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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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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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Moonstruck…

March 28, 2008

This post is from three weeks ago, before Jacqui’s last two CVS episodes hit. We were all still down with pneumonia and ear infections, but looking forward to a better week.

MS

It had been a long week. A long very long week and I was tired. As I walked through the living room picking up toys, a silver moonbeam glinted through the window. I curled up on the couch with a sigh. I lifted my face to the light and watched as darkened clouds clamored through tree branches below the curve of the moon. I wondered to myself how my lovely friend, Jo, would write such a moon in such a sky… and I closed my eyes as the weariness of the entire week washed over me. And then I heard it. A kitten-soft step.

A tiny hand slipped into mine and I caught the scent of lavender bubble bath as she leaned down to whisper into my ear, “It’sa crescent moon, Mommy… idn’t it ‘chanting?” And all at once, I couldn’t breathe. Didn’t dare. Letting the beauty of that moment hover and stretch… until it flitted away with a butterfly kiss on my cheek and a hop-skip-pirouette down the hall. A fairy giggle muffled by a blithesome bound into the softness of pillows and quilts.

I turned my face back to the moonlight as my heart sung within, “It is worth it… every minute… worth it all…”

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 - Thanks Corey!


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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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A Flower In The Rain…

March 26, 2008

RF1

Today wasn’t supposed to be like this. Not another storm so quickly on the heels of the last one. We were going to go to the library today… she wanted a book about flowers. She was laughing and giggling after breakfast, but as we slipped on her shoes to leave, that awful switch flipped. The light in her eyes snuffed out as a new CVS episode stormed through her… before the pink even had a chance to return to her cheeks from the last one.

So once again, I mingle my tears with the rain and pray that she will come back to me soon. As she slipped away into another week of sleep, she whispered with a faint teasing grin, “I fink dis means I get to sleep in your room ‘gain.” My little girl is so much braver than I…


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Gluten-Free Gems… Kiddo Approved GFCF Macaroni And ‘Cheese’

March 25, 2008

MC

I thought I would post this recipe because it is one of Jacqui’s favorites, and if the Picky Princess likes it, chances are, your kiddos will too. It is one of the recipes I reach for to entice her to eat again after one of her week-long CVS episodes. I have modified it from about three different recipes, but the original starting recipe was from Jessica Seinfeld’s book, Deceptively Delicious. I should note for new readers that I am well aware of the controversy around this book and I have discussed it in a past post: Gluten-Free Gems… Sweet Potato Pancakes. Despite the controversy, I have found it an incredibly useful book with great tasting recipes catered to a kid’s palate that are easy to prepare, nutritious, cost effective, and easy to convert to GFCF. And our family now has a GFCF Macaroni and Cheese recipe that Jacqui just loves. Hope it works well for your family too!

Kiddo Approved GFCF Macaroni And ‘Cheese’

8oz Tinkyada Macaroni Style Brown Rice Pasta

1/2 Cup Butternut Squash Puree

1/4 Cup Rice Milk

2 TBSP Dairy-Free Margarine

3 Slices American Style Tofutti Brand Soy Cheese

Note: Be very careful when selecting soy cheeses while on a casein-free diet. Many soy, rice and vegetable based cheese substitutes still contain casein in them, so ALWAYS read the label. Look for something that clearly states ‘Casein-Free’. Be aware that some cheese substitutes may also contain gluten, so be extremely careful choosing your cheese substitutes.

1/4 TSP Salt

Butternut Squash Puree:

The night before, prepare the butternut squash puree. Slice squash in half length-wise, scooping out the seeds and stringy pulp. Wrap each half in foil and bake at 400 degrees for one hour or until the ‘meat’ of the squash is soft. Scoop the baked squash from the rind, discard the rind and place the baked squash in food processor or blender. Blend until smooth, thin as needed with rice milk or water adding one tablespoon at a time until desired consistency is met. Measure out 1/2 cup of the puree and store in refrigerator for use in the morning. Store the rest of the puree in 1/2 cup increments inside labeled quart freezer bags in the freezer for future use.

Macaroni Pasta:

Measure out your pasta, and follow the package directions for preparation. Be aware that rice pastas take a little more than twice the cooking time of wheat-based pastas. So start your pasta boiling before beginning the sauce.

Macaroni Pasta:

Remove squash puree from refrigerator. (If you are using some from the freezer, either let it thaw in the fridge overnight the night before, or place the ziplock bag in a warm bowl of water - it will thaw in about 3-5 minutes).

Snip a corner of your bag of puree and squeeze contents into a large saucepan. Place on medium heat. Add salt, margerine and cheese slices, stirring until cheese is melted and smooth. Measure out rice milk and add slowly until you reach a nice creamy texture for your sauce. You may require more or less of the rice milk, depending on your preferences. Turn burner to ‘warm’ for the sauce until pasta finishes boiling.

Drain pasta, add a dash of salt if you like. If you also add about a tsp of dairy-free margarine, it will help keep the noodles from sticking to each other.

Place Pasta in a large bowl and pour sauce over pasta. Serve immediately. Leftovers can be refrigerated and re-heated, but just like the macaroni in that famous blue box, the sauce won’t be as creamy second time around. You can also make up a batch of the sauce and keep in the refrigerator for a few days to add over noodles prepared in smaller amounts. We do that at our house because Jacqui is the only one who needs the GFCF version. We make standard macaroni for the rest of the family because it is much less expensive and make up a small batch of the GFCF version for Jacqui. If you prepare it this way, you might have to add additional rice milk to thin the cheese sauce down once it has been refrigerated. It still tastes great and has lots of kid appeal. Hope it brings the same smiles to your house as it does to ours!


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