Coping With Laryngomalacia, Inc. HONORED AS 2016 TOP-RATED NONPROFIT

For Immediate Release:
Coping With Laryngomalacia, Inc. HONORED AS 2016 TOP-RATED NONPROFIT 

GreatNonprofits.org Award is based on Positive Online Reviews

Port Monmouth, New Jersey (March 24. 2016) –Coping With Laryngomalacia, Inc. announced today that it has been honored with a prestigious 2016 Top-Rated Award by GreatNonprofits, the leading provider of user reviews about nonprofit organizations.

“We are excited to be named a Top-Rated 2016 Nonprofit,” says Stephanie Hueston, Coping With Laryngomalacia, Inc.'s Founder & President. We are proud of our accomplishments this year, including our very popular Breathe Easy Care Package Program. Since the start of the year, we have sent over 25 care packages from Texas to Australia.The care packages are a symbol of hope to our families. They are weathering a very dark storm, I know because I have been there. I hope that they find comfort in knowing they are not alone."

 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, Jennifer wrote, “I was so thankful to find Coping with LM after my daughter's diagnosis. I learned so much about her condition and knew what to ask her doctors. I am thankful to know we are not alone in dealing with this.”

Hueston's daughter Seraphina-age 6- assembling care packages for her fellow Pint-Sized Powerhouses'.

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’ve been added to GreatNonprofits #GivingTuesday Guide—an interactive guide to top nonprofits throughout the years. 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.”

#LuTheLamb has been traveling the world providing support, love and smiles to his Pint-Sized Powerhouses'.  

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. 

Supporters painted their nails light blue for laryngomalacia on World #AirwayDefectsDay, July 10, 2015.

About Coping With Laryngomalacia, Inc. 
Coping With Laryngomalacia, Inc.'s mission is to  provide support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia. Coping With Laryngomalacia, Inc. offers 24/7 online support, educational resources, worldwide programs, local meet-ups and more. Supporters can visit CopingWithLM.org for more information on laryngomalacia and how to help.
 
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 GreatNonprofits.org for more information.

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

Together We Can Move Moutains

When Seraphina was born (six years ago) our family was thrown into a world of unknown. Up until her birth, we had no reason to think she would not be okay. So when our newborn was born-blue, breathing with a stridor and having significant retractions, we were shocked, lost and in need of support and education. It took five long weeks before we were able to finally get a diagnosis- laryngomalacia. This common, begin, condition was slowly killing our daughter and emergency airway surgery was needed. We spent the next two years living in and out of the hospital (New Jersey to Pennsylvania). Long nights in PICU, showering at the Ronald McDonald House and piles of medical bills became our new norm.

Throughout our journey with LM, I made a promise to myself- I would dedicate my life to helping others who have walked the same journey. I would do whatever I could to make sure no mother has to sit in ICU, watching her baby breathe and think, "I wish I had someone to talk to."

Coping With Laryngomalacia, Inc. is a 501 (c) 3 nonprofit organization, all donations- monetary or goods- are tax deducible. Everyday, CWL provides support, strength and education for families who are coping with airway defects such as LM because of it's generous donors. As an award winning, 100% volunteer organization, donors can feel confident in supporting such an important cause. 

 

Seraphina at age four months old recovering from airway surgery then at age six, thriving!

 

Want to help?

First, share this post- your share may be the reason why a concerned mother makes an appointment with an Ear, Nose, Throat doctor to see why her baby is breathing so oddly.

Second, follow Coping With Laryngomalacia, Inc. on Facebook, Instagram and Pinterest so you can stay up to date with how your donation is making a difference.

Third, read this (http://tinyurl.com/gvmsrpw) blog post on different ways you can help- from making a secure, tax deductible donation online (http://tinyurl.com/phnrrpa) to starting a blanket drive within your community, this post will inspire you and your friends to make a difference.

Lastly, know the symptoms. The most common symptom of laryngomalacia is stridor- noisy breathing. Difficulty feeding, poor weight gain, reflux, apnea and blue spells are also signs the baby needs medical attention. Most symptoms are present at birth and worsen with the following weeks.

Thank you for taking the time to read this and supporting a cause so close to my heart. Together, we can move mountains.

~Stephanie Hueston, CWL Founder & President.

CopingWithLM.org

CopingWithLM@yahoo.com

Penny's Journey With Laryngomalacia

Written by: Naomi, Penny's Mom.
 

When we started on this journey little over a year ago I didn't know just how hard it was going to be. I became numb from it all because it was the only way to cope with everything that was happening.

I fought to be seen by the hospital because I knew something wasn't right and I knew it wasn't mild laryngomalacia and that Gaviscon (reflux medication) wouldn't fix this problem like the doctor said it would.

 

Penny with her Breathe Easy Care Package blanket and hospital gown.

 

I'd turn away and my precious little baby would be gray and lifeless. Fast asleep as if she'd passed away. I'd hold her in my arms and rub her to wake her up, she'd gasp and be back with us again. It was the scariest time of my entire life. Hoping that each time she would

come around yet fearing that she wouldn't with each time it happened. 

The first time the doctors attached her to the monitors, I sat staring at the numbers. Terrified each time they dropped and the alarms would sound. I've never felt so alone as I did watching those monitors.

Feeding became torturous for both her and I. Each bottle I made up, knowing she'd gag and struggle, forcing her with each mouthful so she would stay strong. Pushing her till she'd had enough but still pushing her more because a mother is meant to be able to feed her baby. To nourish them. It's a normal, natural thing to be able to feed your baby yet I couldn't, she couldn't anymore.

 

Penny, in the hospital.

 

After so many hospital visits we were told she needed surgery. I was terrified yet relieved they where going to help her get better. 

She was only 8 weeks old when this was decided. When everyone else was enjoying there new babies I was searching desperately for reassurance that she would be okay.

Researching everything because I didn't understand all the big words they where using at the time. 

She started to give up and slept all day. Only waking for small feeds then sleeping again. In the end I was feeding her tiny amounts with a syringe and that's when I couldn't do it any longer and she couldn't cope any longer being forced to feed. She was tired out with it all.

The hospital decided to tube feed her. This was all foreign to me. 

It was so hard seeing her pinned down and tubed. Each time she screamed and it was a totally different scream than you ever hear your baby doing. It was heart wrenching. 

Surgery day came and it was like no other. Handing your baby over to anesthesiologist. Terrified that she would be OK. I'm not religious but my god did I pray that day. Pray that my beautiful baby girl would stay strong and fight and by god she did me proud that day. She's a fighter, my Penny.

When I was taken to her in recovery I couldn't even hear words that anyone was saying to me. They where speaking to me but i couldn't comprehend the information

they where telling me. All I could focus on was her and her screams of confusion and pain. Her chest was making an awful sound and she was struggling so needed oxygen. I held her in my arms tightly and never wanted to let go again. 

After a rough night she recovered really well but still struggled with feeding for a few months afterwards.  I didn't care how she was fed anymore as long as she was fed. 

She did all of her 'firsts' in hospital. First smile, first time she sat up, rolled, her first tooth. Even her first taste of food.  Instead of the excitement I sat and longed to be home as a family again. We missed Christmas and birthdays, I missed my eldest daughter incredibly. I was torn in half.

It was a hard journey getting her off the tube feeds. Starving her to make her hungry so she would eat. She was scared of people near her when she was eating because of all the tube changes. She wanted to be left alone and so would you wouldn't you after all she'd been through. But she did it and she became tube free. She absolutely loves food now. 

You would never be able to tell she was tube fed now. She made me excited just watching her. I longed to be able to spoon feed her but she just wanted to be left to it. 

After a few weeks she eventually let me and I felt like a real mammy again. I could feed my own baby again!

Penny, enjoying lunch!

We've still had reflux issues but she is getting there, she is strong and she is a brave baby. She is the toughest baby I know and on days where I don't feel strong I look at her and she makes everything perfect. 

She still struggles at night and can't settle and has a terrible tracheal tug but one day she will be completely over all this. I know this because she can do anything if she got through the past year and I certainly couldn't have got through this last year without her.

 

 

Your Baby Has Laryngomalacia, Now What?

Has your baby just been diagnosed with laryngomalacia? Welcome, glad you found us. You are probably feeling very overwhelmed, confused and scared. Not really sure how to even pronounce laryngomalacia let alone know where to begin. The doctor may have told you your baby has mild-moderate laryngomalacia and you are now on the "watch & wait" course of treatment. He may have ordered further testing such as a chest and neck X-ray, a sleep study or maybe even prescribed acid reflux medication. Your baby may be having difficulty feeding, every ounce is a battle. You are unable to find good information how to properly nurse a baby with an airway defect. Maybe your baby has been turning blue and stops breathing, you are now headed into the hospital for surgery. You are exhausted and in desperate need of support, strength and education. You have come to the right place, we will be here for you every step breath of the way. 

~Stephanie Hueston, CWL Founder & President CopingWithLM@yahoo.com, Contributor to The Mighty.

What is laryngomalacia?

Laryngomalacia, or “floppy voice box,” is an infantile condition where the larynx (voice box) does not fully develop which causes the immature cartilage of the upper larynx to collapse upon inhalation. LM results in partial airway obstruction, typically causing a specific high-pitched squeaking noise upon inhalation, which is referred to as stridor. This ultimately causes an airway obstruction which is the reason for the cyanosis.The part above the vocal cords called the supraglottic larynx is tightly curled, with a short band holding the epiglottis, cartilage shield in the front, tightly to the mobile cartilage in the back of the larynx, or the arytenoids. These bands are known as the aryepiglottic folds which create the precise movement that opens and closes the vocal cords for phonation, or sound. The shortened aryepiglottic folds cause the epiglottis to be curled on itself. This is known as "omega shaped" epiglottis in laryngomalacia. Some infants have feeding difficulties related to this problem. Rarely, children will have significant life threatening airway obstruction. The vast majority, however, will only have stridor without other more serious symptoms.
​
Time is the most common treatment in more than 99% of infant cases. In more severe cases, surgery may be necessary. A supraglottoplasty involves cutting the aryepiglottic folds to let the supraglottic airway spring open. Treatment of gastroesophageal reflux disease, or GERD, can also help in the treatment of laryngomalacia. GERD treatment is effective because gastric contents can cause the back part of the larynx to swell and collapse even further into the airway. In some very rare cases, a temporary tracheostomy may be necessary to maintain an airway to give the child time to grow.* Learn more here.

I am looking for a recommendation for a good Ear, Nose, Throat Doctor. 
Do you have any?
Yes, you can view our top-rated ENT's here.

My baby has his/her first appointment with the Ear, Nose, Throat doctor in the near future. What questions should I ask?
We suggest printing out our free What To Ask Your ENT resource page, found here.

What are some common tests and procedures prescribed for babies with moderate to severe laryngomalacia?
From bronchoscope to a sleep study. We have compiled a list of common tests and procedures so you can understand and better educated yourself along your journey, found here.

When is surgery needed? 

Surgery is the treatment of choice if your child's condition is severe.
Symptoms that signal the need for surgery include:

•     Life-threatening apneas (stoppages of breathing)
•     Significant blue spells
•     Failure to gain weight with feeding
•     Significant chest and neck retractions
•     Need for extra oxygen to breathe
• Heart or lung issues related to your child's inability to get enough oxygen 

Do all babies with Laryngomalacia need surgery?
No, only 5% of all babies diagnosed with laryngomalacia will need surgery. Surgery should only be preformed to help treat life threatening LM. 

My baby needs surgery, can you help?
We would love to send your baby a care package. You can apply here.  

Are your programs available worldwide?
Yes, our programs are always free of charge and available worldwide. You can apply for our programs here.

I am looking for an organic thickener to thicken my baby's bottles. 
Do you recommend one?
Before changing your baby's feeding routine, please consult his/her doctor. We do, however, recommend Gelmix Thickener.  

My baby is having difficulty feeding. Do you have any resources that can help?
You can find more support, strength and education on laryngomalacia related feeding difficulties here for breastfeeding, here for bottle and formula feeding, here for reflux and here for tube feeding. 

My baby has severe laryngomalacia and needs a tracheotomy tube. Do you have any additional resources? 

Although rare, some  babies will need a tracheotomy tube (trach) to help him/her breathe. ​We have partnered with Moms of Trach Babies to help provide you with continued support, strength and education.

​

My baby needs to sleep on an incline, do you recommend any safe sleeping products to help?
Before changing your baby's sleeping routine please consult his/her doctor. We do, however, recommend the Fisher-Price Rock N Play Sleeper  and the Chibebe Snuggle Pod (Australia families only). 

What are some natural remedies I can try to help my baby breathe easier?
Before changing your baby's treatment plan please consult his/her doctor. We do, however, recommend using nasal saline spray, a cool mist humidifier (like this one) and sleeping on an incline.  

I am interested in wearing my baby. Which carrier do you recommend? 
Our Founder & President Stephanie Hueston is an Ergobaby affiliate and has been babywearing her laryngomalacia babies for 5+ years. She would love to talk to you about the benefits of babywearing! 

I am exhausted from not sleeping. Should I let my baby Cry-It-Out?
We are strongly against the Cry-It-Out Method of sleep training. Crying infants experience an increase in heart rate, body temperature and blood pressure. Crying also swells the airway, making the symptoms of LM worse. We strongly support the Wait-It-Out Method of sleep learning. You can read more about it here.  

Every time I bring my baby out in public, people make comments about my baby's noisy breathing (stridor). What should I do?
Although laryngomalacia is considered "common" most people have never heard of it. They hear the noisy breathing (stridor) and assume your baby is fighting a contagious illness. We understand how frustrating this can be but we encourage you to take this opportunity to educate the public on what laryngomalacia is. You may pass out our informative brochure (found here), refer them to our website (CopingWithLM.org) or show them this video.  
We also recommend our medical alert car seat/stroller sign, found here. 

 


My baby has severe laryngomalacia, should I contact my local first aid squad and let them know? 
Yes, contact your local First Aid Squad or EMS providing agency and inform them that a member of your household has laryngomalacia. The squad or agency will then ensure that the EMTs in your area will be made aware of your residence and the possibility of laryngomalacia complications in their response area. Also, in the event of an emergency, be prepared to briefly inform the responding emergency personnel as to what laryngomalacia is, and its resulting complications. Sometimes the fire department or a police officer will arrive before an ambulance and will have only basic knowledge of first aid; so it's important for you to be well informed and ready to help them help you. You can read more about emergency preparedness here.

Is there a laryngomalacia awareness day? 
Yes! #AirwayDefectsDay is July 10, 2016. We encourage all of our supporters to paint their nails light blue for laryngomalacia!

Is Coping With Laryngomalacia, Inc. on social media?
You can follow us on Facebook, Instagram and Pinterest. Be sure to use #LuTheLamb in all your social media posts!  


I would like to host a Malacia MeetUp, how do I begin?
That sounds great! Please Email us at  CopingWithLM@yahoo.com to learn more about hosting a Malacia MeetUp near you.

I want to connect with other parents but I do not want my posts to show up in my friends news feed. Is there an online support group just for parents?
Yes, you may join our closed support group here. 

I would like to share my child's journey with others. Are you accepting blog submissions?
Yes, we are always accepting blog submissions for our blog. We ask that submissions be kept to a 850 word maximum, are fully edited and keep with #TheGoodAlwaysFollowsTheBad tone. Pictures are welcome! You may submit your story to CopingWithLM@yahoo.com please include your name, address and a 3-5 sentence bio about yourself. 

Malacia Mom Megan with her son Evan.

Coping With Laryngomalacia, Inc. has positively impacted my life. How can I give back?

We are happy to hear we helped you cope with laryngomalacia! There are a handful of ways you can give back, each one is always needed and greatly appreciated!

• You can make a tax deductible donation here. 
• Share your experience with CWL on our Great Nonprofits page, found here.
• Donate items to our Breathe Easy Care Package Program, wishlist found here.
  

#LuTheLamb Giveaway: And the winner is...

And the winner is, entry #6!

 

Congrats Nicole, check your Email for more details on how to claim your prize.

 

Thanks to everyone who entered, Happy New Year!

The Good Will Come

Almost six years ago I was forcefully introduced to the world of life threatening laryngomalacia. Since only 5% of babies who are diagnosed with laryngomalacia, will be diagnosed with life threatening laryngomalacia, I had a very hard time finding outside support and information. I was alone and lost in my journey. Unable to connect with other parents, unable to see that the good really does follow the bad.

 

pictured: Seraphina, age 5, putting together care packages for 

her fellow laryngomalacia friends.

 

Somehow, life went on... in between all the hospital stays, airway surgery, oxygen tanks and those long, long nights I slept with my hand on her chest- feeling every breath. Those nights turned into days, then into weeks then months and before I knew it, I was singing Happy Birthday to my baby- on her 5th birthday. She survived. I survived. We survived.

I am now at a place in my journey where I can see the good. I witness the good, everyday. No longer is my baby hooked to an apnea monitor, no longer does she turn blue, no longer does she choke while feeding.

Our days are filled with cookie baking, reading Little House On The Prairie and pottery class.

If you are struggling to see the good, please know it WILL come. The sun will shine again.

Coping With Laryngomalacia, Inc. is here for you, every step of the way.

Stay strong and breathe easy,

Stephanie Hueston

CWL Founder & President

CopingWithLM.org

Remember You Are Never Alone

"When you hear the noisy breathing, remember we heard that too, When your concerns fall upon deaf doctors ears, remember we felt that too, When you are told your Child has laryngomalacia, Remember you are never alone. We are in this struggle together. When you are scared because your child can't get their breath, We have been there too. The beeps hounding you from the monitors from the fragile baby you want to protect. We can cope if we all cope together. We can do this if they can do this. Can't we? The moment they tell you your baby needs surgery, That you must hand them over and trust them with something, someone so precious. The fear, You are not alone, we felt that too."-Malacia Mom Noami