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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 2-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!



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Imagine… A Bigger Prize Package!!

May 14, 2008

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So just a couple days into this benefit for Rhett and Parker, and we have some volunteers to make this even bigger! If you want to read about the details of the benefit and see my original four drawings, CLICK HERE.

First, the stunning, most fabulously wonderful Ursula of The Daily Drool has offered to add a gorgeous set of two of her lovely photograph prints, each in 5×7’s matted to an 8×10 size to the prize package: A monarch caterpillar and a lovely monarch butterfly…

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Next, the incredibly generous and talented Karen of Beyond Understanding has offered an autographed copy of her new novel, One Sister’s Song…

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And then there was Jacqui…

“Mommy, I wanta do artist drawings to help doze boys who’s very sick too.”

“Ok, why don’t you draw them each a picture and we’ll see if we can mail them to Rhett and Parker.”

“Nooooooooooooooooo!!!”

“No?”

“No! I needta do drawings in picher frames jess like you so you can put dem on da ‘pewter to help dem jess like yooooooooouuuuuu!”

“But, Jacqui…”

“It’s portent Mom!”

“But we don’t have any more picture frames…”

She handed me the phone with a grin, “Oh, dat’s easy… call Daddy an tell ‘im we need some more!”

I dialed while she giggled with glee and hopped up and down.

“OK,” the budding young artist declared while clapping her hands together like an authoritative production manager, “Now I need some paper.”

I handed her some paper off the computer printer. She scowled. “What?” I asked.

“Dat’s not gonna work! I need reely reel artist paper to be an artist, Mom!”

I cringed as she eyed my sketch pad. Then I sighed. What better use could there possibly be for a sheet of quality artist paper? None. I started to tear off a sheet as she shook her head and held up four fingers. Apparently she had a series in mind.

“I’m gonna do four pichers… jess like you!”

I handed over my sketch pad and she nearly burst with glee as she ran from the room to start her project. The rest of the day was spent making her drawings ‘just so’. The end result was this priceless set which I honestly am going to have a very hard time parting with…

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They are all 5×7’s and the first one is a kitty, the second is either a tiny unicorn and a flower or a regular sized unicorn and a giant flower — I’m not sure which (”If you don’t know I’m not gonna tell you, Mom!”), the third is a fish, and the fourth (my favorite) is a bunny. All lovingly hand-drawn by Jacqui.

She asked me tonight as I tucked her in, “Mom? Are doze boys very sick like me, wen I was in da hoz-pittle and couldn’t breave so very well?”

“Yes, Sweetie. Parker has a trach just like you did and Rhett has had a hard time breathing too.”

“Do you think my pichers will help pay da doctors so dey will be all bedder very soon?”

“Yes, Sweetie. I’m sure of it.” And she pulled the covers up with a giggle.

“I’m so very glad, Mommy.”

Me too. I’m so very glad for all of you who are stepping up to help these lovely families. Thank you!

Drawing Details:

At the end of the month, I will host a giveaway drawing with a winner randomly selected from the names of everyone who donates $5.00 to the Hands Helping Children Paypal account I have created to benefit these families. For every $5.00 you donate you will get one chance in the giveaway drawing to win the print set (and Ursula’s photograph set, Karen’s autographed novel, and Jacqui’s print set) — just send me an email or leave me a comment to let me know you’ve donated and how many entries you qualify for in the drawing. At the end of the month, the contents of the Paypal account will be split equally between Rhett and Parker’s families to help provide them with some much needed financial relief. To donate, click the button below, or send a Paypal payment to handshelpingchildren(at)gmail(dot)com.

Click button:

or CLICK HERE to donate.


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Imagine…

May 11, 2008

CF

Imagine a child. A beautiful Child. A child with sparkling eyes and a smile that lights up a room. A child loved by a young mother, a young father — as precious to them as the air they breathe. Can you see this child?

Imagine the color blue. Softly at first. So faint you’re not even really quite sure you see it. But it’s there. Sensed before it’s seen. Creeping, seeping into cherished features… lips, fingers, toes.

Now imagine the color white. Stark white. Chillingly sterile. Antiseptic whiteness enveloping this child — pulling them back from a horrific shade of blue in a tangle of wires, tubes, and beeping alarms.

Imagine the young mother weeping as she stands in this tight room of white, far from home, stroking the treasured child’s tiny head, unable to cradle the child in her arms as she longs to. Imagine the young father, holding her close, trying to be strong for all three of them. Imagine the anguish in their hearts as a hurried surgeon tells them the child needs surgery. A risky one. One in a long line of surgeries the child has already had to endure. One of many the child has yet to face.

Imagine long, restless, fitful nights. Nights the young mother spends holding the child’s hand. Praying for every breath, every heartbeat. Imagine the young father’s threadbare soul as he worries. Worries about his child’s pale little face, his exhausted wife, and the bills. The bills that haunt his family’s every waking thought.

Imagine…

Now imagine it’s you. Your child. Your husband. Your wife. Your family.

What would you do?

What would you wish for?

What would it mean to you if someone you had never met held out a hand to help you, your child, your family?

I can tell you from personal experience, exactly what it means. It means everything. Jacqui is here — a joyous, sparkling part of our lives because people cared. Some of the most thoughtful gestures came from people we didn’t even know. People we had never met. And I cannot begin to tell you how grateful I am for them. I know how important the little gestures are. Jacqui didn’t get where she is today from one person doing something huge. She got where she is through a whole community of caring — many, many, people doing countless little things, that when added all together changed her life, and ours.

Which is why my heart just breaks for Pam and her adorable little Rhett at Rhett’s Journey, and for Tammy and her precious little Parker, at Praying for Parker. They are amazing moms, with heroic families. And although my family lives on a relatively tight budget stretched thin with our own medical issues, I cannot just sit by and do nothing but watch as these other two families struggle. Since I don’t have an excess of income that I can draw from, I spent a lot of time trying to think of what I could do to help these two wonderful families. About a month ago, I realized I could certainly gift them with a little bit of my time and creativity. So here is what I came up with: A set of hand-drawn pen and ink stipple prints that I have been working on during spare moments here and there in my evenings…

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Each print is matted in a 5×7 wooden frame under glass. The drawings are all done by hand, and if you are not familiar with stipple drawings, they are composed entirely of tiny dots. The set is composed of a series of four hobby-horse variations: A zebra, an elephant, a giraffe and a lion. Each of them have button wheels threaded with red ribbon. The frames have both an easel back and a wall hook. I have sold similar sets on consignment for $75.00, but I rarely have time to invest in drawing these days.

At the end of the month, I will host a giveaway drawing with a winner randomly selected from the names of everyone who donates $5.00 to the Hands Helping Children Paypal account I have created to benefit these families. For every $5.00 you donate you will get one chance in the giveaway drawing to win the print set — just send me an email or leave me a comment to let me know you’ve donated and how many entries you qualify for in the drawing. At the end of the month, the contents of the Paypal account will be split equally between Rhett and Parker’s families to help provide them with some much needed financial relief. To donate, click the button below, or send a Paypal payment to handshelpingchildren(at)gmail(dot)com.

Click button:

or CLICK HERE to donate.

I have no idea how much this will bring in for them, but I figured it would likely be more than anything I could afford to do for them on my own. So I’m just going to say a little prayer here, and hope that this turns out well. They are both amazing and inspiring families and I hope each of you head over to read each of their stories.

If you want to help beyond participating in the giveaway drawing, I would love any help I could get in spreading the word on this fund-raiser. If you can link to this post, or stick a button in your sidebar… I’ll just be so grateful.

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Or maybe you would like to participate in some other fund-raisers for these lovely families:

Open a new account with Revolutionary Money Exchange from the link at Praying For Parker and Parker’s Medical Fund will receive $10.00 for each new account opened through his link. Plus you will be sent $25 from RME!

The Original Crackerjack Site is designing a lovely book for Parker’s upcoming surgery on May 16th: For a one dollar donation you can have your photo and website added to this book along with a drawing made especially in honor of your donation by the author’s lovely 2-year-old daughter Izabel. This fund-raiser just goes through this Wednesday, May 14th — so hurry!

The lovely Amy, of Bunny Rose Cottage is currently
donating the proceeds from her Etsy shop to Parker’s Medical Fund — go check it out!

The clever and creative Michelle, of Down Blogger, is coordinating a virtual craft fair benefit for Parker’s Medical Fund. If you’re the crafty sort — stop by! Michelle is currently seeking talent for this thoughtful effort.

Jessica from Raising Joey is generously donating 50% of her online sales from her bookstore from now through June 10th to Parker and Rhett’s families.

Michelle at Big Blueberry Eyes, is donating the proceeds from her Discovery Toy sales from April 15th through this Thursday, May 15th to Parker’s Medical Fund — better hurry on this one too!

So join in! So many ways to get involved — so many opportunities to show that you care. And you’ll be part of something special. Two priceless little lives and two beautiful families who will never forget that people like you cared enough to try and make a difference.


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This Is Why We Don’t Have Nice Things!!!

May 9, 2008

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Hmmm… I wonder who could have possibly done this? (Note to Miss Jacqui: Generally not the best move to sign the scene of the crime…)


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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…

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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…

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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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Wordless Wednesday — No One Understands The Tortured Soul Of An Artist…

May 7, 2008

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For More Wordless Wednesday Posts… CLICK HERE and HERE.


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