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, 

Stephanie Hueston

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

CWL Founder & President Stephanie's Annual Fundraiser Speech

"On January 18, 2010 our second daughter, Seraphina was born. Shortly after birth it was very obvious something was very wrong. She was blue and struggling to breathe. I was assured she was suffering from “normal newborn congestion” and told it would resolve within a few days.  As the days passed Seraphina’s health started deteriorating.She was now gasping for every breath and stopped breathing multiple times  a day.  I rushed Seraphina to the pediatrician's office and demanded she see a specialist. Something was wrong with my baby, but I didn’t know what.

Five weeks after Seraphina’s birth, she was diagnosed with laryngomalacia. Laryngomalacia is a congenital defect of the larynx. The tissues above the larynx are floppy and omega shaped ---when the infant breathes in, they collapse, creating an airway obstruction. For almost 99% of all cases, LM is common, benign condition--no further medical treatment is required after initial diagnosis.  And then there is a very small percentage of babies that are diagnosed with life threatening LM. Seraphina fell into this category. Her doctor  said on a scale of 1-10… Seraphina was 12, the worse case of LM he has ever seen.

Shortly after Seraphina’s diagnosis we learned she was also suffering from severe reflux, sleep apnea and left ventricular hypertrophy, also known as LVH of the heart which a life threatening within itself.

Later we would learn she had developed brain damage in the front left lobe of her brain from the lack of oxygen. Seraphina now battles Epilepsy.

On June 11, 2010 Seraphina went in for  a supraglottoplasty, airway surgery at JSUMC. During a supraglottoplasty, the surgeon cuts each side of the epiglottis tissue, creating more room in the airway for when the floppy larynx collapses. This surgery does not cure LM but helps improve the symptoms.  After surgery she was transferred to ICU where she was put on oxygen, steroids to keep her lungs open and morphine to ease the pain.

As the summer went on Seraphina started improving but I was falling apart. You see, no one can prepare you for something like this. To wake up in the middle of the night to your baby not breathing, to have to breathe for her until the paramedics arrive. It is overwhelming, scary and unnatural. I was in a very dark place and was trying my best to cope with a journey I thought I’d never have to walk.

How do I stay positive and still realistic? How do I remain strong and still acknowledge my fears? How do I cope?

Then I remembered advice my mother had always given my sister and I while growing up. She would say, in every situation in life--you have a choice. You always have a choice. Laryngomalacia wasn’t any different. I had a choice, I could let laryngomalacia destroy me or I could let it empower me.The choice was there, the choice was mine.

With the support of my family and friends I enrolled in Brookdale Community College’s Certification for Nonprofit Management Program that fall. Going to college terrified me beyond words, it was something I had never done. If Seraphina could survive a life threatening  airway defect , I could certainly do this.

Coping With Laryngoamalcia, Inc. 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 LM, T M and BM--all defects of the airway.  The CWL Team is made up of  100% of volunteers, who donate their time, support and passion to the cause daily, while many of them are coping with LM themselves.

CWL  offers several programs which are always free of charge to our families they include:

*Surgery Support Program

*Formula Assistance Program

*Chibebe Snuggle Pod Program

We also host

* local playdates and

*worldwide live online chats

*Feeding can be very big challenge for severe LM babies so we  offer a Feeding Difficulty Support Program, from breastfeeding to tube feeding, we offer resources to help educate and support everyone on their journey.

*and then we have our newest program, The Pint-Sized Powerhouse Grant Program where CWL helps families pay outstanding medical bills.

In addition to our programs, our website offers free education and resources for anyone who wants to learn more about LM, T M and BM.

To date, CWL has helped well over a thousand  families all throughout the USA, Canada, Europe, South Africa, Australia and most recently the Philippines and Finland.

This organization is constant proof that the good ALWAYS follows the bad---that in every situation you have a choice, you can let it destroy you or you can let it empower you.

Thank you everyone.  "

-Stephanie Hueston

CWL Founder & President

CopingWithLM.org

To view photos of the event click here.

(c) Coping With Laryngomalacia, Inc. All rights reserved.

Holiday Helpers Giveaway!

Do you still have some holiday shopping to get done?

Enter to win a $10.00 gift card to Babies R Us/ Toys R Us!

Happy Holidays from 

Coping With Laryngomalacia, Inc!

How to enter:

*comment on THIS blog post with your Name and Email address*

*LIKE the CWL Facebook page*

*this contest is open to EVERYONE*

*one winner will be picked via Random.org on 12/11/13*

*CWL will pay for shipping*

Growing Little Seeds

Photo by: Stephanie Hueston

 

we have lost sight of normal childhood behavior and growth. 

so concerned with numbers, percentiles and charts we forget everyone is different. 

we all GROW differently, in our own time. 

as a parent, it is our responsibility to make sure our little seeds have enough love, water & sun. we must shield them from the harsh winter storms then stand in awe 

as we watch them bloom into their own.. 

unlike any ever before, unlike any that will come.
how sad of a world it would be if every wild flower, every grain of the beach's sand, every autumn leaf, every snowflake was... the same.
so today, soak in the suns warm rays and breathe in the crisp fall air. 

stand beside your little seed and whisper "grow, grow, grow into you."  

 

-CWL Founder & President

Stephanie Hueston.

 

How LM Supermoms Are Chosen

"How LM Supermoms Are Chosen"

(adapted from a story by Erma Bombeck)

Did you ever wonder how LM Supermoms are chosen?

Somehow, I visualize God hovering over Earth, selecting his
instruments for propagation with great care and deliberation. As he
observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
profanity."
Finally, he passes a name to an angel and smiles.
"Give her a LM baby." The angel is curious. "Why this one, God?
She's so happy."
"Exactly," smiles God.
"Could I give a LM baby to a mother who knows no laughter? That
would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea
of self-pity and despair.
Once the shock and resentment wear off, she'll handle it.
I watched her today. She has that sense of self and independence so
rare and so necessary in a mother.
You see, the child I'm going to give her has a world of its own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has
just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally,
she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time,
she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--
ignorance, cruelty, prejudice--
and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in
the air.
God smiles. "A mirror will suffice."

Our Journey: Evan's Story

Our Journey

When I look at my little boy today it is difficult to believe that two and a half years of his life was pure torture…. torture for him as well as I. I watched my baby deteriorate in front of my eyes and all the while his doctor kept assuring me, ‘It is something viral. Let it run its course.’ Or, ‘Your son has asthma and reflux, he is going to cough.’ His doctor couldn’t have been more wrong. Here is our journey, in a very small nutshell.

My pregnancy was hard. When I say hard I mean I was incredibly sick, vomiting up to 30 times a day, suffering from Hyperemesis, Polyhydramnios and an incompetent cervix. These three things had never been a part of my vocabulary but I never knew how many more words that I would add to my vocabulary after my pregnancy and caring for my child. I was on bed rest for a total of almost 7 months and had a PIC line to administer fluids and IV Zofran so I could stay hydrated. At 23 weeks I went into active labor with my son and at that time I had about a millimeter of cervix left to protect my son from being born. I felt cheated. I had worked so hard doing everything I was told to protect my son and sustain a pregnancy and then I get hit with that? Thankfully, my contractions were stopped for the most part and I was released from the hospital after a week on strict bed rest. My doctor advised me, if I made it to 32 weeks it would be a miracle… yet we were shooting for 28 weeks. 28 weeks came, then 29, 30, 31, 32, (I was ecstatic and my doctor was amazed!) 33weeks, 34, 35, 36, 37, then 38 weeks. I was more proud of myself, my body and my unborn child for lasting that long! It worked, I kept him in! At 38 ½ weeks I was induced and ready to finally hold my precious baby. After 14 hours of labor I had progressed NONE. I couldn’t believe that I was begging my son to stay in and then he wouldn’t come out!? My doctor knew I was less than happy and scheduled a C-Section for that next Monday due to having way too much fluid and the potential of another failed induction. I went in to the hospital and checked in for my C-Section, knowing I was leaving with a baby this time. Twenty minutes after I was wheeled into the operating room I heard, ‘Happy birthday big boy!’ I lost it. I heard this squeal cry… the most amazing sound I have ever heard in my life. The doctor held him over the curtain and I couldn’t believe he was finally here. Evan Kingston was born at 7lbs 5oz, 19 ½ inches long and he was PERFECT. He had ten fingers, ten toes, he was active and alert. He had some trouble breastfeeding but I was assured that was fairly normal and to keep trying. I tried at the hospital and continued at home. No matter what I did, I had to stop. My production was gone and my post partum started at that time. Felling like a terrible mother was an understatement. 

Then, he started getting sick. Everything started with what seemed like a constant cold and problems feeding. Evan vomited at almost every feeding and when I say vomit, I don’t mean a little spit up I am talking about full blown projectile vomit. Evan was a frequent flyer at the pediatrician’s office but I was always assured that this was all normal and the mucousy cough, nasal discharge and wheezing was very likely due to me giving birth via C-Section. I was also assured it would all get better with time. When Evan was roughly four months old his pediatrician finally referred him to a Pediatric Pulmonologist. The visit to that doctor left me less than thrilled as my son was diagnosed with ‘asthma.’ Over the first year, Evan was diagnosed with asthma and GERD, (reflux) which was still not good enough for me. They were missing something…. I knew it. After many appointments to Evan’s pediatrician over the first year of his life, he ended up having a sweat test to determine whether he had Cystic Fibrosis. The wait for the test result was grueling. Thankfully, his sweat test came back negative for CF. I was very thankful for the answer but still confused because we still had no diagnosis and I was beginning to feel like maybe I really was just a, ‘crazy over-bearing first time mother.’

At 15 ½ months old, my mother gave me the name of a new pediatrician and I promptly made an appointment. I showed the doctor pictures and videos of Evan and his breathing, coughing and vomiting. She LISTENED and allowed me to cry and beg her to help my poor baby. She immediately knew something was very wrong. We were referred to a Pediatric Otolaryngologist (ENT doc) and anxiously awaited the appointment. The day came and I took my smiling, happy, sick baby into the office praying that we would finally get some answers. 30 minutes later I met my son’s angel…. Dr Adrian Latz of Children’s Mercy Hospital in Kansas City, MO. I call her my son’s angel because she truly saved my son’s life. Dr Latz listened to Evan’s medical history and did her usual question and answer for each new patient. She used a very small tube and inserted it into Evan’s nasal passage to get a better look at his throat and airway. That is when I heard that word for the first time… Laryngomalacia.

Evan was diagnosed with Laryngomalacia instantly after the scope and a plan of action was set forth. I have been asked many times how I felt in the moment of his diagnosis and I believe that to be a pretty loaded question. I felt angry, sad, scared, unprepared but most of all I felt VINDICATED. I was right all along. For 16 months my child was drowning in his own fluids. After all of the bronchitis, pneumonia, nasal discharge, vomiting, stridor etc, WHY did it take so long for someone to catch this?

A swallow study was scheduled, his diet was changed and we discussed the other ailments that can follow an LM diagnosis. I was assured we would know more after the swallow study and yes…. we learned more. His swallow study showed penetrations on every thickness of liquid until we reached honey. I was devastated for my child. I knew we had an even harder road ahead of us but felt very optimistic and ready to do whatever it took to get my child healthy. We started thickening all of his liquids and watching for any progress. Sadly, there wasn’t as much progress as we had hoped and we discussed the possibility of performing a Supraglottoplasty and also gel foam injections if he did in fact have a laryngeal cleft. We did another swallow study before making the decision of surgery and the result came back that his penetrations/aspirations were worse.

Less than a month before my son’s 2^nd birthday, I took my son into the hospital and signed the paperwork to allow his procedure to be performed. My mother and I played with him and took pictures while we waited for him to go back to the operating room to keep him from getting anxious. He was already used to hospitals so that wasn’t too big of a deal to him. When the nurse said it was time, I remember thinking in my mind, ‘Please God, guide his surgeons hands and heal my child. Please God, allow this procedure to change his life so he can have a more normal life.’ I handed my baby to the nurse and watched her walk away with him while he was screaming for me and crying…. I have never felt so guilty in my life. I chose this surgery for him, I put him in her arms, I signed the consent form and if something happens to him it is all on ME.

The doctor told us the surgery would take roughly an hour or two and she would come down after the surgery and let me know how it went. My mother and I waited in the room with all the other parents and grandparents waiting to find out the fate of their child. An hour and a half later his surgeon came down and took me into a conference room where she told me that Evan’s surgery went excellent. She said we had made the right choice because there is no way that his condition would have improved over time. She ended up doing the Supraglottoplasty and gel foam injections into Evan’s larynx due to the significant laryngeal cleft that he had. I was ELATED! My sweet boy will get better and I made the right choice! The surgeon said that Evan would be in recovery for about an hour and a half then be transported to the Pediatric Intensive Care Unit. I came out of the room to update my mom and we cried, hugged and thanked God for this opportunity for Evan. Then we waited. One hour went by…. And hour and a half went by and I started feeling strange. I finally got an update from the recovery room nurse who said, ‘Evan has had a hard time with the anesthesia. He is having dips in his oxygen and not waking up like we want him to. We ask parents to prepare themselves in times like these.’ I just hung up the phone. I was frozen. I couldn’t talk, I couldn’t speak, I couldn’t move. Then my brain flipped back on and I said to myself, ‘I will not prepare myself for ANYTHING, other than taking my child HOME.’

3 ½ hours after his surgery ended, we got the call to meet my son in the ‘reunion hallway.’ He was in this cage like crib and hooked up to monitors with tubes everywhere. I had never seen something like that and I had a lot of silent tears. The nurses had us follow behind his bed so that Evan didn’t see us and get agitated. We got to the room and he was still very groggy and wasn’t opening his eyes much in the first few minutes. I walked over to his bed once they got him settled, played with his sweaty hair, held his hand and kept telling him, ‘Mommy is here baby, Mommy is here. Everything is going to be okay, I promise you.’ The nurses asked if I wanted to hold him and I of course said YES! I got situated in the recliner in his room and they brought him over to me and placed him in my arms. I tried so hard to be strong but at the moment I lost it…. I cried and held him tight in my arms and couldn’t stop kissing his head and moving his hair around. Something came over me in that moment they put him in my arms- something similar to the first time he was EVER placed in my arms, except it felt better than that. I never though anything would feel better than holding my son for the first time yet, this was 100x better than that. I said out loud, ‘Thank you GOD, oh thank you GOD!’ Over and over and I have no idea how many times I said it. Everyone in the room was crying and my mother was able to get a few photos of the moment. 

 

Evan recovered well from the surgery and after a few months of weaning him off of his thickener…. He was done. No more thickener. No more reflux medication. No more limited diet. My son was finally freed from the unfair prison he had been locked into for so long. My son IS a fighter. My son survived.

Evan turns 4 years old in just three short weeks and I couldn’t be more optimistic about his health and future. He has grown out of every symptom of LM including recurrent croup which was the last on the list and that stopped about 6 months ago. I have to assure you parents that it WILL get better. Some get better faster while some take a little more time and more medical intervention. Some get diagnosed within days or weeks and some take 16 months or more, like my son. Every LM,TB or BM child is different but the one thing they all have in common is their will to fight. They are innocent and should never have to go through what they have but I can assure you, there IS a reason for everything. Although we may not know the reasons now, we will find out. We weren’t blessed with children who have perfect health but we were blessed with children that are perfect for US. God wont ever give us anything we cannot handle so take it as a fine compliment that God believes in US so much, that he entrusted us to care for his most special creations.

When I look at my little boy today, I think how blessed we are to have each other. I think of how my life and his life may not have gone as we could have ever imagined but we faced a demon and we beat it.

WE are fighters and HE is my pint sized powerhouse. 

 

Always counting my blessings…. Evan- I will hug you, cuddle you, kiss you, hold you and love you all the days of my life. I will never take a single second for granted. You fought to stay with me and I will continue to fight to keep you happy and healthy.

BREATHE EASY!

-Megan Crone

3rd Birthday Giveaway Winners!

Comment Number 10: Kacie Spink.

Comment Number 15: Katy Edgington

 

Comment Number 2: Stormye Wommack

THANK YOU EVERYONE WHO ENTERED!

 Kacie, Katy and Stormye, please check your Emails for details on how to claim your prize!