Tuesday, December 23, 2014

Looking Back At 2014



Take a look back at 2014 with us!
Thank you to all of our volunteers, donors and supporters!



Monday, December 1, 2014

CWL Is On The Radio!

BIG thank you's to Fun1071 and our long time volunteer Emilly for helping us promote our 
3rd Annual Craft & Vendor Show!

Be sure to listen in this week to hear our commercial!

Friday, November 28, 2014

3rd Annual Craft & Vendor Show: Sunday Dec 7th



25+ local vendors, FREE pictures with Santa provided by Lisa Liebeck Photography, face painting by Party Starters Face Painting , a special holiday performance by Essential Elements Dance Studio and more!

FREE admission, FREE parking! 
Bring the whole family!
 
SUNDAY DEC 7 11-3pm

RSVP here:
https://www.facebook.com/events/301321516708171/?source=1

Hosted by: Coping With Laryngomalacia, Inc.
a local nonprofit that helps babies with airway defects. Visit CopingWithLM.org for more info.

Friday, November 21, 2014

Fundraiser In Progress, Your Support Is Needed!


Scentsy Fragrance Online Fundraiser
Nov 1-Dec 7, 2014

25% of your purchase will go to CWL, 
so we can continue to do what we do! 

SHOP NOW:
(click Coping With LM under Open Parties at the top of the webpage)
https://ashnelson.scentsy.us/?partyId=260068514


thanks for your support!

Thursday, November 20, 2014

Bravelets Is Giving Double This #GivingTuesday!


Mark your calendar! 

This year for Giving Tuesday,
 Bravelets is GIVING DOUBLE!! 

For each item purchased on Tuesday, December 2nd 

Bravelets will donate $20 instead of $10 
to Coping With Laryngomalacia, Inc.

SHOP NOW.


 *must use the Coping With LM, Inc. Bravelet page link in order for CWL to receive the donation.*

Tuesday, November 18, 2014

Shop Shutterfly And Help Babies With Infant Airway Defects!

 
We are proud to announce our partnership with Shutterfly!
Shop with Shutterfly or one of their sister sites and 
15% of your purchase will go directly to CWL!

Use this link:
http://copingwithlm.shutterflystorefront.com/
 
*this is an ongoing fundraising effort so please save and  share with your friends & family!*
 
Thank you for your support! 

Wednesday, November 12, 2014

Give Back This Holiday Season





With the holidays quickly approaching, we invite all of our families, 
donors and volunteers to shop for a cause!

Shop our Zazzle Online Shop and a portion of your purchase will go directly to CWL.
Shop now: http://www.zazzle.com/copingwithlm

Shop our Official Online Shop and 100% of your purchase will go to CWL.
Shop now: http://www.copingwithlm.org/#!shop/cp9t

Shop with Amazon Smile and 5% of your purchase will go to CWL.
Shop now: http://tinyurl.com/qjhn9n5

Shop with Bravelets and $10 from every bracelet/necklace sold will go to CWL.
Shop now: https://bravelets.com/bravepage/breathe-easy-coping-with-lm-inc

*thank you for your support!*

graphic design by Lisa Liebeck Photography

Sunday, November 9, 2014

Hat Donations Needed!

 
Coping With LM, Inc. is in great need handmade hats 
(size 6-24 months, boy/girl colors) 
 
If you would like to help, donations can be mailed to:
Coping With LM, Inc.
Donations
PO Box 313
Port Monmouth NJ 07758
USA

Please be sure to include your name and 
mailing address so we can properly thank you!
 
Don't sew but still want to support the cause?


Sunday, November 2, 2014

Pint-Sized Powerhouse Maverick's Journey

 Back in May Maverick was 8 weeks old and diagnosed with LM. They did a scope but couldn't see much because of his severe reflux. So a month later they re did the scope after his meds were adjusted. It showed severe LM. We were always concerned about his breathing because he would pause and would take forever to catch his breath. I took numerous videos and took him to his pediatrician too many times to count. 


I stayed up all night listening to him struggle to breathe there were so many times I had to pick him up to take a breath. So ENT decided to do a Supraglottoplasty asap. On July 2, 2014 he was scheduled for surgery. They had a tough time tubing for the surgery. The doctor then came out and said everything went great. They would let us see him as soon as he starts waking up. It was he longest 30 minutes of my life.

Finally they called us back and I got to hold my sweet boy, but then I noticed he was starting to have a nose bleed. The nurse took him from me and put him over her shoulder to lay him down then blood started pouring out of his little nose and mouth. Within seconds there was about 20 nurses and doctors surrounding my little boy. All my husband and I could do was just watch in horror as our little guy was struggling. It took them an hour and a half to stop the bleed. As soon as the doctor was prepping to take him back to the OR he stopped. It was the longest night of my life. He was so uncomfortable. The next day was far from easy the added swelling and what they believe  is airway obstruction caused him to quit breathing for them 3 times. He would get upset and wouldn't be able to catch his breath and would go limp and blue. They put a neck brace on him to keep his tiny jaw from falling back and closing off the airway it worked. We were seconds away from getting a trach.


He would obstruct in his sleep and would drop his oxygen level way down into the 20s and 40s. They started him on oxygen and positioning him right and it has worked wonders. Along with 4 breathing treatments.


We are now in Late October early November and we are still on a pulse ox and oxygen during sleep car seats and when I can't sit and listen to him. We hope to have him off everything by this spring. But it all depends on our little hero. We go for a sleep study in January this will be his third. He's been doing amazing and we are so proud of him.  Those were the scariest moments of my life and it took me this long to be able to tell you our story.



I can't ever thank Coping With LM, Inc. enough. 
You give me the strength knowing I'm not the only one.
-Maverick's Mommy , Audrey

Tuesday, October 21, 2014

Coping With LM, Inc. Receives The 2014 Top-Rated Nonprofit Award!

For Immediate Release:
top rated NP.jpg

Coping With Laryngomalacia, Inc. HONORED AS 2014 TOP-RATED NONPROFIT
GreatNonprofits.org Award is based on Positive Online Reviews

Port Monmouth, New Jersey (September 24, 2014) –Coping With Laryngomalacia, Inc. announced today that it has been honored with a prestigious 2014 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.
“We are excited to be named a Top-Rated 2014 Nonprofit,” says Stephanie Hueston, CWL Founder & President. "We are proud of our accomplishments this year including,  our very successful 2nd Annual Co-Ed Softball Tournament and Fundraiser which was held on June 28th in Clarksville Missouri. Jared Cook from the St. Louis Rams donated his time for the event, he took pictures with our families and signed autographs. In July, Alex and Ani of Red Bank, New Jersey partnered with us for an in-store fundraiser. We were blown away by our communities support! Thanks to a very successful fundraising season in 2014, we have been able to send close to 100 care packages to babies with airway defects. Most recently, we have sent care packages to the Netherlands, England and the Isle of Man. Starting next month, we will include handmade hospital gowns in our care packages. We hope the hospital gowns bring comfort to our families, a small reminder that they are not alone while walking this journey."

The Top-Rated Nonprofit award was based on the large number of positive reviews that Coping With Laryngomalacia, Inc. received – reviews written by volunteers, donors and clients. People posted their personal experience with the nonprofit. For example, one person wrote, "My son was born with LM and it turned our world upside down. CWL was there every step of the way with support. We are thankful for all they do for LM babies and LM families. They made an unimaginable event in life a little more bearable. Thank you CWL!"

While the Top-Rated Awards run through the end of October, Coping With Laryngomalacia, Inc. was part of the inaugural group to qualify for the year. In addition, they been added to GreatNonprofits #GivingTuesday Guide—an interactive guide of the top nonprofits throughout the year. Look for this near the holidays.

“Savvy donors want to see the impact of their donations more than ever,” said Perla Ni, CEO of GreatNonprofits, “People with direct experience with Coping With Laryngomalacia, Inc. have voted that the organization is making a real difference.”

Being on the Top-Rated list gives donors and volunteers more confidence that this is a credible organization. The reviews by volunteers, clients and other donors show the on-the-ground results of this nonprofit. This award is a form of recognition by the community.


About Coping With Laryngomalacia, Inc.
Coping With Laryngomalacia, Inc. (an all volunteer organization) is the first 501 (c) 3 nonprofit organization in the USA and in the world that  provides support, strength and education for families coping with infant airway defects.
Visit CopingWithLM.org for more information.

About GreatNonprofits
GreatNonprofits is the leading site for donors and volunteers to find reviews and ratings of nonprofits. Reviews on the site influence 30 million donation decisions a year. Visit www.greatnonprofits.org for more information.

Media Contact
CWL Founder & President, Stephanie Hueston. CopingWithLM@yahoo.com

Read reviews and share your story here.







Thursday, October 16, 2014

Handmade Hospital Gowns Are Now Included In Care Packages

Handmade hospital gowns made by: The Mended Heart via Etsy.com


Thanks to our amazing donors and successful fundraisers, we are now able to include handmade hospital gowns in our Breathe Easy Care Packages!
Currently, we have size 0-6 months in stock. 
We will be stocking larger sizes in the near future.

We hope these hospital gowns offer a sense of comfort to our families and their Pint-Sized Powerhouses'... a small reminder, you are not alone <3

Apply your Pint-Sized Powerhouse for our care package program now.
DONATE to this program now.

Tuesday, September 30, 2014

You Will Get Through This




To the mother who is sitting in the hospital tonight, watching her baby breathe...you will get through this.
To the mother who is new to the world of infant airway defects...you will get through this.

To the mother who was awoken to the sound of an apnea alarm...you will get through this.

To the mother who spent all day fighting with the insurance company... you will get through this.

To the mother who just heard the words, "your baby needs surgery"...you will get through this.

To the mother who tried for over an hour to feed her baby...you will get through this.

To the mother who is pregnant and fears of this happening again...you will get through this.

To the mother who remains strong when everyone expects her to be weak... we are here for you, we applaud you.



CopingWithLM.org


Thursday, August 7, 2014

THANK YOU To Our Donors!

Donation from Blankie Depot of Keyport, New Jersey 8/4/14


Through the course of four and half years, CWL has sent hundreds of Breathe Easy Care Packages all through out the USA, Canada, South Africa, Australia, Ireland, England, Finland and the Isle of Man- to name a few. EVERY care package has been given at no cost to the receiving family- thanks to our amazing donors! Each care package contains a handmade blanket, handmade hat, Lu The Laryngmalacia Lamb, Socks 4 Surgery socks and a Mary Kay pampering bag (for the Supermom). Care packages are sent to families whose Pint-Sized Powerhouses' are scheduled to have airway surgery (a supraglottoplasty), comprehensive sleep study, tracheotomy tube surgery, scope in the OR and/or prolonged hospitalization due to complications of an airway defect. These care packages are more than just a Get Well Gift. They are full of Hope. Full of comfort. Full of love. They are a  constant reminder, you are not alone.

Still...after four years and over 300 donations, I get choked up looking at all the talent, time and pure love that goes into making these blankets and hats.

Do our donors actually know how appreciated their work is?
Do they know where their donations go?
Do they know who their donations help?

I would like to introduce some our Pint-Sized Powerhouses' that YOU have helped.....

Pint-Sized Powerhouse Mason. Mason is comforted by his father and blanket post airway surgery.



Pint-Sized Powerhouse Renee, recovering from airway surgery.
Pint-Sized Powerhouse Logan and his blanket during his sleep study.
Pint-Sized Powerhouse Harry recovering from airway surgery all the way in the United Kingdom.
Pint-Sized Powerhouse Brooks recovering from airway surgery in Alabama.
Pint-Sized Powerhouse Sophia recovering from airway surgery in ICU.
Pint-Sized Powerhouse Joel opening his Breathe Easy Care Package.
Pint-Sized Powerhouse Sophia during her sleep study.
Pint-Sized Powerhouse Kooper leaving the hospital with Lu right by his side!

Pint-Sized Powerhouse Maverick rocking his Socks 4 Surgery.


A donation is never "just a donation." It's never "not enough." 
It always has the potential to change a life. 

So THANK YOU donors...thank you for always believing in our mission, supporting our work and providing our amazing Pint-Sized Powerhouses' (and their families) 
with Hope, love and a hug! 

Breathe Easy, 
CWL Founder & Presdent 

To learn more about how YOU can help our Pint-Sized Powerhouses' go here.

To learn more about infant airway defects and what we do please visit CopingWithLM.org