Out With the Old–In With the New (Kidney)

Today was the first day post-kidney transplant.  I would be lying to you if I told you it went smoothly.  Besides Marielle sharing our family secrets with random medical professionals, she struggled with lots of pain and anxiety.

Marielle is so confused due to medications, they she hasn’t fully realized that she has a new kidney.  She thinks we are trying to trick her.  Little does she know that not only did she get a new kidney, doctors had to remove both of her old kidneys (they were causing her high blood pressure) and do a bowel resection (prior liver transplant adhesions complicated access for the new kidney).

When she does believe us that she got her new kidney, she looks down at her stomach and becomes so upset.  Originally doctors were to make a small incision on her right side.  Instead, because of the complications, doctors had to do a very large incision from the bottom of her chest to her groin.  It was not what we had wanted, but it was necessary to save her life.

The next few days will continue to be touch and go.  Her kidney function is perfect.  It’s just managing all the medications, their side effects and the ongoing threat of organ rejection.

Please continue to keep my Sunshine Girl in your prayers.  But please, say a special prayer for the family who donated their child’s kidney to save my daughter’s life.  I will be forever grateful that this amazing family was able to make the decision in spite of their grief.

With friendship,

Lisa

WE GOT A CALL…THEY FOUND A KIDNEY FOR MY 15 YO DAUGHTER!!!

Yep!  But it wasn’t NY Presbyterian who called.  It was Children’s Hospital of Philadelphia who called just minutes ago to tell us they have a perfect match for my daughter, Marielle!  Surgery is at 3AM!

Please continue to keep my Sunshine Girl in your prayers!

UPDATE:  Marielle was taken into the operating room around 6:30AM EST.  The surgery can take anywhere from 6 to 10 hours.  Will update as soon as I hear anything.  Thanks for your continued prayers and support!  P.S. – Happy Birthday to my sister, Delia and brother, Joe!  LC

EVENING UPDATE:  Oh–things could not be going better!  Marielle came through her kidney transplant and is doing GREAT.  Surgeons removed both of her diseased kidneys and gave her a healthy young kidney in their place.  Everyone is thrilled!  She woke up and the first thing she said was, “When school ends, I’d like my lobster tail.”  ROTFL…that’s my girl!

I can’t tell you all how you’ve carried me when I was scared and unsure.  I keep thinking that it’s all a dream.  It feels so surreal–to finally reach the other side and preapre to start our new life.  Thank you.

Things will be critical over the next few days as we see how she responds to her new kidney.  I’ve been through transplant before and remember all too well the ups and downs we’ll be through.  But that’s ok…we’ll stay strong and keep at it.

I’ll update everyone after a good night’s rest (I’ve only been up about 40 hours now).  LC

 

All I Want for Christmas is a Kidney

Kidney Plush – When URINE Love by I Heart Guts

All I want for Christmas is a kidney for my 15-year-old daughter.  I don’t want any fancy sewing machines, big diamonds, or two front teeth.  I’m not the only mother wishing for a kidney.

Just when we thought it was ok to breathe for a moment.  We received the news that my daughter’s kidney transplant has been canceled.  Mr. Diva’s dear friend (and my daughter’s kidney donor) flew in from Las Vegas to New York City last week and went through all of the living donor kidney evaluation tests.

Doctors noticed he had high sugar levels.  They were puzzled as his original sugar test he took in Las Vegas was fine.  Not to mention, every other test the doctors gave him here in NYC came back normal (kidney scan, EKG, complete blood work, etc.).  So doctors tested his sugar a 3rd time and determined he is pre-diabetic disqualifying him as a suitable kidney donor.  Although he can know be put on medicine to lower his sugar and prevent future diabetes, he is heartbroken as he so wanted to help save my daughter’s life. We will be forever grateful for his kindness.  He symbolizes true friendship.

We are all devastated.  Everyone thought it was a “done deal” as the doctors had already booked the operating room for January 2nd.  But all hope is not lost.  The transplant center told us they have an altruistic kidney donor who has been tested and is a perfect match for Marielle.

However, in order for Marielle to receive this altruistic donor’s kidney, someone from our family or friends needs to also donate to another in need of a kidney transplant in their Donor Exchange Program.  The hospital has performed a Three Way Kidney Swap and even a Four Way Kidney Swap.

Also, the transplant center wants to retest my siblings to compare their antibodies against Marielle’s again.  The doctors feel if it is only one antibody in question, they will consider doing plasmapherisis to Marielle’s blood.

Over the next few days, our family will discuss these two options and make a decision on what we feel would be best for Marielle.  We are hopeful we will come up with a solution.  Please continue to keep our Sunshine Girl in your prayers.

Wishing everyone a blessed holiday!

Design Your Own Ultimate Sewing Room Contest

C O N T E S T       H A S        E N D E D ! ! !

Can’t believe I forgot to mention this!  Have you entered the Fabric.com / Craft Stylish Ultimate Sewing Room Contest yet?  There’s over $7,000  in prizes!  Prizes include:

 

Fabric.com Shopping Card - Value – $1,500

Baby Lock Ellure Sewing Machine - Value – $2,499

Reliable Corporation IronMaven™ J490A - Value – $399

Reliable Corporation C81 – Vacuum & Up-Air Pressing Table - Value – $499

Fabulous Fit Dress Forms Pro Series® Misses Regular Form - Value – $687

Sylvia Sewing Cabinets Model 810 work table - Value – $1,099.95

American & Efird Mettler Thread 28 Spool Gift Pack- Value – $82.10

1-Year subscription to Threads magazine - Value – $32.95

Threads Fitting DVD Series - Value – $99.95

Threads Industry Insider Techniques Volume 1 & 2 - Value – $59.90

The Best of Threads DVD-ROM Volume 1 & 2 - Value – $99.90

Here’s the Official Rules.  Hurry–the contest end December 31, 2008!

Here are the two sewing room designs I entered:

Design Your Own Ultimate Sewing Room NOW!  Check out the sewing room gallery to see what others have created.  Creating a sewing room online is so simply—really.  Go do it now!  You never know if you’ll be one of the winners, KWIM?

CPSIA – What Children’s Clothing Designers and Manufacturers Need to Know

SEE UPDATE AT THE END OF THIS POST

ATTENTION EVERYONE

THIS IS IMPORTANT!

If you manufacture (design, sew, make, produce, create, paint, embellish, silkscreen, assemble, etc.) children’s products, this affects YOU!

As of February 10, 2009, you are required to produce a General Conformity Certificate (GCC) stating your products contain no more than 600 ppm lead.

As of August 14, 2009, you are required to have your products tested by a CPSC accredited lab stating your products contain no more than 300 ppm lead.  In addition, all products must have permanent tracking labels.

The Consumer Product Safety Improvement Act itself:  CPSIA

Here’s a great explanation of the new requirements: NSF.org

Even though the CPSIA affects everyone who makes products intended for children 12 and under, I’m going to focus primarily on children’s clothing manufacturing (because that’s what I do).

If children’s clothing manufacturers, big and small, go out of business, it will affect everyone.  If a children’s clothing manufacturer closes their doors, they will no longer need:

• pattern makers
• sewing contractors
• embroidery companies
• fabric cutters
• retail children’s clothing boutiques
• retail customers (consumers)
• fabric suppliers
• children’s clothing sales representatives
• sewing machine manufacturers
• children’s clothing trade magazines
• children’s clothing trade shows
• web site designers
• graphic artists
• printers (posters, stationery, signs, etc.)
• in-house staff (secretary, bookkeeper, seamstress)
• sample makers
• advertising companies
• public relations firms
• hangtag suppliers
• garment care tag suppliers
• elastic manufacturers
• button manufacturer
• metal snap manufacturers
• thread manufacturers
• zipper manufacturers
• silk screen companies
• bias tape manufacturers
• paper packaging companies
• trade show display companies
• freight companies
• import/export agencies
• federal and state tax agencies
• federal and state licensing agencies
• and hundreds of others

Join the Fashion-Incubator CPSIA Forum (it’s FREE).  Here’s where I get almost all my pertinent information about the new CPSIA regulations.

Sites focusing on this legislation and its ramifications:

Fashion-Incubator

National Bankruptcy Day

CPSIA Central Forum

Boutique Cafe

Apparel Search

The Smart Mama

In addition to lead testing, the CPSIA has new tracking label requirements.  It is explained clearly over here at Fashion-Incubator.  This new requirement would create a bookkeeping nightmare for many companies.  It would add layers of paperwork to document and track each and every item produced–not to mention the cost involved with implementing and maintaining these records.

There are only 15 23 CPSC Accredited Testing Labs in the US who test for lab.  Now would someone explain to me how 15 23 labs will be able to happen the amount of testing necessary to test ALL children’s clothing made here in the US by the deadline?  What about all the other types of children’s manufacturers?

Then there is the issue of testing costs for lead.  Let’s DO THE MATH.  For my boys’ clothing line, testing would cost approximately $11,000 per season times 2 seasons (Spring/Summer and Fall/Winter) equals $22,000!  As it stands now, the law requires children’s manufacturers to test finished batches of each SKU.  It doesn’t matter that you use the same fabric, buttons or other component throughout your clothing line.  If you are using the same fabric in 15 different styles, it still needs to be tested each time you manufacture a style, batch and different size.  That is simply cost-prohibitive for most children’s clothing manufacturers.

If you need XRF testing, contact Jennifer Taggert, Attorney and Environmental Engineer at http://www.thesmartmama.com/bg/.  Please note, XRF testing is only good for General Conformity Certificates (required February 10th).  YOU MUST have certified lab testing done by August 12, 2009.

Because of the thousands of letters from those in the children’s industry, the CPSC has responded and asked for comments.

The most important thing you can do right now is answer the CPSC’s Request for Comments on Mandatory 3rd Party Testing by January 30, 2009!  I encourage you to do this as soon as possible.

In response to the CPSC, the National Association of Manufacturers (NAM) CPSC Coalition sent the CPSC a Petition.  This petition seems to cover all my concerns with the new legislation.  NAM members include:

American Apparel & Footwear Association
Association of American Publishers
Book Manufacturers Institute, Inc.
Fashion Jewelry Trade Association
Juvenile Product Manufacturers Association
National Association of Manufacturers
National Association of Printing Ink Manufacturers
National Retail Federation
Retail Industry Leaders Association
Printing Industries of America
Specialty Graphic Imaging Association
Toy Industry Association

Corky & Company’s Letter to Congress in Support for NAM Petition

Z Recommends post about CPSC’s Request for Comments

The Stitchery post on NAM’s Petition

Other things you can do:

Email Congress (easy form sent directly to your representatives)

Sign the Petition

Vote to make this issue a priority to the President

Listen to Mark Riffey’s Business is Personal CPSIA Broadcast

Let’s hope everyone in the industry finds a way to ensure child safety, yet make mandatory testing and labeling feasible for all children’s manufacturers.

UPDATE:  The CPSC has issued exemptions for several types of material including UNDYED cotton, wool, silk, etc.  Only problem is most children’s clothing manufacturers use dyed, embellished or otherwise processed fabric.  So therefore, it really doesn’t help us.  Stay tuned…I’m hopeful the CPSC will be updating us soon.

With friendship,

Lisa Carroccio

Disclaimer:  All of the above post is opinion and not to be construed as legal advice.  In these matters, please seek the services of a professional.)

HOT Holiday SWAP

There’s a bunch of us girls who last year formed a book club, Girls Night In.  Except, we soon discovered we really didn’t read much.  Instead, we had more fun doing SWAPS.

For this year’s Holiday SWAP, the mission was to spell out the word HOT.  The SWAP needed to have 3 things in it:

• H – Handmade Item
• O – Ornament
• T – Thrift Item

Some time ago, I nicknamed Amy—Applique Amy™ (even though some of her friends call her Alphabet Amy…LOL).  Amy is the Queen of Applique.  Her business, Tote and Tee, has a neat selection of custom initial tees, totes and other goodies.  I was thrilled to receive my SWAP from her!

First up, a handmade item with my initial!

Front:

Back:

Next, a hot pink DIVA ornament!  Yes, I do already have one, but I have another place for it!

Lastly, Amy found the coolest sewing thimble at a thrift store.  At first you might think this is just a thimble.

But think again.  It’s a large Shot Glass!  ROTFL!

Thank you Amy!  What a bunch of great surprises!  And yes, I’ve already eaten the chocolate and caramel you included in the box!

Here Comes the Sun…

On Tuesday Marielle was transferred from our local ICU unit to NY Presbyterian’s ICU to battle an unexpected infection.  Doctors at our local hospital told us it was a life and death matter.  Talk about scary.  I was besides myself.  Thankfully after 4 days and lots of great care, Marielle beat the infection!

A big picture of a sun hung over my Sunshine Girl’s bed.  And the room was painted bright yellow—her favorite color (and my least favorite–which might have something to do with seeing the yellow jaundice in her eyes as an infant).

It was a difficult 4 days.  Difficult listening to the cry of another mother who’s child lost their battle.  Difficult to take the elevator ride down to the first floor with this mom, each of us knowing the other knew what happened and dealing with the silence.  I wanted so bad to wrap my arms around her and tell her anything that would ease her pain.  But there is nothing you can really say.  Nothing that would make sense.

One sees lots of things in a pediatric ICU.  Things I cannot tell you.  Things that would change you.  Things that would break your heart.  And I know all the while, my child is the lucky one today.  And she’s scared.  She’s old enough to know what is happening around her.  I wish I could shelter her from the fear and uncertainty of what lies ahead for her.

And I think of my old friend, Nobia, who’s son Cody is hospitalized in a Japanese ICU fighting for his life.  Sending lots of prayers for our Code Man.  Marielle is used to hospitals, but Cody is not.  I wish I could tell him not to be afraid.

Marielle’s kidney transplant has been rescheduled for January 2nd.  It will give her enough time to make sure she tests negative for infection 3 times before transplant (she’s already tested negative once).  So although the wait for her second chance at life will be a little longer, it will work out better for everyone involved.  Now if we can just keep her blood pressure under control until then…

On another note, before we left out local hospital, Marielle received hemodialysis as an inpatient.  The hemodialysis unit is PINK!  Not only are the walls pink, but the staff nurses wear pink scrubs! But I think what I liked best was Bob’s custom Nike sneakers which read “HEMOBOB” on the back of each sneaker!  Brave man to wear pink sneakers!

As a sewn product manufacturer, I think Nike’s customized NikeID sneakers are ingenious!  And at about $100 a pair, the price is right!

I’ll blog more tomorrow as I have a lot to say about the new CPSIA children’s products requirements….but until then, I’m calling it a night.  In the meantime, start reading all the information over at Fashion-Incubator.  They’ll be a quiz tomorrow.

Waiting is the Hardest Part

I am tired.  Very tired.  Marielle has been rushed to our local hospital by ambulance twice in the last 4 days.  Doctors are having trouble controlling her blood pressure and have admitted her to the hospital so they can adjust her medication.

In the meantime, the transplant hospital gave us the bad news that Marielle is slightly sensitized to her donor, my e-Bay friend.  Now normally, the doctors could do a procedure called plasmapheresis to remove the sensitized antibodies from Marielle’s blood and go ahead with the kidney transplant.  However, time has run out and it is no longer feasible to do plasmapheresis.

When I called my e-Bay friend to let her know, she was heartbroken.  And although she will not be Marielle’s donor, I will be forever grateful she came forward (even though she was petrified) to save my daughter’s life.  Talk about a true friend–there is no greater test of friendship.

So the transplant center continued testing possible donors and found one of my husband’s friends to be a match, too.  Final donor testing is being done as we speak.  The transplant center has booked the operating room and are planning to do the living donor kidney transplant the day after Christmas, December 26th–my deceased Grandmother’s birthday.

Nineteen days.  Just 19 days.  We just need our Sunshine Girl to hang on for 19 more days to receive the gift of a new life.  I know my girl can do it.  I’ve witnessed her strength so many times over the years.

It’s OK to Laugh

Whoops!  I forgot to post this last night…

Under Pressure

Only home from the hospital for a mere 72 hours and things at the Diva household are back to normal…well, normal for us at least.

Yesterday morning started out with a big scare.  Marielle has struggled with high blood pressure for months since her kidneys started failing.  But now we have a new problem…intermittent low blood pressure…ugh!  She woke up Saturday morning with a blood pressure of 90/50–a big difference from the 180/120 a few days ago.  And low blood pressure is just as dangerous as high blood pressure.

Trying to get a doctor on the phone on Black Friday is like trying to find the door buster deal (my Pink Dyson vacuum at Target), KWIM?  And when we did, the doctor suggested I take Marielle to the local emergency room.  But Marielle begged me to wait–so I filled her up with caffeine and salt.  Then an hour later, she was back to normal.

Well, that was until today.  Now she’s running high blood pressures and we are crossing our fingers that we can get through the next 48 hours without a trip to the hospital.

And So It Is Christmas and Look What You’ve Done…

I “borrowed” my daughter’s girlfriends last night to help me get the 32 boxes of Christmas decorations out of the attic.  Karen aka Latte Lady reminded me there is no law which says you must use all your decorations.  Umm Karen, don’t you know it’s all about EXCESS?  My daughter reminds me our household is partly responsible for global warming.  She has a point.  It just seems silly not to display everything as I’ve spent years making and collection my holiday treasures.

Exhausted and sore, we all enjoyed a yummy checkerboard cake from Pasticceria Bruno–true bliss!

I will spend the next week in a Christmas decorating frenzy.  So much to do and so little time.  Oh why, oh why do I do this to myself?

Those Where The Days My Friend

 

Little Jedi was promised a new PlayStation 2 video game by Mr. Diva™ which comes with a microphone.  When I showed Joey how we used a regular hairbrush as a microphone when we were kids, he looked at me strange.  And we didn’t need a Dance Revolution mat to dance–we just danced, right?  Kids!  Whatever happened to imagination?

Anyway I just wanted everyone to know it’s ok to laugh even though my world has been turned upside down.  I find laughter to be a great stress reliever.  Most days things are so serious.  Every waking moment doesn’t need to be devastating or sorrowful.  So please, if you see me, don’t look sad.  Instead, tell me about your crazy family or some mischief you’ve gotten yourself into.

With friendship,

Lisa