRDED out by the footage so click on the below link as you wish.  A speech pathologist from St Joe's gave LJ some barium-infused sweet potatoes so that the contrast on the x-ray would show how well organized (or disorganized) his swallow was and whether he could protect his airway. We were nervous going into it because he had a barium swallow study done before that in September 2009 and he failed...so we had to stop feeding therapies because of risk for aspiration. But this time he PASSED it with flying colors, on both the thin and thick purees, and it was the reassurance we needed. There's still some thought that some purees may be making it up LJ's nose but we didn't see any hiding out in the below video.

St Joe's Bootcamp Day 20-Barium Swallow Study Video

It is so cool that technology like this exists. The knowledge it affords people with dysphagia and other swallowing difficulties is tremendous.  Here's a link that explains the swallow study more fully.

today is awesome!

Well done, LJ! We are still figuring out our feeding team's plan of action, but one professional that has been a constant support to us has been our OT, Jeni. She has been working with us on oral desensitization since the day she came to us last March 2010 through Early Intervention. She has been a godsend to us and is the one responsible for putting us in touch with the mommy I referred to in a previous post, Jenny. She is the one who has kept on at it even when we've been so discouraged in months past. She is like the mother bird, feeding me worms, pushing the feeding therapy and in the initial months when LJ came home from the NICU, helping to devise a sleep plan that might help on so many other fronts to calm down LJ's nervous system.  And today, she and LJ connected on higher levels yet again. It was huge...LJ was bringing the cup to his mouth....he wanted to feed himself the pretend food. And afterward, he even wanted to pretend to take a nap- with a kitchen towel as his lovie. Lots of pretend play goin on around here.  We are on the right road!

A Year Later, Still Tube Feeding....

LJ still hasn't progressed with his oral intake.  His food aversion is still definitely alive and kicking. But, he at least shows interest in food and by that I mean he tolerates food, he just refuses to swallow it.  We've been talking to some new doctors about whether LJ is a candidate for a tube weaning program and we have a second opinion with a GI doctor about our options regarding his Mic-Key button.  This other doctor supposedly works with a nutritionist who is much more compassionate about their approach to finding the right recipe of calories from tube feedings and calories from pureed table foods fed (this would add bulk and also really help on the severe reflux-front) via syringe into the tube. The ultimate equation would actually be a recipe for calorie reduction so that Noodles can actually experience hunger and getting us closer to having his Gtube removed.

For those of you that don't know, LJ's button has been leaking every time he has a bolus feeding and causes great discomfort when the stomach acids touch his skin.

Our GI doctor thinks the hole is too big, and since he's in the correct size Mic-Key button he should be admitted to the hospital so they can take out the Mic-Key button and watch the hole close up- putting a button back in at the very last possible second. That makes me way too nervous.  If it doesn't work, he'd have to have another surgery and get a G-J Tube.  G-J Tubes are aptly named because there are two separate routes included inside the feeding tube.  One route is delivered into the stomach (gastrostomy) and one goes directly to the small intestines (jejunum).  This entails that all feedings be done on a 24 continuous (much slower speed than what we currently experience) basis though since you can't overload the small intestines without a complete catastrophe. We're so NOT interested in taking backward steps; we hope LJ can become an eater, so you can assume why we are seeking another opinion.

We have been grateful for the dialogue with Dr. Markus Wilken in Germany and fellow blogland friend, Jenny, in Seattle who's beautiful, little boy Heath has officially become an eater.  Markus says that the earlier a child can control his own needs, the better the self-regulation in many other areas as well.  The first step to helping prepare your child for a tube wean is making sure your child is not afraid of food.  He also says "on the other side, an interest in food, eating, being fed is always a good sign your child is ready though not in all cases an inclusion criteria." There are lots more influencing factors.  Unfortunately we just missed Markus' visit to Seattle two weeks ago, so we are trying to "virtually" work with him and finding new members for our local team to better understand (affirm) LJ's aversion. Jenny gave me such wonderful words of wisdom, "All we can do is respect that battle and create the conditions for him to make his choice by allowing him to be genuinely hungry, and supporting what comes as a result of hunger." I think as tough as this is for Josh an I, it's got to be 100 times tougher for LJ.

Here's a journal of one of our food playtimes: we tried 5 different types of food- applesauce, pureed carrots, diced avocado, french fries and apple rings. LJ still would much rather feed others than be fed himself. There's also some video of him playing with his iPad and pretend food.  He prefers the latter!


Play With Your Food, LJ from Jenn S on Vimeo.

LJ Using iPad to Choose Play Food from Jenn S on Vimeo.

Encore Performance

Noodle's Physical Therapy from Jenn S on Vimeo.

Blissed Out

cool nights  ::  group dinners ::  Ithaca Beer Company ::  boat rides  ::  great conversations  ::  farmer's market  ::  Wings of Life Salad (a pile of fresh baby greens, three kinds of cheeses, two of olives, shocked broccoli, brown rice, chickpeas, spicy tofu cubes, cashews, almonds, and sunflower seeds, a hunk of bread, and lemon-sesame dressing) ::  bonfires  ::  stargazing  ::  s'mores  ::  Finger Lakes wine  ::  Ithaca Bakery  (the Lindsey sandwich and the Octopus are still my faves)  ::  tractor rides  ::  sailing  ::  sunshine  ::  smiles ::  guy's golf outing ::  friends ::  skipping rocks ::  looking for washed up glass  ::  the Piggery  ::  Nate quotes such as " I love me some cake!"  ::  exploring in the creek  ::  quiet time  ::  puzzle mania

Joyeaux Anniversaire

We are going to birthday it up today:) We love you Josh! xoxoxo

Our Happy Place.....Ithaca

I was feeling not so great about our demanding schedule/stress levels all last week, nothing could hold me up. I'm at peace now, and I woke up this morning feeling great (it also helps that LJ is such a tough cookie and Nate is/will always be my baby). We are going to visit our friends, the Browns and the Wittinks at Cayuga Lake!  We had a stay-cation at the beginning of the week- I worked on customizing P2Go for LJ's iPad, we cleaned out our office files and then we did an E-Feed video conference with the folks at St Joe's in Paterson, NJ before traveling. More on that later. Hope you have a wonderful week wherever you may be.

LJ and the Impressive Fracture

Happy Saturday. LJ is presently tearing around the house in his walker, terrorizing his cousins and brother. He's got a big grin on his mug. You'd never guess he has a fractured skull...

When last we saw our fearless hero, the X-rays were clean. That was Monday. On Thursday afternoon, we got a call from the Doc's office - the radiologists' report found some abnormalities. Please go have a CT scan right away, just as a precaution. LJ and Jenn ran off to the CT scan place and got that taken care of, straight from the swimming pool. Then back to the Doc for a preliminary read of the scan. Doc sent us to the ER at Children's hospital, since that's where they had a pediatric neurosurgeon on duty. Gulp.

I met Jenn and LJ at the hospital straight from work. I was supposed to be headed to the airport to pick up my niece, nephews and sister in law, coming in from FL. Luckily (for us, if not for them) their flight was delayed, so I was able to be in two places at once. LJ was in a great mood - he was very responsive and smiley while we waited. At this point, it had been more than a week since he banged his head, and he'd really been back to himself since shortly after it happened.

Truth be told, the three of us had a pretty good time hanging out in the exam room at Childrens. We were very concerned, but LJ calmed our fears by being very cuddly and curious. He practiced his baby signs with Jenn, played peek-a-boo and waved at every nurse and doctor that came by.

The Neurosurgeon said it was an "impressive fracture", starting just behind LJ's right ear and extending several inches. He even took the images to show his boss. (Apparently, a skull fracture can be "impressive" without being very serious, for a two year old. So that's good). Neurosurgeon checked LJ out and gave us the all clear around 8:30. The course of treatment for a minor skull fracture is to do nothing and let it heal, come back and see us in a month. By the time Jenn and LJ actually got to leave it was nearly 10 and I was out at the airport picking up the cousins.

I'm not sure what the moral of this story is, but we're all glad it ended well. It ended up being much ado about nothing, since there's no specific treatment other than time, but at least all of our questions are answered. Time to go have a fun weekend with the family.

Week Summary

So we have had a crazy week and it's not even over yet! First, LJ pulled some heavy, dining room furniture down onto his head. I know this is typical toddler, exploratory behavior but nonetheless alarming when we couldn't get him to sleep at all that night. Of course, it had to happen when Nate and I were out on a playdate, and I got that lovely call from the caregiver (The whole car-ride home Nate kept forgetting what that word 'lump' was...there's nothing like having an almost 5 year old around to lighten the air a bit) .  He wound up with a large hematoma in the temporal region of his head. Even though we waited several days closely observing him, I was sick with worry, administering acetaminophen, lots of cuddles and finally ended up taking him in for some x-rays to rule out fracture or any other serious brain injury. We are relieved to report they came out all clean.

We've been busy with our CSA farm share too. We canned a bunch of bread + butter pickles as well as some cornichon pickles.  I also baked this Peach-Raspberry Crisp from the Barefoot Contessa. The tomatoes have been abundant and we've eaten them every which way!

Nate has even enjoyed some of the creations- surprisingly, one of which was Quinoa with Sauteed Summer Veggies. Nate also had art camp where he whipped up some of these diddies:)

The other really big news? We broke down and bought Noodles the iPad with Proloquo2go (P2Go).

Here's what a screen looks like versus what our big, clunky talker looks like.

We haven't set everything up yet but I am so excited for the possibilities. It is light years ahead of what the 4-way communication device was capable of doing.  The touch screen is a lot easier for Noodles to engage and I don't have to re-record all the vocabulary words anymore. Our speech therapists have both been learning about P2Go and they have both said how awesome this is going to be for kids in their school environment as well as their overall independence.

We haven't succeeded too much on the feeding front.  We are still only consuming 1 ounce at a meal and the obstinate side of LJ comes out each and every time its mealtime.  He tries to game the system by holding the food in his mouth until the positive reward is given, and then he immediately spits the food out.  One of the new techniques we have adapted is counting to ten slowly after he has received a spoonful. If he still hasn't swallowed he has to wait for the reward while we hold his jaw shut.  It's not pleasant but I think we are slowly getting there.

Hungry Hippos has been going well though.  LJ pretended to stir a drink with a pretzel rod and then he brought it up to his mouth on his own initiative.  He also imitated us playing with straws and he tried putting them in his mouth too.  We played with a pizza box and made pretend toppings. Then LJ did something that shocked us even more.  He pulled boxes of food out of some drawers and he did the baby sign for "help me". He wanted us to help him get the bag of ginger snap cookies out of the box! I think he enjoyed hearing the crinkling sound of the cellophane bag more than he was interested in the actual cookies. Nonetheless, he did try to feed me the cookies which I would never turn down!

Noodles rocked his Aqua Therapy this week. It was so nice to see him enjoying the therapy again.  He successfully made some baskets at the water hoop.  He also loosened up a lot throughout the session- his muscles were extremely tight at the beginning of the session and progressively got looser as we warmed up. The other thing our PT worked on was getting him to tilt his hips. She used a game of water splashing to entice him to bring his legs up and in, then kick straight out. So this week was the most interested he has ever been in food play and happiest he has been in the pool in a long time, hematoma and all. Go figure.

A Child's Letter

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much -- whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

- Author Unknown -

We're Back from the Beach

Home sweet home. We had a wonderful week. Back to reality.

Summer Love

I am trying hard not to think about vacation coming to an end.  We've had lots of good together time, sunshine and  great food; haven't caught up on sleep or reading but that's life I guess! Here's a little snapshot of what we've been up to:

Have a great weekend. We'll deal with the evil thought of unpacking and the dirty laundry some other time. But for now, we're off to to the beach again:)

Here Comes the Sun...a Family Vacation

A beach vacation sounds absolutely wonderful right now. Who better to share it with then a lot of my cousins and my aunt and uncle. I love the ocean. We visited Hilton Head last summer and were lucky enough to be invited back. There is nothing better than taking a break from reality, having a slower-paced week therapy-wise, and throwing in a little chaos of five families bunking in the same beach house! We are armed with our sunblock and that's what we've got planned. (that and basically eating tons all week long) Hope you have an exciting week.

Picture Perfect Picnic

Yes, that's a TWIZZLER and a Pretzel Stick in the above pix. LJ didn't like the texture of the pretzel stick, but he liked pretending to feed them to Mommy :) I also got to eat some plastic spaghetti! All good signs that he enjoyed playing and exploring.















And isn't our new friend, baby D, such a ham for the camera.  His smile was contagious!

A "Talker" and a "Walker"

LJ walking in his Pony gait trainer

Hopefully he'll be both a talker and a walker soon! LJ got his communication device which we're now calling his "talker"! LJ loves to hear my voice when he is able to press the corresponding buttons. And Nate has been extremely curious about it since it has a voice recorder (it can easily be erased by toddler hands & there doesn't seem to be anyway to "lock" the editing function), pictures and still has that new toy allure. Nate quickly advises us to quick! "Get Noodles' talker" when we can't figure out what he wants. I have had many trips to Staples to laminate wallet-size photos and restock my velcro fasteners for our binder of vocabulary. The "ACC" takes a lot of organization on my part since there's not a built-in vocabulary base- we have to make all of the little 2 x 3 icons that go on the communication device. (ACC stands for Augmentative Alternative Communication) It is also a little difficult for LJ to press whichever quadrant he is interested in. He clearly is "getting it" with the cause and effect, we just need to work with him on his motor control skills. On that front, at least, he is starting to clap his hands YAY and also does the baby sign "All Done".

Big, clunky four-way communicator (it can go all the way up to 16 images)

LJ also started a group-based therapy this week which is ironically called "Hungry Hippos". He meets with the therapist once a week through PIE already and she thought it would be a great way to have Noodles "play" with food without it being a threatening environment. So without any pressure, LJ and another little boy get to have a "picnic" on the FLOOR which is staged at the therapist's clinic, and we get to follow their lead. They watch each other explore and see food from a totally new perspective. The premise is that if the kids are hungry and not pressured, they might be more apt to taste things. There were watermelon cubes, pirate's booty, pirouette cookies and avocado to examine. I brought a blueberry muffin and my water bottle to the picnic and LJ promptly crumbled the muffin to pieces and then ground them into the picnic blanket.

Interestingly however, both boys had the same initial reaction. Though LJ favored feeding the food to an Elmo doll, neither  little "A" nor LJ was happy to stay on the picnic blanket. In their own way they both objected to the food and a crying chorus began. It should get easier each week as they will start to gain their trust in the situation & learn new behaviors; but for now, understandably, Lewis was protecting himself from something (oral aversion to all that medical intervention) that has always seemed to be a threat.

Nate enjoying the pool

In other news, LJ got a splint made for his right hand.  The splint is cocked at an upward angle to keep his wrist resting at an upward angle so his fingers can stay more relaxed. Wearing it on and off for several hours a day will in turn hopefully help improve his fine motor capabilities.  He did NOT like fireworks, but rather enjoyed the ice cubes from the beverage cooler.  Nate is having a wonderful summer and is so looking forward to visiting with his cousins over the rest of the summer.  We've had plenty of outdoor time with camp and the pool, and we finished out the day today with some arts and crafts projects (LJ got in on the finger painting action but seemed more enthusiastic about washing his hands afterward).  Music therapy continues to be a favorite, with LJ starting to vocalize some "A" sounds....Nate has also shown great interest in LJ's feeding therapy and asked to participate with the feeding today. He was allowed to feed his baby brother every other spoonful. He is also great at helping his baby brother interact with the world! Three words. Proud big brother!!

Up next week: post-opp appointment with the ENT and a new therapist will start coming to the house through early intervention- its an early childhood educator who will be working with us on helping LJ develop his receptive language, expressive language and engage in other activities that will boost his cognitive development.  Hopefully I will remember my camera for the picnic and will share them next week.

Happy Independence Day!

It's the Fourth of July tomorrow.  I'm predicting LJ is going to LOVE sparklers.  I hope you enjoy the 4th with friends and family....bbqs and fireworks...we sure will be!!

The Honey Jar

LJ's Honey Jar_OT with Cathy Fox 6/25/2010 from Jenn S on Vimeo.

Highlights of Our Ch-cha-cha-changes

It's almost been one week post-op.  Here are just some of the highlights from the past week. LJ's hearing is much improved. He loves to hear my phone ringing, maracas shaking, Daddy singing, and he's even rediscovered playing with some of his old toys. He's not so fond of Tango barking, Nate melting down or construction trucks beeping all day long. His throat is recovering from the adenoids nicely and spoon feeding sessions resumed yesterday. (they've been awesome today with Noodles being able to swallow every bit of the 2 tbs each meal) He's still partial to the sweet potatoes (which we've doctored with brown sugar) over the green bean purees but what kid wouldn't! LJ's breathing also sounds a lot clearer- no more junky sounding breathing. It's really so clear that I almost thought he wasn't breathing because he was so quiet the other day. One other milestone is that LJ can now wave hello and goodbye to people with such purpose!

We had a Father's Day BBQ to let our daddies know how much they are appreciated. ( I think Nate actually ate three helpings of this coffee cake with Haagen-Dazs ice cream...that's how much he loves his Daddy.) Oh, and our farm share has officially kicked off with all sorts of yummy zucchini, chard and blueberries.  I even made a delicious vinaigrette of garlic scapes, Dijon, honey, balsamic and olive oil for salads and dipping.  It's ridiculously good.

Nate has been out of school.  Summer camp starts next week so we've been enjoying what little unscheduled time we have at the pool.  He's so proud (as are we) that he learned to dunk his head underwater.  Nate has also participated twice now, in LJ's music therapy sessions- which might be more aptly named "dance parties". And we've played in the sandbox in our backyard.

LJ has pretty much been fussy and off-routine since surgery.  He's been partying at night- usually around 1am for about an hour or two. And that's after we finally get him to go down at about 9pm. Wake up time has been anywhere from 5:45am to 9am.  So by Monday we were all a little bit fried and in need of some zzz's. Didi came on Tuesday and gave a much-needed respite & giving Nate some requisite one-on-one time.  Nate has really come thru all this just beautifully but he was starting to get over it as in "Please pay attention to me now!!".

But, this is all to be expected.  When I think about how much LJ has been hearing just in the last week, he is undoubtedly on sensory-overload. On top of that, he LOVES his walker.  He can spend more than an hour in his Pony gait trainer...exploring...opening and shutting doors...opening kitchen cabinets...feng shuing the dining room...taking toys from the living room to his room for safekeeping...unrolling the toilet paper in the bathroom. LJ's 4-level communication board will be here in a few weeks. We'll see how it goes and then we may look into getting an Ipad with a special, augmentative communication application called a proloquo2go. It's been getting a lot of good reviews lately and it's much more portable than the average communication device but the downside is Early Intervention won't pay for it.

And we're also getting a new caregiver.  Sadly, our awesome caregiver had given her notice while we were in NJ.  She is getting married at the end of August and then going back to school fulltime. Nate cried when he heard about it:( Needless to say I've been busy interviewing and now training a new caregiver.  Things are moving right along. More soon!

We're All Ears

Ear tube surgery is a breeze. Adenoidectomies a little more difficult...and sitting in hospital waiting rooms even harder, but we just got home safe and sound. Surgery was at 8am and we were admitted to the PICU for the afternoon.  Luckily we were discharged and didn't have to stay overnight. Right now we're grateful for a little Tylenol with codeine (a devoted Didi, wonderful doctors and amazing nurses). Thank you for all your prayers of healing and strength. We're all looking forward to recovery and tomorrow is a new day filled with new adventures.

“Survival and thriving. These are the poles between which the moments of our lives are strung.  The balance is tenuous, and the outcome for each of us is different. Yet we mostly start with the same raw stuff: skin, a mother, food, shelter, breath, and each moment as it unfolds — one after the next — right now. From these all the intricacies of our lives are made. No matter who you are, your day is occupied with the small repetitive tasks of living,  and it’s in these moments that we’re shaped; even as we’re dreaming of other things.”

— Christina Rosalie, A Field Guide to Now

"Turning On" LJ's Ears

We've just started our official journey to the (better) hearing world. After many months of fluid in LJ's ears causing moderate hearing loss and many, many auditory tests, his ear tubes/adenoidectomy surgery is scheduled for this Thursday. We've been patiently waiting ever since the test at St Joe's confirmed that it should help. Our first surgery date was May 24th which was then postponed until June 1st.  A bunch of snafu's later, here we are.

I've oftentimes wondered how LJ's voice will sound and what it might feel like to hear him saying "Momma", "Daddy", "Doggy", "Nate" or "Mine!". He's been so quiet ever since he was a baby (except for a good pension for crying) and now we understand that its probably because he never had the reinforcement of hearing himself cooing. To him, everything has probably sounded like it's garbled underwater.

I hope that he gets to hear the whirl of a fire engine whooshing down the street...or mommy singing him a lullaby...or Nate telling his baby brother how much "he loves him more than all the people in the town". I hope this procedure is going to give him the ability to start communicating orally. We've been trying to teach LJ some baby sign language but he seems limited by his motor function. It has got to be so frustrating to live in a world where people do not understand you. That's just me projecting all my neurotic, mommy worries on him.  Still, it's also our dream that this surgery could greatly impact his ability to swallow easier (removing his adenoids should help) and possibly eat like a normal, healthy toddler. We even wonder how much his balance will be improved- will it help him to walk or even sit in a propped position? We are so nervous about what lies ahead but at the same time we have so much hope.