It's Not a Box

 

 

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!

Giddy Up Horsie: LJ's New Ride

LJ's new wheelchair arrived at long last (well, its actually an adapted stroller). It's got all the bells and whistles. Just missing the flames! (Feel free to send us any applicable decals you think his wheels might need) Here's a link to the manufacturer:

Kids F-A-S-T Chair

Noodles was fitted for it back in July and it was ordered early August, and voila. It finally arrived. 26 pounds was getting to be a lot for my poor back to carry. It had also gotten to be too much for the grandparents to hold him. The umbrella stroller we used when running errands and going to doctor appointments just wasn't cutting it for his proper pelvic positioning and support.

We tried out a Kimba and a Kid Kart at the recommendation of our physical and occupational therapists. I liked that they both had high/low bases that could additional bases could be purchased and the wheelchair base kept at home and one for the car.  The base didn't collapse very well and in the end I needed something that would be easier to fold up and put in the car & was slightly less bulky.

The F.A.S.T seat has dynamic shocks so that when LJ goes into his extension, it can move with him, allowing him to return to neutral position when he relaxes his body. The harness is all business and means I can be confident when he is riding around that he won't be leaning forward and tipping the chair over. The chair is one of the smaller bases on the market so it should be fairly easy for me to load and unload into the car. The other benefit is the handlebar can easily be adjusted to different heights depending on who will be pushing LJ. Here's to good seating!

Share With the Class....

So just a brief, little progress report.  I successfully switched out Noodle's ugly Hollister contraption on Sunday all BY MYSELF.  He was a perfect little gentleman and stayed relatively cooperative (ergo he didn't roll over onto his belly during the process!). His hole had closed up beautifully and the skin area around the tube has healed nicely.  I thought we weren't going to be friends again after I ripped the duoderm (a wound dressing that adhered to the skin) pad off his torso.  There really weren't any other options since soaking didn't help and considering I'm the only Mommy he's got.  I replaced it with the new version Mickey button and it has mostly worked out fine. We're still friends.

We had PT, OT and Feeding therapy today.  He totally had a ball at all of them. Below is a video of feeding with Jeni.  He was diggin' on a crumbled up fig newton! So was Tango, incidentally. At one point, LJ even brought the wooden spoon dipped in fig crumbs up to his mouth.  His gag reflex never kicked in.  Total awesomeness!  LJ's food picnic group, Hungry Hippos, resumed last week.  He quickly made a new, curly-headed friend, Oscar.  It was the perfect arrangement- Oscar loved, LOVED loved him some veggie straws so LJ pawned them off on him.  And what Oscar didn't like, Noodles surprisingly did. Such as wet, cold apple slices. Who knew? Mostly he just gummed them.

Stir It Up from Jenn S on Vimeo.

Below is also a snapshot of Cathy working her magic with him at Children's. He worked his tooshie off, but also seemed to be having fun.  The gait trainer she had him working in today is called an Up and Go.  It was a lot more challenging for him than his Pony because it requires him to get his "nose over his toes".  Whenever his center of gravity shifted, the gait trainer would shift his trunk support proportionately.  He dropped to the floor a couple of times to a seated position. He'll get the hang of it after a few more sessions.

Needless to say, he didn't complain about naptime as soon as we got home!!  Me either.  Nate's another story all together....

We're off to school tomorrow and then music therapy.  Fun times, fun times- of course that means that there are so many things it's hard to keep up with it all!!!

Good for My Health

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!!

Feeling Safe

“Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away.”

- Dinah Craik (1826-1887), English poet and novelist

First Day of School Pictures!

It's a Whole New World for LJ!!!

Emily and LJ at School

Nate and LJ at School (Take Note of LJ's Rockin' New Backpack:)

Nate's 1st Day at Pre-K

Teepee Picnic

Noodles NEEDED to have therapy in the teepee corner today.  So Nate's flashlight and random legos aside, Jeni and I moved in the new bumbo seat for LJ and had a food picnic right inside. I have no idea what's wrong with my camera, but again, I apologize for the poor image quality (and the screaming 5-year-old in the background).


Teepee Party (LJ Almost 2!)_9.13.2010 from Jenn S on Vimeo.

Hello?

An Open Letter to Special Needs Professionals

borrowed from:  www.thecrackandthelight.com

Hello?

New teacher, or therapist, or doctor? Is that you?

Oh hello...

I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see ... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don’t know the rules and that is for the best...

You might believe ... that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don’t really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Noggin News + Odds n Ends

We had a follow up visit today with the Neurosurgeon at Children's. All is well and Noodle's noggin is healing well. The displaced fracture will still take some time to heal, or fuse back together depending how you look at it, but as long as we don't see any increased eye tracking problems, vomiting or unusual sleepiness then we are good to go.  His hematoma is completely gone and that part of his head feels normal now. So no more Cat-scans or X-rays for quite a while I hope!

We are still trying to figure out what to do about the leaking Gtube button.  We spoke with one of our doctors who suggested that we shouldn't need to be treated as an inpatient to resolve it.  We're grateful for some creative, new ideas she gave us to discuss with the GI doctor so that we can hopefully shrink the hole and get the Mickey button to fit much more snug.  One is to put a smaller, temporary tube in place of the Mickey button, send us on our way, and let the hole shrink up. Once it gets smaller, we can insert a slightly larger Mickey and then it should be snug as a bug. The other option is entirely change out the brand on the button fitting to something called a CORFLO Cubby button. So we've made a doctor's appointment for later this week to sort that all out and we still have our second opinion appointment for two weeks from now.

In other news, we bought LJ a Child Rite seat. It's like a bumbo seat except it is made with a high back and wrap around support specifically for children with special needs (oh and he shouldn't outgrow it for at least 2 more years).

It allows him to sit on the floor and play independently without his extensor muscles forcing him to arch completely out of it. Noodle's trunk and neck are getting much, much stronger though and it is exciting to see him start to gain better control. Here are the before and afters of him trying to prop-sit on his own.

Toned Noodle

Nate and I had an adventure to Lake Tahoe ("Lake Taco" in Nate's jargon) this weekend. It was for a family celebration and Josh and Noodle held down the fort with Tango.  We had gorgeous weather and all went reasonably well.   The flight out there wasn't particularly easy- we had a six hour delay on our connecting flight. But when we finally arrived at our hotel, Nate was buzzing about the bear-crossing sign AND shooting star he had seen along the drive. And then of course his eyes lit up with excitement at the sight and sounds of the slot machines at our hotel's casino : ) Lots of fun was had by all.  The lake was beautiful but unfortunately I forgot my camera, so I apologize for the poor picture quality I captured on the cell phone.

Nanny and Nate at brunch

Nate and Cousin Asher on the Heavenly Mountain gondola

Preschool starts next week! LJ is going to go to the same preschool as Nate. It'll only be for three hours twice a week, but we're thrilled about the friends and experiences (and new music content D ) he'll gain.  It's LJ's first time in a social setting like this, he'll be the only child with special needs in his class, and we are all beaming in anticipation. He'll use his gait trainer to get to and from music, the bathroom and playground etc and the new child rite seat for circle time and free play. Either his caregiver, Emily, or I will accompany him throughout the year. Despite how hard it may be for me at times (it's hard to not make those comparisons when there are other able-bodied wee ones in the same room), it will be SO fun for Noodle. But in the meantime I've been preparing myself before going in. Can't wait to get into something that resembles a routine!!

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.