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This blog is really about our kids, Jacqui and Kyle:

Jacqui is a wonderfully energetic and opinionated five-year-old. She was born with a rare birth defect known as a lymphatic malformation (LM) and has been through a lot in her young life. She had a trach until she was a year old, had surgery in New York to remove her LM with world renowned surgeon, Dr. Milton Waner (at age three), and still has a G-tube. She is a bright sunny soul in spite of everything.

Kyle is a thoughtful, and slightly reserved 1-year-old with a magical giggle and a wise-looking smile. He is clever and charming and a bundle of pure joy.

Our goal as parents: To treasure every moment and to raise our children to be extraordinary individuals.

Welcome to an inside view of our world!



Finding Courage Through Sharing ~ Coming To You April 24, 2008!

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Picky Eater's Club ~ Coming To You May 8, 2008!

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Childlife's Singing In The Rain Award ~ Coming To You April, 2008!

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Picky Eaters Club — May 2008 Edition

May 8, 2008

Picky Eaters Club

For our first edition here, let’s introduce ourselves, and our picky eater (or eaters). Then in whatever format you choose, share one tip for a success you’ve had with your picky eater, or ask for tips for dealing one challenge that you’ve been facing with your picky eater.

I’ll try to include a tip both for the standard picky eater and for the picky eater with additional medical challenges in each of my posts. (For Picky Eater’s Club information click here.)

Hello there! Have a picky eater or two (or three…)? Well, join the club! I’m Michelle and I’ve got two of them, Jacqui is five, and Kyle just turned two. Jacqui, on top of being naturally picky, had a ton of early medical issues that further enhanced her picky-ness through sensory and food texture issues and the like. Kyle isn’t naturally picky, but he has severe reflux that we finally have pretty well controlled with medication. The reflux has caused him to balk at certain flavors and textures so I have some picky-ness issues with him too. Our house is just tons o’ fun!

I hear all the time from moms that they just can’t get their kiddos to eat, so I thought why not pool our experiences here and outsmart the little rascals! Here are my tips for the week, one for the standard picky eater and one for dealing with extra medical challenges:

My Eating Jar/Good Job Jar System…

EJ

Once I finally got Jacqui eating, I began looking for a way to get her to self-motivate during meals. It gets so tiring to sit there saying “take another bite… take another bite…” What I came up with is a pretty simple little system that cashes in on her fascination with piggy banks. I went to our local Dollar Tree store and picked up a duckie toothbrush holder, a wicker basket, three bags of craft gemstones and a larger jar with a stopper. Six dollars total.

The large jar is her ‘Good Job Jar’. She gets gemstones for doing things well: Keeping her room clean, making her bed, using polite words, putting her coat and shoes away when we first come home — that sort of thing. She loses stones for yelling, messing up her room, bickering with her brother, etc. When the jar is all full (takes her about three months on average) she gets a special outing of her choice. We’ve gone to a local amusement park, the beach, the aquarium. She’s currently saving to go to the zoo.

The little toothbrush holder jar is her ‘Eating Jar’. She gets a gemstone for each food item finished to a parent’s satisfaction and two gemstones for trying a new food for the first time. She gets three stones at the end of a meal if we don’t have to remind her to keep eating. No stones are ever taken out of the eating jar. When it is full she exchanges it for 30 minutes of computer time, a sheet of stickers, or some other reward we have agreed on. She typically fills up her ‘Eating Jar’ twice a week. We do have to frequently change the reward or she gets bored.

The other part of the system is a timer. If she is being particularly belligerent, a set amount of a type of food that should easily be able to be finished in five minutes is set aside on her plate. The timer is set for five minutes and if she doesn’t eat it before the timer goes off, she loses a stone out of the ‘Good Job Jar’ for not following directions. The timer is set for another five minutes and so on. It usually only takes one or two rounds of this to get her focused back on earning stones for the ‘Eating Jar’ instead of losing stones from the ‘Good Job Jar’.

This little trick along with some others I’ll share later have saved us a lot of mealtime headaches. Hope it can help someone else out as well — bottom line is never give up and keep looking for unique ways to motivate your child.

Dealing With Medical Related Eating Issues…

DW

So let’s begin at the beginning here. You’re a new mom, with a baby in the NICU on tube feedings. Maybe they’re a preemie, maybe they’re on a ventilator. Whatever the case, not every NICU is going to tell you how important it is to maintain your baby’s sucking reflex. So I’m going to tell you… if it is in any way an option, it’s super important to maintain your baby’s sucking reflex. If you can work on breastfeeding with your baby, do it. Even if your baby is on tube feedings, come in before feedings and work on breast feeding. Be aware that there are tons of aids for complications with breastfeeding such as Supplemental Nursing Systems that you can talk to a lactation consultant at the hospital about and get help with. If your baby needs to bottle feed but has special complications with a bottle there are specialized bottles such as the Haberman Feeder with adjustable flow rates.

If your baby cannot drink anything by mouth, it’s still important to work on maintaining your baby’s sucking reflex if you can. I know that there is a lot of negative info out there about pacifiers, but this is one situation where a pacifier becomes a very good thing. Particularly if your baby is on a ventilator. When Jacqui was on a ventilator for six weeks as an infant, I kept a pacifier going with her as much as I could while she was awake. Most hospitals actually stock pacifiers and the majority of hospitals stock the Soothie brand pacifiers. There are several nice things about these pacifiers: Babies who often refuse other pacifiers will frequently accept a Soothie, the hub of the Soothie can be cut with scissors to fit around a ventilator tube, and they can be ordered attached to cute little stuffed animals (like Jacqui’s old duckie pictured above) called Wubbanubs, which can help keep the pacifier in place for your baby when you are not able to be in the NICU.

Maintaining your baby’s sucking reflex sets you up for an easier time transitioning to oral feedings later. If the sucking reflex isn’t maintained and your baby isn’t given any positive oral experiences, they are at high risk for developing an oral aversions: Low or zero tolerance for anything in or near the mouth, which can make the transition to oral feeding extremely difficult. If at all possible, encourage your baby to take a pacifier during any bolus tube feedings to help your baby associate sucking with the sensation of his or her stomach filling during a feeding. If you are able to do this, it can make the transition to breastfeeding or bottle-feeding so much easier. Even if your child doesn’t eat by mouth until much later (Jacqui wasn’t off tube feedings until age four), making sure your baby has some positive oral experiences while in the NICU will make everything from brushing teeth to learning to eat that much easier. Nurture that sucking reflex any way you can, if you have the option.

What About You? What picky eater tips or questions do you have? I’m looking forward to hearing them!


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Get Ready…

April 18, 2008

CMCblogcarnival

Just a little reminder… It all starts next Thursday, so get those posts ready and see you here on the 24th!


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The Sun May Come Out… Tomorrow…

April 2, 2008

SH

Image Courtesy Istock Photo

We’re starting to see the clouds parting on this last CVS episode… little glimmers of Jacqui peeking through the fog now and then.

During one of her brief ‘awake times’ today, she mentioned that she might be interested in eating tomorrow…

“Mommy… I fink maybe I will like to eat a snack tomorrow.”

I peered down at the sleepy head in my lap and smiled. “Well, that would be great! What do you think you would like to have for a snack?”

She arched an eyebrow and gave me a fleeting glimpse of a sleepy dimple. “Hmmmm… how ‘bowwwwwwt… SUSHI!!”

“Sushi??” I was completely thunderstruck. The word ’sushi’ is never uttered at our house. We’re not sushi people. We’re not any kind of seafood people. Not even fish-stick people. Maybe a-tuna-sandwich-now-and-then people, but definitely not sushi people.

She flashed a toothy grin up at me and repeated, “SUSHI!”

“Do you even know what sushi is?”

A comical attempt at a serious scowl crinkled her brow as she answered, “Course I do. Itsa kinda not-cooked fishy. Probly reely slimy. Don’t worry, it won’t make me gag too much. Yummy!” She made a loud slurping noise for emphasis.

I just looked at her in stunned and bewildered silence.

“You’re ‘posed to squish your eyebrows all up like you’re mad and say, ‘Ha, ha. Very funny’ “.

I was completely lost. “What??”

She sighed in dramatic frustration. “I was bein’ sour-catty, Mom.”

I rubbed my temples trying to locate a fragment of the conversation that I could make sense out of. “You’re what?”

“Mooooom! Sour-catty… you know… it’s like a not-funny joke. Wen sumbuddy is bein’ sour-catty, you’re all-ays ‘posed to say, ‘Ha, ha. Very funny.’ Like dat. But only don’t laugh. Now you say it.’

“Sarcastic? You’re being sarcastic?? For crying out loud — you’re five…”

“Mom. Pay da tenshun. Say, ‘Ha, ha. Very funny.’ ”

“Ha, ha. Very funny.”

“Dat’s better. Sometimes you take a very long time to figger thins out, doncha?”

… Ha, ha. Very funny.


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Guardian Of My Sanity…

March 30, 2008

MB

A Peek At My Bookshelf…

I felt him standing there before I saw him. I looked up to find Ken paused in the doorway observing me with an arched eyebrow. “You have that look,” he commented in a reproving tone.

“What look?”

He rolled his eyes at my deliberate obtuseness. “That look. You need to get out of here.”

“Whatever do you mean? I’m fine.”

“Uh, huh. Take a look in the mirror. I’m doing fine. You? Not so much.”

“Thanks. Thanks a lot.”

“I didn’t mean it that way, you twit.”

I touched my thumb to my nose while wiggling my fingers and crossing my eyes in his general direction. He wasn’t impressed. Or amused.

“You. Out. Now. Go breathe some fresh air. Or at least go haunt one of your old bookstores for the afternoon.”

I protested because we had both been up much of the night with Jacqui due to her recent CVS episode, “You need some time to yourself too…”

“I told you I’m fine. You, on the other hand, are not. You’ve been hovering over Jacqui for weeks now and you can either walk yourself to the door for a change of scenery, or I’ll boot you there.”

There was no arguing. I had neither the energy or motivation to go out — which was precisely why I was being escorted to the door. “Okay, okay… I’m going.”

And so I went. I thought about serving my time by sitting out in the driveway in the driver’s seat of our car, but that thought only lasted about a minute as I balked with the notion of being told what to do. Then common sense took over. No point in being belligerent to my own detriment. I had car keys and an afternoon all to myself. The driveway would not be the most brilliant use of my time.

I pulled out of the driveway with the thought of heading to the local Barnes & Noble book store, but then my car did a funny thing… It turned a different direction. I stopped at the grocery store, picked up a loaf of out-dated bread and headed towards the park. I fed the ducks and geese and then leaned back into a park bench and watched the clouds. I went for a walk. I strolled bare-headed down a riverside path as hail pelted cherry blossoms from the trees in a fluttering blizzard of pink. I walked until my fingers grew numb and I laughed when a hummingbird dive-bombed my path as I returned to my car. Good to know I hadn’t forgotten how.

My car meandered past sleepy shops and I stopped when I saw the sign of an old bookstore. I stepped inside and could feel my eyes lighting up from within. A cluttered shop, jammed near floor to ceiling with books. Doesn’t get much better than that. I parked myself in a dusty corner with an armful of aging yet timeless treasures: A collection of Dickenson’s poems in an unassuming dark green cover with faded, yet ornate end papers, a tattered calf-skin volume of Longfellow’s poetry with the words, “To my darling Jenny ~ 1897″ written lovingly on the fly leaf, a small red leather pocket volume with worn gilded edges and no title that fell open to a someone’s long-ago favorite words penned by Keats, and an obscure little collection of Oscar Wilde’s fairy tales with the cover loved threadbare. I spent the rest of my rare afternoon with my finds, most of them too costly to enjoy beyond the afternoon. But what a lovely afternoon it was!

I returned home after trading my pocket change for the tiny copy of Wilde’s tales, grateful and rested. Grateful for hummingbirds, clouds, and cherry blossom blizzards. Grateful for timeworn books and introspective afternoons. Grateful to be sharing my life with Ken, my very best and truest friend. Like Wilde’s “The Happy Prince”, his heart is generous — his first thoughts for the welfare of his wife, for his children. The guardian of my sanity who sends me off for a a solitary afternoon of soul-mending with a smile and a wink at his expense. Because he knows I will do the same for him.


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Hot Water Bottle Cozies…

March 27, 2008

WB

HB5

HB6

One of the snuggly comforts of winter in our house are hot water bottles. I’m honestly surprised that so few people own them these days… I wouldn’t trade mine even if someone demanded it as ransom for one of the four pillows I insist on sleeping with (a source of much mocking in our house, but that’s another story). However, I am not taunted about my fondness for my hot water bottle… because when the temperature in our corner of the world drops, my feet turn into icebergs. I often joke and tell Ken that his marriage vows to me were to “love, honor, cherish, and warm thy feet for as long as we both shall live.” Ken doesn’t find this humorous in the slightest. Let’s just say he’s more than willing to pass the responsibility of “foot warmer” along to my hot water bottle.

Problem is, I like the water in mine REALLY hot. So it stays warm all night. So instead of wrapping it up in a flour-sack towel like I had for years, I finally decided to make a cozy for it last winter. And it was so simple! For the standard hot water bottle, I used a nice soft piece of flannel, and cut out two rectangles sightly wider and a few inches longer than the bottle. Then I sewed them right sides together, leaving the top open like a bag. After turning it, I hemmed the top edge, then turned it back inside out.

HB3

I then pinned a strip of flannel about 1 1/2 inches wide, flat around the circumference of the bag at the height the neck of the hot water bottle would be when placed in the bag. I sewed each edge of the strip to the inside of the bag so that there was about one inch between the parallel seams.

I turned it right side out again, then snipped two small holes in the front just through the first layer of fabric between the parallel seams to thread the draw-string ribbon through. You could be fancy here and sew button holes as your very first sewing step, but I didn’t bother… I’ve never been fond of sewing button holes and my ancient sewing machine has been less than cooperative in this task. My last step was to tape a length of ribbon to a short dowel and thread it through one hole, between the parallel seams and then out the other hole to form the drawstring. I also knotted the ends of the ribbon so they wouldn’t un-ravel. Voilà! Hot water bottle cozy and toasty warm winter feet!

HB2

I made a heart-shaped variation for my daughter Jacqui. She has a rare condition called Cyclic Vomiting Syndrome which results causes a lot of abdominal pain for her. A hot water bottle has been a real comforting item for her so we ’splurged’ on a heart shaped one from Victoria Trading Co.

She loves her heart bottle, but wasn’t so fond of the cover that it came with. I let her choose the material for making a new cover and she was torn between two fabrics, a soft flannel and a cotton princess crown print. So I got both and made her cover reversible. She loves that she can decide if hers is “soft” or “princess-y” as she says.

To make a reversible cover, follow the same first steps, cutting two sides from each fabric in the appropriate shape with the seam allowances and extra fabric for the top of the cozy. Sew each matching set of fabric right sides together leaving the top open like a bag. Turn one of the sets, leaving the other un-turned. Tuck the unturned bag inside the turned bag, smoothing it so the seams match up. Fold the top edges of each bag inward towards each other, pinning as you go. Sew the top edges together, close to the edge of the fabric.

HB5

Measure out where the neck of the hot water bottle will hit and then sew your two parallel seams just like with the single layer cozy, except this time you don’t need an extra strip of fabric because you already have two layers. Snip two holes in the front between the parallel seams and thread your drawstring ribbon, knotting the ends. Then turn the cozy to the reverse layer and snip two holes on the opposite side between the parallel lines for your drawstring for the reverse layer. Thread the ribbon drawstring, knot the ends and you are done!

HB1

For more Winter Bazaar ideas, visit Scribbit

Special thanks to Corey at Living and Loving Every Minute of It for inspiring me to finally start posting some of my half-done posts from my over-stuffed drafts folder!


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