#AirwayDefectsDay: Encouraging Families Around The World To Raise Awareness

World Airway Defects Day is July 10, 2016. 

In addition to painting their nails light blue for laryngomalacia, a number of our families are stepping up and raising awareness for an airway defect many can not pronounce. 

In Australia: 

Mel says,  

"My husband's work (NSW Ambulance) is having a state wide awareness and fund-raiser. Morning teas/ awareness drives etc are being held from the 7-12th  of July."

 

Event Invite

In London:

Sally says, 

"We'll be in the Everlina London on 10th July, planned procedure 8th July. Will make sure as one of Londons largest hubs for ENT that #LuTheLamb is with us. Our consultant last time were were there was interested to know all about Coping With LM."

 

United States:

Crystal says, 

"Our son (Kane)'s first birthday is July 9, 2016 so we asked our family and friends to make a donation to Coping With LM in honor of Kane and his battle with laryngomalacia."

Kane at 11 months old

 

Megan says,

 "We will be painting our nails blue and hosting our 3rd Malacia Meet Up in Illinois."

Illinois Malacia Meet Up, 2015

 Megan says,
"My baby girl and I are painting our nails light blue and then we as a family, are wearing all light blue! I even got a light blue sling specially for the day!"

 

WHAT WILL YOU BE DOING ON WORLD AIRWAY DEFECTS DAY?

Comment below and be sure to use #AirwayDefectsDay in all of your social media posts! 

Learn more about laryngomalacia and how we help at CopingWithLM.org

Big Sister Raises Awareness After Brothers Airway Surgery

In honor of World Airway Defect Day on July 10, Big Sister Sofia (Greenacres FL) is raising money for Coping with Lanryngomalacia, Inc. with her Confetti For A Cause Project. In less than a month,  Sofia has raised over $500.00 for CWL- the true testament of a sisters love.

Carter, Sofia's brother, recently had surgery due to his Laryngomalacia. CWL helped Sofia's family during the process and Sofia is so excited to give back! Funds raised will be donated to CWL so that they can continue to help families during their LM journey! 

Sofia has put so much TLC into her 'confetti bracelets' (she even cut the confetti herself!! ). 

With each donation, Sofia will send you one of her special bracelets!

Sofia's wish is that everyone who has received a light blue confetti bracelet will wear their bracelet on July 10 (World Airway Defect Day) in celebration of her little brother! 

If you would like like a light blue confetti bracelet made by Sofia please click here.
You can also Email Sofia's Mom, Courtney at ensorc@yahoo.com

Most Loved Baby Gear Products For Babies With Laryngomalacia

Recently we asked our parents what baby gear products would they recommend for a baby with laryngomalacia. The following list consists of the most popular AND MOST LOVED products!

Need these products for your Pint-Sized Powerhouse? Consider shopping with Amazon Smile and choose Coping With Laryngomalacia, Inc. as your charity. A portion of each eligible purchase will go directly to our Breathe Easy Care Package Program. Thank you so much for your support!


1. Most Loved Incline Bed (USA): Fisher Price's Rock N Play
Jenna says, "My son slept in it from 3 months old until he got too mobile at 7 months old. That was the hardest period of time for his LM, and the only time he didn't have a constant stridor was in the Rock N Play. All LM babies are different, but it was the perfect solution for our little one."

source: Amazon.com

2. Most Loved Incline Bed (Australia): Chibebe Snuggle Pod
Australia based families can apply here for a Chibebe Snuggle Pod.
America based families will be able to apply soon.

source: Chibebe.com.au

3. Most Loved Bottle:  Philips Avent BPA Free Natural Bottles
Mallory says, " Avent worked really well. 3 different nipple flows to choose from and easy to cut to allow thickened liquids through"

source: Amazon.com

4. Most Loved Thickener: Gelmix Thickener
Olivia says, "Love Gelmix!!! The only thickener that doesn't get clumpy!"

source: Coping With LM, Inc.

5. Most Loved Baby Carrier: Tula Ergonomic Carrier
Jennifer says, "Our Tula has been through numerous hospital/Dr visits, several hospitalizations and 2 surgeries. Between flights back and fourth between islands to see specialist and surgeries we could not have done it without our Tula! Definitely a life saver! Carried my baby close when she needed it most and when I needed it most."

source: Amazon.com

6. Most Loved Sippy Cup: Munchkin Click Lock Flexi Straw Weighted Straw Trainer Cup
Tracy says. "It has a much smaller straw than other sippy cups so the flow is much slower. The straw also has a valve at the top unlike other straws, which allows the fluid to stop flowing immediately when the sucking stops. The straw is also weighted, so no matter what position he was in he could still get fluid."

source: Amazon.com

 


7. Most Loved Humidifier: Crane 
Stephanie says, "I have used this humidifier for over six years and love it! Very easy to clean and helps so much with the congestion that is associated with laryngomalacia"

source: Amazon.com

8. Most Loved Baby Soother: Babocush
Alana says, "It is amazing. Even my husband who was a big skeptic has gotten on board. Our 3 week old is my youngest, and it is extremely challenging to hold her upright for 30 minutes after eating (and she snacks a lot, so there is a lot of upright time) and tend to my two older ones who are both under 4. I attached it to our Mamaroo and when I have the swing going she relaxes immediately. Her breathing is even more quiet on the Babocush than she is when I hold her against my chest. She does have a strong preference for a steep incline though (flat didn't go so well - which is why we put it on the swing). We are two days in now and everything seems to be going great. She is relaxed and happy on it and I can better tend to my other children. So far very happy!"

source: Babocush.com

9. Most Loved Pacifier:  The First Years GumDrop Pacifier
Kristy says,  "My son would only take the Gumdrop Pacifier. They have a shorter nipple and the only thing he didn't gag on."

source: Amazon.com

10. Most Loved Car Seat Accessory:  Brica Koosh'N Infant Neck and Head Support
Tracy says, "Our son had to sleep sitting up and we always had to have a little something behind his neck to help his chin come up." 

source: Amazon.com

Donor Spotlight: Lisa Liebeck Photography & Grahic Design

Talented, professional and charitable. 

These words come to mind when working with Lisa from Lisa Liebeck Photography of Port Monmouth, New Jersey.  

You can find Lisa's artwork at The Junction Boutique in Belford, NJ

Lisa is a talented graphic designer and family photographer, offering services such as logo design and branding, holiday cards and family portraits- to name a few.

Shop small this Holiday Season and order your Holiday Cards from Lisa Liebeck Photography.

We are so thankful that Lisa donated her time and talent to our 2016 graphic design work!

Find Lisa on Facebook and on the web.

 

 

Usborne Books Online Fundraiser: Shop For A Cause!

Last weekend we partnered with Usborne Books for a fundraising event at Coping With LM HQ in New Jersey and guess what! The event was a HUGE success!

 

Since the fundraiser was so successful, we have extended the event so ALL of our supporters can join the fun!

Be sure to JOIN our Facebook Event and SHARE with your friends & family, the more the merrier!

HOW TO SHOP:

Click here  to shop, and as long as you see Coping With LM, you are good to order! 

UBAM ships anywhere in the US, as well as worldwide to APO's. If you are outside of the US, please be aware that you will have to have your order sent to Alycia Nolen and then shipped out at an additional shipping charge, that will be determined by the package size and weight. If you have any questions regarding this, please feel free to send Alycia a message! 

*This event will close on Sunday May 29, 2016*

Mother's Day Giveaway! (CLOSED)

Happy Mother's Day to all of our strong, beautiful and fearless Mothers! 

We applaud you for standing up, letting your voice be heard and trusting your instinct.

Now we want to treat YOU with a huge giveaway!

ONE random winner will receive:

• #LuThelamb stuffed animal
• Limited Edition Coping With LM Thirty-One tote bag 
• You First Journal by Lea Michele
• John Masters Organics Essential Travel Kit for normal hair
  HOW TO ENTER:
  1. Follow Coping With Laryngomalacia on Facebook
  2. Share THIS post on your Timeline
  3. Follow Coping With Laryngomalacia on Instagram 
  4. Comment below on this blog post
     (scroll down, do not comment on the Facebook/Instagram posts):
     -Your name
     -Email address
     -Location
     -Complete the following statement:
     I am a strong mother because...
     
     Terms:
     1. One random winner will be chosen on May 8, 2016 at 9pm EST via Random.org
     2. Winner will be contacted via Email provided
     3. Each mother may only enter once
     4. This giveaway is open worldwide
     5. This giveaway is free of charge to the winner, the winner is NOT responsible for shipping charges but may be subject to custom charges if the winner is international. 
     6. This giveaway is only open to mothers of babies with LM, TM and BM
     7. The winner will have 24 hours to respond to the Email providing her mailing address
     8. If the winner does not reply within 24 hours, a new winner will be chosen
     9. This giveaway is not sponsored by Facebook, Blogger, Thirty-One Gifts, John Masters Organics or Lea Michele.
     10. Happy Mother's Day and good luck!
  
  

You are not alone. We are here.

For many babies who receive the diagnosis of laryngomalacia it is simply noisy breathing. Usually no further medical treatment is required after the initial diagnosis. For their parents, laryngomalacia becomes a forgotten word as their baby reaches milestones, 

thrives and "out grows" the noisy breathing by his/her first birthday.
 

And then there is that very small group (1-5%) of babies who are diagnosed with life threatening laryngomalacia. Parents of these babies are thrown into a world of unknown.
They must cope with hospital stays, major airway surgery, other related medical conditions and lack of support, to name a few. Life is turned upside down all because of a congenital defect that was supposed to be common, benign...no big deal.

CWL Founder & President Stephanie Hueston with daughter Seraphina.

 

Parents of severe laryngomalacia babies often feel anger, fear, unsupported, overwhelmed and alone. Unable to connect with other severe LM parents because severe LM is so rare.
This is why Coping With Laryngomalacia, Inc. is here. To provide support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia.
 

Our goal is so no LM Supermom has to sit in ICU, 

watching her infant struggle to breathe and think,
 

I wish I had someone to talk too.
 

You are not alone. We are here.
 

I know how it feels to sit in ICU. To have to breathe for my baby. To wish for support. To be angry that my child had to be in the "worse case we've ever seen" category.

I know because I was there.
 

Though the journey has been difficult, life changing and oh so overwhelming... 

 I will tell you this...the good follows the bad. 

Always.

Breathe Easy, Stephanie Hueston CWL Founder & President
#LuTheLamb CopingWithLM.org
Carrier: Moby® Wrap