Coping With Laryngomalacia, Inc.

Happy New Year!

2012-01-03T18:28:00.000-08:00

Happy 2012 to all of our
supporters, donors, volunteers
and of course.. LM babies & families!
Everyone here at CWL wishes
you and your family a happy and healthy year!

We have a lot planned for 2012!

We have announced 2 of 3 BIG New Years Announcements for 2012!

1. CWL is proud and excited to offer the Chibebe Slumber Pod Donation Program to our Australian LM /TM/BM babies! To learn more about this program, Chibebe and how to apply for this program please visit our Programs tab.

2. This holiday season, CWL is proud and honored to announce it will now be offering the Adopt-A- Floppy Larynx Baby Program this holiday season. We know how hard and stressful it can be to provide gifts under the tree for your floppy larynx babies... now there is help.

Meet our newest volunteer, Molly!

Molly is a 5 month old female Cockapoo. She is currently in training to become a Certified Therapy Dog . Once Molly is certified, she will be able to attend CWL events and provide support for LM babies and families. She will also be working in a local hospital in honor of all our LM babies. We are happy and excited to have Molly on board and can not wait to see what her future holds!

Upcoming events:
Spring Fundraiser: date/location TBA
CWL's 2nd Birthday Bash!: July (exact day TBA) at the Monmouth Race Track
Barnes & Noble Gift Wrapping Benefit: November (exact date TBA)

Latest Press Releases:
Chibebe.com.au website homepage
The Journal: CWL's Holds 2nd Annual Family Fun Day & Blanket Drive!

Volunteer Position Available:
Awareness Leaders
CWL Bloggers

If you would like to volunteer for CWL please contact
CWL President Stephanie Huestion at CopingWithLM@yahoo.com

Chibebe Donation Program App

2012-01-03T18:24:00.000-08:00

Coping With Laryngomalacia, Inc.'s

Chibebe's Slumber Pod Donation Program Application

updated: 1 / 3/12

Requirements:

-The Slumber Pod must be going to a baby with LM, TM or BM.

-The baby in need must be under 6 months of age.

Note:The Slumber Pod is specially designed for newborn babies up to about 6 months, depending on the size your baby. After that, Chibebe Slumber Pods can be used by bigger children by switching out the infant harness for a regular slumber pod cover.

-The baby in need must live in Australia.

Required Information:

Your information will stay private and confidential.

1.Primary Email address.
2.Mailing address.
3.LM baby's name and age.

4.Date of and full diagnosis.

5.How did you find out about this program?

Needed Documentation:

Proof of address (example: copy of drivers license, utility bill, ect)

Proof of child's age

Written letter (on letter head) from child's ENT stating the date of and full diagnosis of your child along with a summary of the current treatment plan.

Please note, Chibebe donates one Slumber Pod per month. If your child qualifies but misses the one per month donated Slumber Pod you will have two options.

Wait until next month's donation.
Purchase a Slumber Pod through CWL for 50% off RRP.

Please choose which option works best for your family: ____________.

Mail or Email the application with the needed documentation to:

Coping With Laryngomalacia, Inc.

101 Wilson Ave Port Monmouth NJ 07758 USA

Email: CopingWithLM@yahoo.com

Once your application is received, you will receive an Email from CWL stating if your child was approved or not approved for this program.

We are updating!

2011-12-06T18:07:00.000-08:00

We are currently updating our website with new donor information,
helpful tab's and more information to help you cope with LM.

Need assistance right away?
Email CWL Founder&President
Stephanie Hueston @
CopingWithLM@yahoo.com

It's almost here!

2011-12-01T16:13:00.001-08:00

Hopscotch the Bunny teaches our friends
about exercise and a healthy lifestyle!
12/4/10

Coping With Laryngomalacia, Inc.'s
2nd Annual Family Fun Day & Blanket Drive!

This Saturday at the Leonardo First Aid house
located at 32 Viola Ave in Leonardo, New Jersey.

The event will run from 10am to 2pm

Activities for the day include:
-A white dove release provided by White Winged Doves
-Face painting provided by Party Starters Face Painting
-Spin art provided by A Bounce Above
-CPR/First Aid demo class
-Children's exercise class taught by
Hopscotch the Bunny from Jersey Shore University Medical Center
-HUGE gift raffle!

Complementary lunch will be provided by:
Todaro Pizza

Complementary childcare will be provided by the CWL Volunteers

Event photography by:
Rambling Photography

Items we will be collecting:
-handmade blankets
-infant formula & formula coupons
-children's DVD's

This event is FREE to the public... all are welcome!
TO RSVP to this event please click here.

CWL Supporters: Cyber Monday Deals!

2011-11-26T11:29:00.000-08:00

Looking for a great deal on a Moby Wrap? Or maybe some natural baby bath products...
Either way, Moby Wrap has partnered with amazing companies
to give you some awesome deals for Cyber Monday!

Customers just have to use the coupon code savegreen for savings. The coupon is valid for 11/28/2011 only. Visit www.savegreenmonday.com for all the details and links to each company's website.
Participating companies include:

Moby Wrap
ChicoBag
Alphabotz
Bobux
Celebrate Green
Earth Mama Angel Baby
Eat Cleaner
eco-kids
GoGreen Pocket Diapers
Kate Quinn Organics
L'ovedbaby
Mountain Mama
No Slippy Hair Clippy
Puppy & Bean
RoSK
Silly Billyz
Swoop
The I Like Book
To-Go Ware
ZoLi
Larrivo

Ready, set, SHOP! Remember... this coupon code ONLY will work for Monday!

Family Fun Day & Blanket Drive--Volunteer Sign Up!

2011-11-20T10:39:00.000-08:00

-Volunteer Sign Up-

(updated 11/27/11)

Donation Table: Danny Paden & Cait O'Donnell

Gift bags: Emilly H.

Selling /gift raffle tix table: Edie H.

Greeters: Chris Harris

Child Care: Heidi Anderson, Laura Paden--we will need extra toys, coloring books, crayons, playpen ect.

Event photographer: Rambling Photography

Video: Vinny Adamo

Gift raffle: Stephanie H & Emilly H

CPR training: Charmaine H.

Details: all volunteers must be at the first aid house NO LATER than 9.30am... if you can come the night before to help clean and set up please let me know. You will get credit for ALL hours you volunteer.
-all volunteers need to check in with Stephanie the day of! Volunteer Agreement must be signed and dated by each volunteer so volunteer hours can be credited.

Attire: CWL shirt from last year. If you do not have a shirt, Stephanie will give you one the day of.

Things we still NEED for the event:
-Drinks, case of water/soda/juice boxes
-Music..can someone bring an iPod w/speakers?
-Cupcakes
-2 donation containers
-Decor...blue/white table cloths, balloons.

Meeting: Depending on how many people...we can meet on the 26th.

Want to volunteer or donate? Please Email Stephanie at CopingWithLM@yahoo.com

Family Fun Day & Blanket Drive--Update!

2011-11-13T07:26:00.000-08:00

The CWL volunteers from last year's Family Fun Day & Blanket Drive!

We are getting close to CWL's 2nd Annual Family Fun Day & Blanket Drive!
The event is set for December 3, 2011 at the Leonardo First Aid building and will start at 10am sharp with a white dove release provided by White Winged Doves. A moment of silence will follow to honor the LM babies who have received their wings and the ones who have survived.

Activities for the day include face painting, a CPR/First Aid training class, an exercise class taught by JSUMC's Hopstoch the Bunny, cotton candy and spin art provided by A Bounce Above and of course....our gift basket raffle!

Some of this years donors include:

Meranda Lee handbags
Nap Nanny
Moby wrap
Torregrossa
The Nightmare Nibbler
Jersey Shore Premium Outlets
Scentsy
Rambling Photography, LLC.
Erin's Hourglass Boutique
and much, much more!

During the event CWL will be collecting:
-handmade blankets for LM babies recovering from airway surgery
-infant formula for LM babies in need
-children's DVD's for JSUMC's Pediatric floor

To RSVP to this event click here!

professional photography will be provided by Rambling Photography, LLC
along with free childcare provided by the wonderful CWL volunteers!

Are you interested in donating a basket or your time to this event?
Please contact CWL President Stephanie Hueston at
CopingWithLM@yahoo.com

Please note:
our volunteer meeting that was scheduled for
11/26 has been cancelled and will take place via Email.

Blankets for LM Babies Application

2011-11-02T18:56:00.000-07:00

Coping With Laryngomalacia, Inc.

Blankets for LM Babies Application

(updated: 1/2/12)

Coping With Laryngomalacia, Inc.

Blankets for LM Babies Application

(updated:1 /2/ 12)

Requirements:

Blanket must go to a child with LM, TM and/or BM.

Child must have been diagnosed by a doctor and meet one of more of the qualifying procedures.

Each child may only benefit from this program once.

Qualifying Procedures:

Supraglottoplasty

Bronchoscopy under general anesthesia

Comprehensive sleep study

Surgery for a trach or Nissen

Prolonged hospitalization due to complications from LM, TM and/or BM

Required Information:

Parents first and last name:

Mailing address:

Primary Email address:

Applicants full name and birthday:

Date of and full diagnosis :

Qualifying procedure and date:

How did you hear about this program?:

Color preference?:

Needed Documentation:

Proof of address (example:copy of drivers license, utility bill, ect)

Written letter, on letter head from child's ENT stating the date of and full diagnosis along with the date of the qualifying procedure.

Mail or Email your application with the needed documentation to:

Coping With Laryngomalacia, Inc.

101 Wilson Ave Port Monmouth, NJ 07758 USA

Email: CopingWithLM@yahoo.com (subject title: Blanket App)

Please note, this is world wide program. No matter where you live, your child can benefit from this program. With that said, CWL is not responsible for any charges/fees at customs. CWL does pay the full shipping and handling cost.

CWL receives all kinds of handmade blankets from all different donors. We can not guarantee all the blankets come from a smoke/pet free home so please wash your blanket prior to using.

November Update

2011-11-02T18:10:00.000-07:00

We have a lot going on at CWL!

We received another generous donation of 20 Gen2 Nap Nanny's from Nap Nanny,
if you would like to apply your child for a Nap Nanny please click here.

Our Scentsy Online Fundraiser is still running!
10-20% of your total purchase goes directly to CWL.
To shop this fundraiser please click here.

We are still accepting donations for our 2nd Annual Family Fun Day & Blanket Drive.
The deadline for donations is, November 26th.

Gift basket ideas:
Candle basket
Baby item basket
Friday movie night basket
Holiday basket
Fruit basket
Coffee Lovers basket
Pet basket
Spa basket
Family Game Night basket
Scrapbooking basket
Gift Wrapping Supply basket
Any kind of children's toys
Any WAHM items/gift cards
Gift cards to Target, Wal-Mart, Toys R Us, chain restaurants.

Our mandatory volunteer meeting for the
event is set for November 26th at 10am.
To RSVP click here.

Any questions or comments please Email CWL's President & Founder at CopingWithLM@yahoo.com

CWL is moving!

2011-10-13T10:57:00.000-07:00

Starting Friday October 14th CWL will be moving!
We are very excited to have more space to store our donations!

CWL President Stephanie Hueston, will be "out of the office" from 10/14-10/24.
All immediate concerns or comments should be directed to
CWL's Public Relations Coordinator Cali DeCaro. Cali can be reached at: RambleToMe@gmail.com

Due to the move there may be a delay in the shipping of Nap Nanny's, blankets
and formula, as well as replies to Emails sent to Stephanie Hueston.

We thank you again for all your support and understanding,
see you in a week! -The CWL Team

Whats happening now:

Shop for a cause!
Scentsy Online Fundraising Event
To shop click here.

Hookin' It Forward is donating $2.00 to CWL for every lovie sold.
To shop click here.
CWL is now accepting donations for it's
2nd Annual Family Fun Day & Blanket Drive gift basket raffle!
Gift basket ideas:
Candle basket
Baby item basket
Friday movie night basket
Holiday basket
Fruit basket
Coffee Lovers basket
Pet basket
Spa basket
Family Game Night basket
Scrapbooking basket
Gift Wrapping Supply basket
Any kind of children's toys
Gift cards to Target, Wal-Mart, Toys R Us, chain restaurants

if you are interested in donating please Email Stephanie Hueston CopingWithLM@yahoo.com and you will receive a reply after the move.

In case you missed it!
Check out CWL's latest press release in the Natural Awakenings Magazine.
To read the article click here.
Then click Monthly Magazines, September's issue, page 13

Where she was...where she is.

2011-09-29T12:41:00.000-07:00

The baby that struggled to take her first breaths...
now jumps and slides all morning at the Bounce House.

The baby that used to choke on every feeding...now makes her own pizza.

She no longer spends long nights in the
hospital...now she just goes back for Family Fun day.

The baby that needed to be worn all day...now picks her own apples.

No longer does she sleep hooked up to monitors and oxygen...
now she sleeps any which way she pleases.

She underwent airway surgery at four months old...
now she helps other babies recovering from the same airway surgery.

She sure has come a long way....

Note: all published/posted photos on the CWL website are property of Coping With Laryngomalacia, Inc.
You do not have permission to copy/paste, print or publish these photos for your own personal endeavors.
Doing so will result in a violation of CWL's Copyright policy, which is punishable by law.

9/18/11 event at JSUMC

2011-09-22T16:32:00.000-07:00

On September 18th, 2011
Coping With Laryngomalacia, Inc. participated in
Jersey Shore University Medical Center's 5k & Community Day!
CWL had a table set up with educational flyers on LM, LM awareness video and a handful of volunteers to answer any and ALL questions regarding LM and CWL.
Laryngo... what? Floppy larynx?

Thank you to our volunteers who took time out of their day to
help support our mission and floppy larynx babies!

To view photos click here.
To view a video made by JSUMC click here.

Special needs...special babies.

2011-09-16T07:35:00.000-07:00

"I don't think the worst thing that could happen to me is having a child with special needs. The worst thing would be to raise a child who is cruel to people with special needs"-Tyson Sawyer

Even in a world where 19% of America's population is considered disabled/special needs... the label... special needs... triggers thoughts of a child forever unable to enjoy any quality of life. Parents forever bound to caring for their dependent child... unable to enjoy parenthood.
And a situation where... "taking care" of the problem before it becomes a problem... is acceptable.

Why? Because not many people can deal a baby being born, not perfect.
How will it change my life? How will it change the lives of my other children?
It's.not.fair.

Newsflash, life is not fair.

Sometimes things happen in life that make you question if there is anyone actually out there.

Just because life isn't fair... doesn't mean it doesn't have all the possibility in the world to become amazing.

It takes a much bigger, stronger, selfless person to step up to plate, surrender all the plans, hopes, dreams and ideas of a child... they weren't given.

Do you grieve the "loss" of the baby who you thought was perfect and healthy?
Yes, you do. And it hurts.

Do you open your heart to a baby whose needs are so strong and the ability to live is even stronger... are you empowered, amazed, in awe of something so more "perfect" than you could have ever dreamed of? Yes. And your life...outlook on life...will.never.be.the.same.

I am a mother of a special needs child.

Seraphina was born with laryngomalacia, tracheomalacia, GERD, LVH of the heart, s2 heart murmur, central & obstructive apnea and front left lobe epilepsy.

When Seraphina was finally diagnosed with epilepsy... I sat in the hospital cafeteria ... sobbing while trying to eat a hot meal.

I said to my husband, "I can't believe we have a child with epilepsy.
I can't believe this is happening to us."

His reply, "But we do, Steph. "

He was right. We do.
So now what?
Does it change my love for her? No.
Will it forever change are ability as a family, to enjoy life? No.
Will Lilli be forever scarred for having a sister with special needs? Probably not.

As I finished my panini ... and wiped my face, I thought...
Okay... we will be fine.

Almost 20 months into having a child with special needs... we are just that. Fine.

Secretly, do I sometimes wish... it was different. Of course. I am human. Can I picture my life without Seraphina..exactly.how.she.is. absolutely not.

She has opened our eyes...and hearts... to a whole new world of living.
Really living.
We don't plan weeks in advance. We plan in hours.
We live in the moment. We enjoy every moment.

And every time Seraphina is unstably balancing on top of the couch yelling...
"look it! look it, Mommy!"
I think... yup, life is good.

another special needs mother, honestly writes about her journey with DS.

Scentsy Online Fundraising Event!

2011-09-14T10:28:00.000-07:00

You are invited to CWL's Scentsy Online Fundraising Event!

To RSVP and shop this event please click here.

10-20% of your total purchase will go directly to
CWL so we can continue to make our mission a reality!

Nap Nannys, sick babies and a 3 year old

2011-09-09T16:08:00.000-07:00

When I was nine months pregnant with each of my babies I wrote each of them a letter. The letters are framed to match their nursery and sit proudly on their dresser. In Seraphina's letter I wrote, "the good always follows the bad." I remember feeling like I had to tell her that. I had to put it on paper, for her.
Fast forward four months... and I was sitting in ICU...Seraphina had just had surgery and was on morphine, Tylenol, oxygen and steroids to keep her lungs open. I sat there wondering why would something like this have to happen to my child. Then I remembered the letter I wrote her. The good always follows the bad. That night was the bad... but what was the good? She was alive-very good. But she was in ICU- very not good. My head was spinning. But I knew I had to find the good.
I had no other choice but to make the situation I was given, as good as it could possibly be.
Three weeks later, CWL was founded. Why? Because I needed to show myself but more importantly, my children that the good always follows the bad. That in a horrible situation you have the choice to see that little glimmer of Hope.

Today... I was reminded of why CWL is the good that followed the bad.

Seraphina was napping and my husband was working on his car. I had to mail out two Nap Nanny's so I asked Lilli if she wanted to come along. Of course she said yes as long as she could take her sweatshirt off in the car because, "it not cold in there, Mommy."
We got to the post office and I was taking the HUGE Nap Nanny boxes out of my car.
Seriously, you don't realize how big those boxes are until you are trying to juggle them and open a door at the same time! :)
Lilli asked me what color were the Nap Nanny's... I replied, "I think they are tan, Lilli."
And then... she looked at me with those big blue eyes and so innocently said the following...

"Nap Nanny's for sick babies. Nap Nanny's make them all better."

And there I stood. Trying to hold a huge box and wipe away the tears.

Yes Lilli, they make them all better.

Calling all CWL Volunteers!

2011-09-06T17:48:00.001-07:00

Attention CWL Volunteers...you are needed!

Past and new volunteers are welcome!
You do not have to have a baby with LM to be part of the CWL Team!
Just a love for doing good for some pretty amazing pint-sized powerhouses :)

Upcoming events:

Jersey Shore University Medical Centers' 5k and Community Day
September 18th, JSUMC- Neptune NJ
11am-2pm
volunteers are needed to help educate the public on LM and CWL's mission.

My Fair Nanny, LLC's Free Fair
October 2nd, Dorbrook Parks- Colts Neck NJ
Time:TBA
volunteers are needed to help educate the public on LM and CWL's mission.

CWL's Blanket Drive and Family Fun Day
December 3rd, Leonardo First Aid Building- Leonardo NJ
10am-2pm
volunteers will be needed for:
helping set up the night before, run the event (each volunteer will have a specific job) and clean up.
wrap gift baskets for the raffle.
educate the public on LM and CWL's mission.
volunteers for this event are asked to attend a mandatory volunteer meeting in November.

If you are interested in volunteering your time to any of these events
please contact Stephanie Hueston CopingWithLM@yahoo.com

Breastfeeding Support Team

2011-09-01T13:01:00.000-07:00

CWL's Breastfeeding Consultants offer gentle, nonjudgmental support, advice and education for mothers trying/wanting to breastfeed their LM babies.

Please note, all of our consultants are experienced in nursing LM babies but are not medically trained. If you have any questions/concerns about your health or your baby's health please contact your doctor immediately.

Read over each Consultant's Biography and contact the Consultant that best suits your views and needs. You can expect a reply within 1-2 business days.

Carolanne Murphy
Email: Doncar121@aol.com
Biography
The first time I heard Laryngomalacia I was 18 and a new mum to my first born He is now 17! Martin didn’t have surgery but when I think back I sure think he needed it. He struggled with recurrent infections

Asthma, bronchitis, eczema, reflux now all he is left with is stridor when really sick with a upper respiratory infection, asthma and he wears a hearing aid due to the amount of perforations of his ear drum as a child.

Laryngomalacia became a daily thing in our house 13 years later when our long awaited baby after doing IVF and having multiple early pregnancy losses we had given up and he was a lovely surprise Travis who is 4 in November ...... when he was born I was told his breathing noises were from mucus from birth he was admitted after turning limp and blue in his car seat and they diagnosed him with reflux and sent us home with gaviscon and arranged an outpatient Ent appointment ....It took 5 months to get a flexiscope preformed which confirmed Laryngomalacia he had a tightly curled epiglottis and "mild airway collapse".

Travis struggled with everything breathing, sleeping, feeding.....I often called our gp or healthvisitor worried about him to be told that it was just a noise, maybe a viral infection, saline his nose, etc

I would spend all day trying to breastfeed him and all night watching him sleep I was exhausted. His sleep was disturbed and his apnea alarm would continually sound. He was most settled sleeping on my chest. At 18 months he was diagnosed with Failure to Thrive and thought to be due to his dairy allergy he started calorie drinks.

Travis had no energy and was lethargic constantly getting infections ....I continually raised my concerns…. home sleep studies were normal and I had to prove there was something terribly wrong with my child. I took videos, kept records of his O2, pulse and alarms ..... Ent said he didn’t present as a child with airway obstruction.....

I phoned my local hospital concerned he had sternal recessions and was really struggling to breathe he was taken in for observation where it was discovered he had apnea for over 20 seconds, sternal recessions and slow respiration 5 breaths a minute. He was referred to a Ent specialist 4 hours away after the first consultation in Glasgow in November 2010 he was booked in for a microlaryngoscopy and bronchoscopy (MLB) tonsil and adenoid removal and a sleep study on the ward the night before. His sleep study revealed he was retaining CO2 badly due to severe obstruction the MLB showed severe Laryngomalacia and Bilateral Vocal Cord Palsy. They performed Suproglottoplasty and lazered close to his esophagus.

He was in hospital for 9 days. He currently is still Failure to Thrive but has started to gain weight slowly he still has reflux and has recently been diagnosed with asthma. He still wears an apnea monitor at night as he still has apnea both central and obstructive. We are waiting for him to "Outgrow" all of these things.

We had another baby a total surprise but a lovely one after being told we would never have any more children to be bless with 2 in 2 years was amazing.......

Jaydon arrived on Christmas day 2009 I had a severe placental abruption and the fact that me and J are alive to tell the tale there truly was an angel watching over us that day

Jaydon had nasal flaring at birth ENT checked him over and decided it was birth mucus and nothing to be concerned about! Again he struggled with breast feeding ,sleeping, we often syringed milk into his mouth to ensure hydration. Jaydon was mix fed breast and formula as I was not prepared to let him become failure to thrive but also wanted him to have the benefits of breast milk.

I remember changing his nappy waiting for the midwife to come out on home visit and he cried his stridor was so loud I felt my world spinning "not again" please

I held put him inside my top and held him until he was calm .....the midwife arrived and I told her " He has Laryngomalaia" she phoned the on call registrar who said I knew what I was doing due to 2 other children having had it and to arrange an gp appointment to refer to Paediatrics. My gp said he didn’t need a referral as it was nothing to be concerned about I insisted. I went to paediatrics when he was 6 weeks old and suggested referral to ENT a home sleep study. The sleep study revealed sleep apnea we repeated it each month for 5 months ENT said he would "outgrow" it and didn’t even scope him.... when his results of his sleep study showed severe desaturations and 110 dips they referred him to Glasgow ENT which is 4 hours away. There they performed a flexi scope which confirmed Laryngomalacia and booked him in for supraglottoplasty that was on 26th May 2010 when he was 5 months old.

Jaydon is currently waiting to see respiratory and Ent he has asthma, reflux, sleep apnea, hypotonia. We do physio as he has a mild left side weakness due to oxygen starvation when he was tiny.

Laryngomalacia has engulfed our life’s and taken so much energy, and happiness...... I would not change my children for the world I would change the situation that they have no choice but to endure...... Little things give me pleasure and I appreciate that life is so delicate and fragile. To watch your child struggle to breathe is scarey and often lonely. I can’t wait for the day the LM fairy comes to my house I will throw one hell of a party and you will all be invited x

Janet Tuchscherer
Email: Janet_44@hotmail.com
Biography: I am a 31 yr old Canadian stay at home mom to three kids. Briella is 3, Cash is 2 and Aerisyn is 8 months.

When my oldest was born, I wanted to breastfeed, but was told in the hospital by a lactation consultant that it probably wouldn’t be possible for me, as I had inverted nipples. This was very upsetting to me, so I found another lactation consultant who had me wear breast shells and when my daughter was 5 days old she latched for the first time and nursed until she was 15 months old with no troubles other than a couple of bouts of thrush!

Breastfeeding my second child was much easier, as he was born two months after I stopped nursing my oldest! He nursed for 16 months, weaning just in time for his baby sister to be born.

Aerisyn is my LM baby. She was diagnosed when she was 3 months old, after numerous apnea spells that almost took her life. She also has reflux and epilepsy. Aerisyn has always done very well with breastfeeding. She does not aspirate on breastmilk, but chokes when given a bottle. The only problem we have had with breastfeeding is that every time she gets sick and quits eating, I get plugged ducts which usually turn into mastitis. Other than that, nursing her has been an amazing experience.

I breastfeed my children because I feel that it is the best thing I can do for them, both physically and emotionally. I love the bond it forms and, especially with Aerisyn, love knowing that I am doing all I can do to keep them healthy. There is so much in her life that I am unable to fix that I like feeling like there is one thing I can do that hopefully makes a difference.

Patti Gibson
Email: PattiHodgeGibson@gmail.com

Biography: Breastmilk is one of the best gifts we can give our children, especially when they have health issues. Research continues to uncover more and more benefits to this amazing drink that was created just for them! I have breastfed all four of our kids (ages 3 to 14) and have had numerous challenges during those 7 rewarding years. I would love to be able to help and encourage you! My experience with breastfeeding includes laryngomalacia, preemies, twins, severe reflux, failure to thrive, apnea, cyanosis, pumping, extended breastfeeding, mastitis and more. My just-turned-three year old has laryngomalacia and possibly a vascular ring. I still BF her and she is doing well, thankfully. Please contact me if you have any questions or feel discouraged. I live in the Chicago suburbs.

Annie Papley

Email: annie.papley@bigpond.com

Biography:My name is Annie and I live in Melbourne, Australia. I am a mummy to 3 beautiful boys, James 5, Thomas 3 and JJ, 2.

I have wanted to be a mum my entire life and when my beautiful James was born in Oct 2005, my life was complete. He was the most amazingly beautiful and perfectly healthy little boy, who filled our hearts with such happiness. He still does.

I had studied Early Childhood Development and Nursing and had looked after children for most of my life, so the only thing I had to learn was breastfeeding. I knew how to bath, settle, swaddle, cuddle, burp, change nappies etc. Breastfeeding was my only challenge. How hard could it be?

Breastfeeding was something I assumed I would always do. It wasn’t questionable. The most natural thing on this planet. All mammals do it. Couldn’t be that hard? Just pop them on and off they go? Isn’t that what the books say?

Nobody told me just how hard it really was. Maybe not for every mother and baby, but for us, it was. James didn’t latch properly and within a day I had cracked and bleeding nipples with the associated pain that is indescribable. Instead of being a natural and beautiful experience, it was stressful and painful beyond words. I was determined that this is what I wanted to do. I expressed and expressed to keep up my milk supply and almost cried with every feed as it hurt so much. After about 6 weeks of struggling, we finally got into the swing of it and for the next 2 years, I loved every second of breastfeeding him. I loved the closeness, the bond between us, the sensation of feeling him close to my skin and knowing that I was giving him the absolute best start in life that I possibly could. This is how I had planned to nurture my baby and I loved being able to provide it for him. He fed when he was happy, when he was sad, when he was tired, hungry, thirsty, scared or sick. Any excuse. He loved it and so did i.

The only reason I weaned him was that I was 7 months pregnant with my next baby and I felt that after 2 years, that it was now time to stop before the baby arrived. The last feed I gave him broke my heart and I cried as i stroked him and was so thankful that we were able to share this amazing bond.

Two months later, in December 2009, my little Christmas angel Thomas was born. As James was perfect in every way, I just assumed my next child would be too. Sadly, Tommy had a very loud stridor from his very first breathe. He was born via caesarean section so thankfully there was a paediatrician in the room. I didn’t realise that she was about to become one of the most important and special people in our lives. She was very concerned about his breathing and while I went to recovery, Thomas, my husband and our Paediatrician watched his breathing closely to see what was going on. He was perfect in every other way but he just couldn’t breathe. They suspected LM straight away. I was pretty confident that after 2 years of feeding James, that I would be able to do it for Tommy with ease. All my nursing and early childhood development qualifications and experience, plus 2 years of being a mummy and breastfeeding continuously, didn’t prepare me for breastfeeding a baby that couldn’t breathe. He couldn’t breathe lying flat at all. The first 24 hours were heartbreaking as I was bed ridden after the caesarean. The first night, Tommy couldn’t be settled. He cried and cried and so did i. His stridor was so loud. The neonatal team came and looked at him and were concerned and watched him overnight. He was diagnosed with Laryngomalacia but needed a scope to confirm the diagnosis. On his first day of life, Tommy started turning blue while I fed him. The terror was indescribable. My beautiful little boy that we were so excited to meet was turning blue and I didn’t know what to do. His ribs and neck were collapsing (intercostal recession and tracheal tug). The nurses suggested that I express milk into a bottle and try to feed him artificially. This is not what I had planned. This wasn’t how it was supposed to be. Everyone was so excited about his arrival and I didn’t know if he was going to survive. I was terrified. I expressed the milk into a bottle and within seconds Tommy was choking, having severe laryngospasms, was dark blue and struggling to breathe. My whole world was falling apart. We were asked if we wanted to tube feed him but I was desperate to breast feed. I was so blessed to have the most beautiful obstetrician who organised a lactation consultant from another hospital to come and see me. Tommy couldn’t breathe if we lay him down to feed. We tried the normal positions, the cradle hold, the football hold, under the arm and nothing worked. He couldn’t drink from a bottle, as he couldn’t coordinate breathing, sucking and swallowing. Our last resort was to feed him in a sitting position with him sitting upright and facing me. And it worked!! By this time, my nipples were raw and bleeding, I had milk pouring out everywhere and a hungry little struggling new baby. It was difficult beyond words to begin with. Just manipulating a newborn into a sitting position was so almost impossible but after a few day, we worked it out and he loved it and so did i. He could only feed for a few minutes at a time, as he wasn’t able to breathe and suck at the same time. So I fed him all the time. It was just very small amounts, very frequently, and although it was madness, it worked. Tommy was scoped at 5 days old and LM was the confirmed diagnosis and we went home. He was then diagnosed on Christmas Eve with severe reflux and started medication at 11 days old.

From here our breastfeeding journey began. It was something we constantly did. I think he was permanently attached to me, but it was the only way we could keep his weight up, keep him settled and soothe his reflux. Thomas was on a dairy free diet for a dairy protein allergy and I was too, as cows milk is present in breast milk. I had to avoid many foods as so many things made his reflux terrible. We finally seemed to get it right and I breastfed him successfully for 2.5 years. I loved every second of it. I was so blessed to have the initial support and I am still so glad that I persisted and did it for both of us.

Thomas is now almost 3 and ¾. He is still beautiful. He is still struggling with LM, severe reflux, asthma, eczema, central and obstructive sleep apnea, sliding hiatus hernia, recurrent croup and discoordinated swallowing and choking. Apart from that, he is a perfectly happy and very normal wonderful little boy that achieved all of his milestones early. He is on medication 3 times a day for reflux and twice a day for asthma. He still chokes and is still little for his age but he is happy.

We have been fostering our third child since he was 9 weeks old. He is now 2 years old. Obviously, I didn’t breast feed him and always felt sad that he missed out on that experience, but we held him in the same position and snuggled him and stroked him while he drank his bottle, so he experienced the bonding of feeding time and he thrived.

I am committed to helping any of you who are wanting to, or trying to, breast feed your baby. Feeding an LM baby may not be what you expected or dreamed of, but it can still be a beautiful experience with the right support system. If you have any questions or need someone to chat with, please email me at anytime at

annie.papley@bigpond.com

No matter what way you choose to feed your baby, the most important thing is that you choose what is best for you, what you feel capable of, and what works for both you and your baby to ensure that you are happy, comfortable and confident.

Most importantly, remember to be amazed at how beautiful your baby is. They grow up too quickly.

Dwan Bray
Email: mzheiressceo@gmail.com
Biography:

My name is Dwan L Bray. I am a ECE professional and a SAHWM of two girls ages 7 and 4. I have a combined experience of about 4 years of breastfeeding and self weaning. Both of my daughters were preterm four weeks. Although my babies do not have Laryngomalacia, we have experienced various complications of nursing preterm, acid reflux, allergies, lactose intolerance, and pulmonary issues. I have a lot of stories I'd love to show with other nursing mothers from complications to nursing toddlers. I enjoyed making my babies food from Organic produce and would love to help other mothers that maybe interested in saving money and making sure they baby receives the best in their early stages of beginning solids.

I am especially excited to be a part of this support group, because I have a dear friend whose daughter is diagnosed with Laryngomalacia. As a mother, my heart and prayers and continuously for the health of our precious angels, and I will help in any way possible to support families.

Nap Nanny Application

2011-08-25T18:16:00.000-07:00

Coping With Laryngomalacia, Inc.'s

Nap Nanny Donation Program Application

updated: 1 / 2/12

Requirements:

The Nap Nanny must be going to a baby with LM, TM or BM.

The baby in need must be under 18 months of age.

The baby in need must live within the USA or Canada unless the location is cleared by CWL prior to receiving payment.

Details:

There is a $30.00 (for USA) and $35.00 (to Canada) flat rate s&h cost that can be paid via PayPal or check. Once the s&h balance is paid the Nap Nanny will be shipped out, within 1-2 business days. The Nap Nanny is shipped USPS Parcel Post with a tracking number and should reach it's destination/customs within 5-10 business days. When shipping Nap Nanny's out of the USA the receiver may be subject to custom charges. CWL is NOT responsible for these charges.

Note 1: DO NOT make payment until you have received an Email from CWL stating your child was approved for this program!

Note 2: Local pick up in available- Port Monmouth, NJ

The Nap Nanny will be held for two weeks after receiving a completed application. There is also a two week grace period for payment. If CWL does not receive payment or any form of communication within those two weeks CWL holds the right to pass the Nap Nanny to another baby in need.

Required Information:

Your information will stay private and confidential.

1.Primary Email address.
2.Mailing address.
3.LM baby's name and age.

4.Date of and full diagnosis.

5.How did you find out about this program?
6.Payment via: (upon receiving a confirmation Email)

PayPal-CopingWithLM@yahoo.com

check payable to: Coping With Laryngomalacia, Inc.

send check to: Coping With Laryngomalacia, Inc.

101 Wilson Ave Port Monmouth NJ 07758 USA

Needed Documentation:

Proof of address (example: copy of drivers license, utility bill, ect)

Proof of child's age

Written letter (on letter head) from child's ENT stating the date of and full diagnosis of your child along with a summary of the current treatment plan.

Mail or Email the application with the needed documentation to:

Coping With Laryngomalacia, Inc.

101 Wilson Ave Port Monmouth NJ 07758 USA

Email: CopingWithLM@yahoo.com

Once your application is received, you will receive an Email from CWL stating if your child was approved or not approved for this program.

Update on Seraphina

2011-08-19T11:21:00.000-07:00

First off, I want to thank everyone at Coping With Laryngomalacia, Inc. for all your support, strength and kind words this past week. It has been truly amazing, to watch this organization carry on while I was needed elsewhere. Every single person associated with CWL is amazing, professional and out right outstanding. I am honored to be part of something so insanely bigger and better than I ever thought it could be. I have a special place in my heart for each of you.

As most of you know, since Seraphina was born she has had more going on than just a floppy larynx. She was having symptoms that LM/TM do not cause--and I... being the stubborn mother bear that I am...was extremely determined to find out what the F was going on.

One week after Seraphina's first birthday, she woke up from her nap--fussy. Not normal fussy--weird fussy. I put her on the floor, hoping to distract her with some toys... she turned her head to the left and starred. I called her name...no response. I picked her up and put her on my chest, she would not look at me or respond to my voice. Less than a minute later she was normal.
I knew something was wrong. I just didn't know what.
Two weeks later we were out shopping and Seraphina "passed out" then did the starring episode again. This time it was longer...a lot longer.
After a week in the hospital I was told...that I was describing a seizure to the doctors and we should medicate her. Scared, overwhelmed and confused...we did.
After 6 weeks of a horrible reaction to the medication the
doctors agreed she had to be weaned off.
Two weeks later she did the same exact episode I had first witnessed in January.
And so our journey began....
The episodes went from one here and there... to daily... then multiple times a day... then episodes lasting minutes not seconds... then episodes that started at just starring turned into pulling on her clothes, smacking her lips and falling to the floor.
Since it was never medically documented the doctors could not confirm or rule out seizures.
But always suggest medicating her...it was always a catch 22.
Then Seraphina's episodes of low oxygen levels started.
I would call the doctor... she is breathing but her o2 is dropping.
Every time I was assured she was fine.
And every time assured the doctors she was not.
Then Sunday night came along.
Seraphina was sleeping and kept setting off her pulse ox.
After about 45 minutes of short alarms.... she dropped into the 80's and would not stay above 91--even with 4 liters of o2.
Off to the hospital we went.
The next day she was hooked to a VEEG to check for those "episodes"
I had been telling the doctors about.
Those episodes that seemed painfully similar to focal seizures.
But again... what do I know...I am simply a mother.
Tuesday morning... Seraphina was drinking her bottle...and it happened.
She started seizing.
She seized 3 times that day with one seizure lasting 7 full minutes.
The next day she seized for 8 minutes--in my arms.
We met with a doctor who specializes in epilepsy.
Finally, someone put the pieces together.

Seraphina has epilepsy.

The doctor is almost positive it's the left front lobe that is seizing--hence why she uses her right hand to pull at her clothes during the seizure.
All those episodes of low o2 are symptoms of this type of epilepsy.

Good news? The doctor is 99% sure once her seizures are under control her o2 levels will be normal--yay!

Not such good news? She needs medication now---every 8 hours---for the next 2 years...even with that there is a 30% chance she will still have seizures. And she can't go on the rides at Sesame Place... or go swimming alone or operate heavy duty machinery unattended... ;)
(damn)

My thoughts? My daughter has finally gotten the diagnosis and treatment I have been so crazily on the hunt for. I knew something was wrong. I knew those "episodes" she was doing were not for "attention." I knew when right before a episode started and she would yell "mommy! mommy!" and rush over to me...wanting to be held... so she could seize... in my arms... I knew that I had to do everything and anything it took to get her the help she was obviously asking me for.

I am her mother. She's half me. She lived inside of me for 9 whole months.
No test or monitor download needed to know something is wrong.

Through this whole journey... first with laryngomalacia then with surgery, apnea and reflux now epilepsy... looking back... the best thing I EVER did for her... was listen... to her.
I blocked out every person and doctors opinions...and listened to my baby.
I listened to her cry. I listened to her laugh. I listened to her breathe.

Deep down am I completely devastated that she has to go through this?
Yes. The words can not even describe it.
You truly have no idea how it feels until YOUR baby is seizing in YOUR arms...and all you can think is... please... whatever I have to do to get you back... I will. Whatever it is.
The minutes seem like years...
After Seraphina's last seizure... I whispered to her....
There you are Seraphina... I missed you.

But missed... isn't even close to how it really feels.

Blanket donation from Hookin' It Forward

2011-08-05T18:40:00.001-07:00

...the fabulous ladies from Hookin' It Forward...

Once again I am blown away by the publics support and love for floppy larynx babies.
Two days ago CWL received a BIG donation of handmade blankets, hats and bunny lovies from a crocheting group called Hookin' It Forward.
Hookin' It Forward (Franklin, TN) is made up of a group of co-workers that get together during lunch once a week to crochet. Among making items for their family and friends, they like to help of charities and people in need. Hookin' It Forward has made numerous preemie hats for babies in the NICU at Vanderbilt Children's Hospital in Nashville and one of their next projects is to help make winter scarves for the Special Olympics.

And it just so happens one of the groups members, Karen is a LM Supermama :)

Thank you Hookin' It Forward for your time, talent and amazing donation.
MANY floppy larynx babies will now be comforted as they recover from airway surgery in ICU.

Want to learn more about Hookin' It Forward?
Click here.

End of the summer AVON Fundraiser

2011-08-04T11:59:00.000-07:00

It's back!
What a great way to end the summer by taking advantage of
all the super affordable sales and clearance items from Avon!

10% of total sales will go directly to CWL!

Event host: Misty Hale, Oh My Avon
Start shopping: click here.
RSVP to this event and invite your friends: click here.

Remember to use code: AVONFORLM2 during your checkout!

This event will run from August 4- 24

Now go shop for a great cause!

Lia Sophia Fundraiser

2011-08-04T11:12:00.001-07:00

Coping With Laryngomalacia, Inc. is proud to announce that we raised $24.00
to help keep our mission a reality with the Lia Sophia Fundraiser !!!
BIG thank you's to Karisa Playter for all of her hard work with this online fundraiser
and to everyone who helped shop for a cause!

What can we do with $24.00?

Special Offer from Get Organized! Journals

2011-08-04T10:35:00.000-07:00

Coping With Laryngomalacia, Inc. is proud and honored to
welcome another supporter to the CWL Team!
Get Organized! Journals is now offering their
"Get Organized! Family Medical Journal" for
60% off retail at $9.98 each (plus s&h)
to parents of floppy larynx babies.
This organizer is PERFECT for keeping track of all your floppy larynx babies appointments, treatment plans, medical bills...ect... there is even a "pull-out" form for Daycare or School to let them know which medications your child is taking and how to give it to him/her safely.
Basically, this is a MUST HAVE for every LM Supermama :)

How to order:
Please Email Jodi Pappas directly at
jodie@getorganizedjournals.com

Don't forget to "like" Get Organized! Journals on Facebook!

Takin' a break

2011-08-02T14:23:00.001-07:00

This weekend was break time... for the CWL Team.

Saturday was a Girls Night Out with CWL's PR Cali DeCaro, CWL Volunteer Emilly Hueston,
CWL President & founder Stephanie Hueston and a few close friends.

Sunday was a fun family day at Sesame Place with
CWL's President Stephanie Hueston + family and CWL's Extensive Assistant Christine Amaro + family.

...a horrible situation brought us together...best friends we will remain, forever...

Cali DeCaro, CWL's PR and Stephanie Hueston, CWL's President & founder
enjoying a nice night out on the Jersey Shore!

Seizure on aisle 5!

2011-07-29T18:12:00.000-07:00

Have you ever been in a room full of people and feel so.painfully.alone?
I did. Today.
Seraphina had a rough morning and took an early nap... usually thats the tell tale sign another cluster of seizures are coming. I kept telling myself today she was cranky because she's teething (mind you... she now has all her teeth). She woke up two hours later and we desperately needed to run to the food store so I packed both kids up and off we went... like.every.other.time.

She cried. and cried. and cried some more. I pulled cookies off the shelf and pleaded with her to hang in there until we were done. She started kicking Lilli and hitting her. I knew... it was coming.

It's like a bad storm... you can see coming. You can feel it.

We got to the paper towel aisle and Seraphina was a wreck. Screaming so loud people we starring at me. (probably thinking... why doesn't that mother control her child!?) Then she stopped breathing. There I stood next to the stack of Bounty with a non breathing toddler who was turning purple. I blew in her mouth twice and 20-30 seconds later she started breathing again. Then she continued to cry.
Lilli looked up at me and said, Bappy?
She knew it was coming.
I told Lilli I knew a seizure was coming and we had to leave.
Lilli being Lilli... agreed but only if she got to bring the Teddy Bear cookies
I took off the shelf home with her. :)
Seraphina sat in the shopping cart screaming.
Kicking Lilli and... Lilli... patiently telling Seraphina to "please" not kick her.
I was sweating... I didn't care about my coupons... I didn't care how much money I saving...
or not saving... I knew what was about to come...
Mid way through ringing up my order the cashier looked at me and said....
your baby is hurting your older daughter and shes asking you for help.
I replied... MY baby has epilepsy and she's about to have a seizure...
I need to get out of here, asap.
The cashier did not say a word.
By that point Seraphina was unconscionable so I stood her next to me while I threw the food into the bags.
A white hair lady was next in line... she smiled at Seraphina and told her how cute she was.
Then she came up to me and said... excuse me miss... I think there is something wrong with your baby... I am talking to her and she's not answering me.
My heart fell into my stomach.
I knew.
I looked down and saw my beautiful baby seizing.
Seizing at the checkout at Shop Rite.
I said... she's not answering you because she's having a seizure...
There I stood...with my seizing baby, 2 year old and cart of groceries.
And.no.one.said a word.
I picked Seraphina up and went to the exit until she came out of it... and we left.
As I buckled my kids into their car seats...the ache in my heart took over.
All I could think was... this sucks... so much.

Power of Parents

2011-07-26T09:54:00.000-07:00

A few days ago CWL asked YOU to write to Parents Magazine and tell them why Stephanie Hueston and Coping With Laryngomalacia, Inc. should win their Power of Parents Award.

Here is what Cali, Coping With Laryngomalacia, Inc's PR had to say:

Hi All!!
I would like to nominate Stephanie Hueston from Coping with Laryngomalacia (CWL) for the Power of Parents award! Stephanie has been put in a horrific situation-one that a family should never have to endure- but instead of wallowing in self pitty she allowed it to empower her! This is something most of us wish we had thr ability to do.

She spent the first year of her daughters life in & out of hospitals,surgerys,drs offices and all with no answers and no cures. On top of this she was feeling completely alone but Steph being Steph knew there had to be other people out there feeling just as alone but going through the exact same things. She knew her baby could not be thd only one going through airway surgery at months of age and getting rejected by drs whom refused to treat her baby. After searching for a support group she came up empty handed, devestated and feeling as alone as ever. Most of us wouldve stopped there but Stephanie decided there needed to be a group that would not only raise awareness of LM but provide support (in many ways) to famlies in a similar position.

The name alone says so much. COPING with lm..not "suffering with" and not "living with" but coping. This name speaks volumes about Stephanies understanding of what these parents are going through. Unfortunately not all those in need of support are living with lm because some have already lost their babies to this often unheard of defect and those that are living with it cannot simply live with it..they must cope.

Stephanie has brought together hundreds of people all over the globe that have been touched by Laryngomalacia. They may not be able to spell it or say it and they may not even be able to fully understand its effects but because of Stephanie and CWL they know where to go for an understanding shoulder to cry on, a caring ear to vent to and a huge group of people to ask questions of, get information from and most importantly not feel so alone in their struggles.

CWL does amazing things for amazing babies and the only reason it can is because of an amazing mother who refused to give up and refused to let any parent go through what she went through. Stephanie is more than an inspiration-she is what the Power of Parents award is based on!

Have a beautiful day
Cali DeCaro

Now it's YOUR turn... get those fingers typing and send your Email to:
Advocacy@Parents.com

Winner receives a donation from Parents Magazine! :)

Formula Donation Program

2011-07-26T08:41:00.000-07:00

Having a baby with health issues is not only scary, exhausting and overwhelming
but it's financially draining as well.
Our mission here at CWL is to provide support, strength and education to
parents, families and patients coping with LM.
The CWL Team works very hard--everyday-- to make sure we are making our mission a reality!
With that said...
We are proud to announce the birth of our newest program,
The Formula Donation Program!
Through this program CWL will be able to give
money saving formula coupons and expensive formula to needy LM babies and families.

For more information on this program please click here.
If you would like to learn how you can donate coupons and/or formula
please contact Stephanie Hueston at CopingWithLM@yahoo.com

The right thing

2011-07-23T11:52:00.001-07:00

I remember when it was just Lilli and I.
I was a mother of one.
I had no idea what laryngomalacia was, had never witnessed a focal seizure and the local children's hospital did not know me on first name basis.

I was a different mother. Not a better or worse mother. Just different.
I planned my day around Lilli's 2pm nap time.
Everyday she would sleep from 2-4p.
I sterilized her binky's weekly and made sure every week she
had at least one homemade snack (such as banana bread, veggie cookies, muffins).
Every month I would read my Email from Gerber---silently checking off all the milestones Lilli had mastered while patting myself on the back.
Good job mom, I would whisper to myself.

I felt on top of things.

I felt like I was doing it right.

I knew what kind of mother I was, what kind of mother I wanted to be.
And I knew my daughter was getting the very best of me.

Then... I became a mother of 2 under 2... and a mother of a baby who needed more than just homemade veggie cookies...and everything changed.

Now life isn't planned around nap time it's planned around doctor visits and hospitalizations.
I don't sterilize binky's... in fact Lilli is almost 3 is still has one.
I never thought I'd be that mom.
Potty training is a nightmare... and it's my fault.
I tell myself everyday... be patient.
But it's hard to be patient when I am so f-ing angry I have to
watch my 18 month old seize on my bathroom floor.

It's the constant struggle... to find normal.
To accept, cope and move forward.
To do the right thing.

You see, every time I put organic carrots in Lilli's cookies... I knew I was doing the right thing.
Every time I spent the extra money on chlorine free diapers for her perfectly perfect tush... I knew I was doing the right thing.
Every time I checked off another milestone from my Gerber Email... I knew I was in line to win the Mother of the Year Award.

Now... I don't know what the right thing to do is.
I cloth diaper Seraphina to keep chemicals away from her but then I am supposed to give her brain-wave changing medicine every eight hours.
I used to keep my hand on her chest at night... making sure she was breathing.
I used to think... if I am holding her, watching her... than she will continue to breathe.
I thought I was doing the right thing.
I.was.wrong.
Now I am supposed to hook her up to a machine at night that will breathe with her... forcing air into her lungs when she stops breathing.

One day I know I will feel like how I did with Lilli.
One day I will look back and say... yes, I did it right... look where she is now.

Sometimes the hardest thing to do is the right thing...but it's always worth it.

Nap Nanny Donation Program

2011-07-19T16:59:00.000-07:00

Thanks to Nap Nanny's generosity and love for floppy larynx babies, Coping With Laryngomalacia has been able to help many LM babies in need of a good nights sleep.

Coping With Laryngomalacia is proud and honored to be
working with such an amazing company!

Here is an updated list of where our LM babies are sleeping a little better tonight!:

Huntsville, AL

Benton, AR

Corona, CA
Los Angeles, CA
Marina, CA
San Diego, CA
Stockton, CA
Valley Springs, CA
Victorville, CA

Denver, CO

Palm Coast, FL
Pierson, FL

Burlington, IA

Sagle, ID

Belvidere, IL
Machesney Park, IL

Hiwatha, KS
Topeka, KS

Brusly, LA
New Orleans, LA

Stow, MA

Clinton, MI
Midland, MI

Coon Rapids, MN

Springfield, MO

Biloxi, MS

Atlantic Highlands, NJ
Belford, NJ
Forked River, NJ
Keyport, NJ
Lawrenceville, NJ
Red Bank, NJ
Toms River, NJ

Las Vagas, NV

Calcium, NY
Yorktown Heights, NY

Austintown, OH
Lodi, OH
Medina, OH

Molalla, OR

Danville, PA

Nunnelly, TN

Trinity, TX

West Jordon, UT

Newport News, VA

Essex Junction, VT
Swanton, VT

Seattle, WA

Beloit, WI

Airdrie Alberta, Canada
Grande Prairie, Alberta, Canada
Lloyminster Alberta, Canada
Newfoundland and Labrador, Canada
Ontario, Canada

APO, Italy

How to Help

2011-07-14T11:30:00.000-07:00

When you see someone in need. You help.
For most people this is a normal reaction they do not even need to think about.
Everyday CWL maintains the fine balance between
the need and the means to help those in need.
CWL's very existence is based wholly on this balance.
We are here to help those in need.
It's very simple.
Although the mission, the passion behind the mission is simple...
finding the resources can sometimes be a challenge.
The need is always greater.

The need. Who is the need?

This little one right here... he is the need. A baby born with laryngomalacia.
Born with a larynx that collapses in his airway, he struggles to breathe.

This is why CWL is here.
We are here to help...but we can not do it alone!
So how can you help a floppy larynx baby?

You can help by:
-signing up to be a CWL volunteer to help with
future events such as our 2nd Annual Blanket Drive Dec 3, 2011!

-Donating a handmade blanket for a floppy larynx baby
recovering from airway surgery or any other LM related procedure.

-Donating new or gently used PJ's (0-24 months) for CWL's PJ's for LM Babies Program.

-Having CWL at your next floppy larynx birthday party or special event!
Please contact our Birthday & Event Donation Coordinator Annie at Annie.Papley@Bigpond.com

-Making a personal donation to Coping With Laryngomalacia, Inc.

Every dollar counts!
44 cents sends moving saving formula coupons to LM babies in need.
$6.50 is the average cost to send a blanket to a LM baby recovering from surgery.
$25.00 gets a LM baby(whose parents can not afford it)
struggling to breathe a Nap Nanny so he/she can sleep better.
$15.00 sends 100 customized favors to CWL families participating
in the Birthday & Event Donation Program.
$20.00 helps us make educational brochures to better
educate the public on what CWL does and LM!

...anyone can change the world...

Holy Nap Nanny!

2011-07-12T13:45:00.000-07:00

The Nap Nanny's have arrived!
20 Gen 2's to be exact.
If your floppy larynx baby would like to benefit from the Nap Nanny Donation Program please contact Stephanie at CopingWithLM@yahoo.com
For more information on this program and others we offer please click here.

Note: If you are already on the waiting list hang tight!
A Email will be going out this week with more details.

Thank you Nap Nanny!
We <3 you!

Happy 1st Birthday, CWL!

2011-07-11T16:04:00.000-07:00

...our new logo courtesy of Jumping Jax Designs...
...picture courtesy of Rambling Photography, LLC...

One day post birthday I still can not believe it.
I am still in awe, truly.
In one year, a few heartfelt blog posts have turned into something bigger,
better more amazing than I could have ever imagined.

CWL has been an outlet, a safe place...an escape for parents,
families and friends all coping with LM.
A positive endeavor in the mist of
a horribly negative rainstorm.

I am humbled to see how far CWL has come since it's birth last July 10th.
How many people support this cause... how many people... need CWL.

One year ago... if you said to me... "Steph, there is a reason Seraphina has LM."
I would have started bawling like a baby and said
"no... there is no reason for something like this."

Fast forward one year and I look at CWL...
I see the CWL community..
how we are all so bonded, interwoven, understanding of each other...
I see the outside support from people who can hardly
pronounce laryngomalacia... let alone have a baby with the defect!
I see.. the good CWL is bringing to so many people's lives everyday...

And this my friends... this is the reason...
This is your proof the good really does follow the bad.
The proof that you really are only given as much as you can handle...
that there is a reason for every act under the Angels.
Proof that in times of darkness you are given a choice.
A divided road...
You can choose to let it destroy you... to knock you down.
Or you can look deep within yourself and find strength you never knew you had.

So as I sit here... wiping the tears from my face... thank you...
thank you to our donors for believing in CWL's mission,
thank you to our supporters for sharing your stories, strength and lives with CWL,
thank you to our amazing volunteers for giving up time out of your busy lives
to better someones life you don't even know,
thank you to the CWL Board & Team...amazing is the only word to sum you guys up! :)

And thank you, Coping With Laryngomalacia, Inc...
for showing me anyone really can change the world...

Happy Bday, CWL! Love, lia sophia

2011-07-05T10:48:00.000-07:00

July 10th marks the first birthday for Coping With Laryngomalacia, Inc...
and what a year it has been!
To help us celebrate, our good friends at lia sophia are hosting a
MONTH LONG online fundraising event!
10% of total sales made in the month of July will go directly to CWL.

You are invited to...

Fundraiser for Laryngomalacia

lia sophia

The worldwide social fashion experts will be helping to support children with Laryngomalacia in conjunction with Coping With Laryngomalacia, Inc.

In honor of CWL’s birthday this month, from July 1^st to July 31^st

Karisa Playter, an independent advisor for lia sophia, will be donating 10% of any purchases made from her lia sophia website to CWL.

lia sophia is ALWAYS running specials

and JULY has the best special of the year!!!

All month long customers can purchase one item at full price, THEN purchase their two MOST EXPENSIVE items at HALF price!!!

(Must be purchased in multiples of 3 to receive the special pricing)

ALSO for the first time EVER lia sophia will allow customers to buy from both the Spring/Summer catalog AND the Fall/Winter catalog

from July 11^th to July 31^st!!!

If you would like to support this great organization, please go to my website

www.liasophia.com/karisaplayter

1. Browse our beautiful jewelry online at your convenience

2. Write down the name, item number and price for each piece

3. Then simply send me an email at karisaplayter@yahoo.com with all of the information for the items you’d like to purchase, as well as your Visa, Mastercard or Discover credit card information & expiration.

4. Don’t forget sales tax and a $3.80 shipping charge will be added to your order

5. Please make sure to write “Supporting CWL” in the subject of the email to ensure that the donation will be made

*** In order to raise the most money possible for CWL, I will also be donating a beautiful, 5-piece retired lia sophia jewelry set to the person who places the biggest order with me!! ***

**Invite your friends!**

To view photos of some special lia sophia items click here.

And the winners are...

2011-07-05T10:32:00.000-07:00

The winners of the 500 Fan Giveaway are...

Toys R Us gift card-Heather Ryan-Bird

Good Start coupons- Jolly Abad

Moby Wrap coupon code-Angie Kolbaba

Ave Lee bow- Tiffany Fargnoli

Taggie Blanket- Jennifer Dunnkosky

Engraved key chain- Jessica Bennett

Engraved trinket box- Marissa Foster

Personalized bracelet- Mary Foster

Handmade newborn hat- Karen Vanhoozier

Similac coupons- Bernie Abangan

All Ribbioned Out headband- Flo Wiggins

Mary Kay set-Lily Aralar

CWL Gift Bag- Brittney Pilcher

Similac formula-Scott- Jeanie Musil

P & G coupons- Tiffany Fargnoli

Children's Medicine coupons- Angie Kolbaba

Bath set sampler- Angie Kolbaba

Custom flip flops by Bella Knot & Band- Michelle Donnelly Cataldo

All winners were randomly chosen by Random.org

All winners have 48 hours to contact Coping With Laryngomalaica to claim their prizes.

CopingWithLM@yahoo.com Subject title: prize you won

F U Anger!

2011-06-30T17:48:00.000-07:00

Everyday I force myself to concentrate on the good...and forget the bad.
To move forward with eyes wide open instead of looking back into the fogging haze.
Everyday I tell myself... do not be angry.
Take that anger and turn it into something...good.
And everyday I can not help but be ... a little...angry.
Honestly, I don't think I would be human if I wasn't angry.
If there wasn't a little voice that whispered to me over and over again...
this sucks, a lot.
Of course, the voice comes and goes...
the feelings are sometimes completely lessened by all the good I really do have in my life
... but that voice... those feelings of anger... seem to always surface.
I get angry when I hear of other moms with healthy babies..complain about their lives.
Complain about not being able to go out on a Friday night... complain about a teething baby.
I would give anything to stay home on a Friday night with a teething baby
then have to watch my 17 month old having a seizure in the middle of a play date.
I guess what it really is...
I wish I could complain about mundane things and
I can't... so that's why I am angry.

Angry that this is still happening...
as soon as I breathe... as soon I think... I have recovered... something else happens.

You have no idea how hard life can be until you have to breathe for your child.
Yes, breathe... for... your... child...
There may be nothing scarier then picking up your limp, lifeless, non breathing baby and having to suppress all your emotions, all of your fears... to breathe...for her.
There is no recovery from that.

It's hard not to be angry when something like that happens.
What is YOUR reasoning for that one?

Through this whole experience.... the anger... the hurt... and complete sadness
that this is my child's life... this is now my life... has been the hardest thing to cope with.

But I am stubborn. So very stubborn.
I refuse to let my babies grow up thinking that the good doesn't always follow the bad.
I refuse
x100

I refuse to let them see angry is the only thing that comes from a situation like this.
It certainly takes more strength and courage to be strong and NOT angry...
but I have the two best, most important reasons in the world to try my hardest.
My goal is to show them... anger can be good.
Anger can strengthen you... give you power you never knew you had... if you use it correctly.
You can take all the energy you are putting into being angry...
turn it around and put it into something positive.

Then... every time that angry voice starts again... your voice will be louder.

Avon Fundraiser Total!

2011-06-26T16:58:00.000-07:00

Our First Avon Online Fundraiser was a huge success!
Thanks to everyone who purchased Avon has raised $23.01 for CWL!

What can CWL do with $23.01 ?
-we can send approximately 4 blankets out LM babies recovering
from surgery and other LM related procedures.
-we can purchase thank you cards, support cards and educational brochures.
-we can continue to make our mission a reality!

big thank yous to Oh My Avon & Misty Hale!

Beautiful Baby

2011-06-16T10:16:00.000-07:00

I can not think of a caption...maybe because there are no words...

The winner of the Fathers Day giveaway is...

2011-06-14T04:25:00.000-07:00

The winner is comment number 5!

LM Superdad Nicholas Fargnoli!

Congrats Nicholas you just won a CWL gift bag,
Happy Fathers Day!

...an email has been sent to you...

Surgery...one year later

2011-06-11T04:30:00.000-07:00

Today marks one year since Seraphina's surpraglottoplasty.
A whole year.
I still can not believe it's been a year.
I can not believe I (and her) have survived this year.
This week leading up to the anniversary reminded me of how I felt then.
My heart ached constantly.
I thought that surgery would be the hardest thing I would ever have to witness.
One year later...I know surgery day was just preparing me for what was to come.

I sat there next to her in ICU... watching her struggle.
I remember thinking... I wish I could talk to someone who has been through this.
I wish someone knew how this felt.
Three weeks later CWL was started....

That horrible day...is proof the good does follow the bad.
Proof that when you are given the worst you have a choice....
a choice to let it destroy you or a choice to let it empower you.

Lots of smiles!

2011-06-07T13:15:00.000-07:00

Seraphina with Cali DeCaro, CWL's PR & owner of Rambling Photography.

CWL's Executive Assistant Christine Amaro's daughter Julianna--- at her First Birthday Party.
Sooo many reasons to celebrate! We love YOU Jules and your floppy larynx! :)

CWL Cafepress.com shop is now open!

2011-06-05T15:31:00.000-07:00

The CWL Cafepress.com shop is now open for business!
There are 10 CWL designs to choose from...
pick a design then pick if you want it on a t-shirt, bag, teddy bear--the choices are endless!
And the best part?
10% of sales go directly to CWL!

So get shopping! Click here.

Remember: you order directly through Cafepress.com NOT CWL.

A Floppy Larynx Birthday Celebration!

2011-06-02T17:29:00.000-07:00

Photography by: Rambling Photography, LLC
Seraphina's outfit & bow was made by: Ave Lee

...it was a perfect day for a very perfect little girl...

Toy drop off at JSUMC

2011-06-01T18:05:00.000-07:00

Today CWL donated four large garbage bags of toys to
Jersey Shore University Medical Center's PICU and Pediatric floor.
These toys were collected at our Blanket/Toy Drive this past December.
Thank you to everyone who donated the toys...
they will make many little boys & girls very happy!

Job well done!

Staying Organized.

2011-06-01T17:52:00.000-07:00

Having a baby with a health condition can quickly become overwhelming.
Between the doctors appointments, test results, hospital bills---
the paper work adds up quickly.

In order to keep organized I keep everything in this medical binder.
I received it from CHOP
the last time Seraphina was there.
It has sections for doctors information, bills, insurance stuff, treatment plans ect.
Even pockets for pens and a calculator!

I keep all of Seraphina's paid medical bills together in one folder per year and everything else is organized by hospital and test results through out the binder.

It's great for when we meet with a new doctor... I can either bring the whole binder with me or take out exactly what I need--and know where in the binder it is.

It's also very helpful for tax season and insurance questions--all the bills are in order by hospital/doctor and date so I can easily check back to see when and how I paid a bill.

As you can see... I am a little OCD about organizing but I have to say--- it took me about a year before I really got all of Seraphina's medical paperwork in order
...and once I did I felt more in control of her treatment and care.

How do you keep all of your floppy larynx baby's medical paperwork organized?

The Floppy Larynx Fairy... is MIA.

2011-05-31T18:32:00.000-07:00

Seraphina was five weeks old and the ENT had just pulled the scope out of her nose.
She was gasping for air and there was blood dripping from her nose.
I sat there, numb.

The ENT said,

"your baby has something called laryngomalacia. It will be gone by her first birthday."
and walked out the door...

Ohh... okay... that's good...that's not that bad.
I pictured the Floppy Larynx Fairy magically slipping into
Seraphina's bedroom the night before her first birthday.
The fairy shook her wand over Seraphina's floppy larynx and viola!
No more floppy larynx!
Thank you Floppy Larynx Fairy! You are the best!
I gave her a hi-5 and then we went shopping and saw Hangover 2 together.
she treated!

I left the ENT's office with a huge false sense of
"this is going to be okay...the Floppy Larynx Fairy will take care of it."

Every night I waited... I waited for her... to make Seraphina all better.
16 months later... I am still waiting.

I am starting to think the Floppy Larynx Fairy does not know where we live.
She should talk to the First Aid Squad and Paramedics because they know where we live.
Or even the medical supply company they know!
I am sure they could even give her a lift if she needed it.

Or maybe she is on vacation...a very long vacation....
she doesn't have good cell phone reception and that's why
she has not replied to my 107265383 text messages.
That's okay... I'll hit her up on Facebook.

Newsflash to all the ENT's!
there is no such thing as the Floppy Larynx Fairy
so stop tricking all of the LM Supermom's into believing there is!
because they are getting pretty p*ssed.

*thanks Marissa :) *

Smiles!

2011-05-31T18:25:00.001-07:00

You.are.amazing.

CWL Update March - May 2011

2011-05-30T16:00:00.000-07:00

Executive Assistant Christine Amaro and Founder & CEO Stephanie Hueston Paden
with mayor of Middletown, NJ Anthony P. Fiore
at Middletown Township Community Affairs Council's Spring Into Action!

Coping With Laryngomalacia, Inc. has been busy, busy, busy!
Here is what we have been up too!

March 16, 2011- CWL received a HUGE blanket donation from Blankie Depot. To read about the donation please click here.

March 16-19, 2011- New2YouKids Consignment helped CWL spread awareness by handing out 250 CWL flyers! To learn more about New2YouKids and how they helped please click here.
March 21, 2011- CWL now is www.CopingWithLM.org !

March 22, 2011- Blanket donation drop off at Jersey Shore University Medical Center's PICU. Follow by Email application was added to the website and the CWL Facebook Badge was created. Both applications can be found on the website.

March 26, 2011- BuildASign.com donated 50 bumper stickers to CWL! To check them out please click here.
March 30, 2011- National Doctors Day & 10,000 page views on the website!
April 1, 2011- PayPal Donate button is added to the website. Now you can donate safety and directly on our website!
April 4, 2011- The Contact application was added to the Facebook Support Group. This application makes it possible for members to Email Stephanie without having to leave the page.
April 5, 2011- CWL entered in the Inc.com's 20 Awesome Facebook Fan Pages.
April 14, 2011- The Review application was added to the Facebook Support Group page. This application lets members rate and write a review about CWL.
April 15, 2011- CWL's LM Awareness Picture Montage video is launched! To watch the video click here. To order a DVD click here.
April 16, 2011- LM Awareness video is posted on Youtube.com, CWL receives a heartfelt donation from Adam & Stephanie Jackson. To read more about their generous donation click here.
April 18-23, 2011- Nap Nanny Giveaway. Nap Nanny donated a Gen2 Nap Nanny to one lucky floppy larynx baby! To see who won click here.
April 19, 2011- CWL is mentioned in the Nap Nanny Newsletter.
April 25, 2011- Wonderful review from Mom Blog Network. To read the review along with others click here.
April 26, 2011- CWL had a logo photo shoot with a art major from Montclair State University. Photos to come!
April 28, 2011- CWL attended the Middetown Township Community Affairs Council's Spring Into Action! Networking event. To read more about the event click here. To read the The Monmouth Journal's article click here.
April 29, 2011- Rambling Photography, LLC photo shoot with CWL's floppy larynx baby Seraphina. To see photos and get more information on Rambling Photography click here.
May 2-7, 2011- CWL hosted it's Spring Photo Contest. Big thank you's to our LM Supermom, Kristy for her donation and help with the contest! To see who won click here.
May 4, 2011- CWL received a very generous donation of handmade floppy larynx necklaces from a LM Supermom. To see the necklaces and place your order click here.
May 10, 2011- CWL's Spring Online Fundraiser begins! To learn more click here.
May 12, 2011- One of CWL's Supermom's shares her story about life with LM. To read the story click here.
May 15, 2011- CWL posted an updated list of where the blankets from the Blankets for LM Babies program have gone. To read the list click here.
May 16, 2011- The Video tab is added to the Facebook Support Group page. This tab allows members to access all the posted videos with one click. To watch a video of a floppy larynx baby sleeping click here.
May 18, 2011- Coping With Laryngomalacia is officially Incorporated! To read more click here.
May 24, 2011- Avon for LM Mama's online fundraiser begins. To place your order click here.
May 25, 2011- CWL introduced the newest members to the CWL Team! To read more on how CWL's newest members are helping click here.
May 26, 2011- CWL hosted a Candle Vigil for one of it's floppy larynx babies, Mika. To read more about the vigil and how to help Mika's family click here.
May 31, 2011- CWL's Summer Challenge Program begins! To learn more about the program please click here.

CWL's Future:
-Week of June 1, 2011 CWL plans to do a big toy donation to JSUMC's PICU and Pediatric floor.
-June 6, 2011 will be the first Challenge Discussion from the Summer Challenge Program.
-Avon for LM Mama's Online Fundraiser ends June 7, 2011.
-CWL's FIRST BIRTHDAY is this July!
-CWL will start planning it's Annual Blanket Drive for this winter over the summer.
-500 Fan Giveaway Party!

Thank you from CWL!
The CWL Team would like to express our gratitude and appreciation to all of our sponsors, donors and volunteers! It would not be possible with ALL of you!
Because of all of your donations and support we have now sent
blankets to 4 countries and to over 11 USA states!
CWL has also added a new program called PJ's for LM Babies. To learn more about this program as well as our others please click here.

Thank you for helping us keep our mission a reality!
-The CWL Team-

Did you check it out?
CWL is now published on the Moby Wrap website!
Click here.

CWL's Summer Challenge...starts now!

2011-05-30T15:20:00.000-07:00

For most of us...summer is officially here.
After being in and out of hospitals all winter...
Fighting germs, keeping floppy larynx airways open and infection free...
It's time to sit back and relax.

Whoa... relax?
What is relax when you have a baby who stops breathing? Is it even possible?

It is.
It is well deserved and very needed.
And this summer we are all doing it TOGETHER!

Here are the rules:
Each week you need to pick at least one activity to do...for YOU!
Example: leave the kids with a sitter and get a manicure, go to bed an hour earlier, read a good book instead of panicking over the stack of medical bills.

It doesn't have to be big...but it has to be something.
I am not talking about dropping your floppy larynx baby off at grandmas
and jumping on a plane...
we are taking baby steps here people!

Each Monday there will be a Challenge Discussion so everyone can share what they did.
-first discussion will be on 6/6/11-

The Challenge will run from now until Labor Day.

The main goal of this challenge is to focus on YOU.

Candle Light Vigil for Baby Mika

2011-05-28T06:47:00.001-07:00

On May 25th at 7pm EST Coping With Laryngomalacia held a Candle Vigil for Baby Mika.
People around the world lit a candle and
said a prayer for Baby Mika and her family.

A few hours later Mika received her wings.

Our prayers and sympathy are with the Brand/Schmidt family during this difficult time.

May you all find comfort and peace.
May you feel the wind against your cheek and know it's your angel Mika's wings.

Funeral arrangements will be held on June1, 2011 in South Africa.

If you would like more information on how to help the Brand/Schmidit family
please Email Stephanie at CopingWithLM@yahoo.com

Wordless Wednesday

2011-05-25T16:35:00.000-07:00

...24 hour Holter monitor...

Avon Fundraiser for CWL

2011-05-24T12:29:00.000-07:00

CWL would like to invite you to our newest online fundraiser!

.Avon for LM mama's.

created and ran by one of our very own LM Supermom's, Misty Hale.

From today until June 1, 2011
10% of sales will go directly to CWL.

Head over to the Facebook event invite here.
and
Start shopping here!

*and don't forget to "like" Misty's Avon Facebook page!*

The CWL Team has grown!

2011-05-24T11:35:00.000-07:00

The CWL Team has grown and we are proud (and excited!)
to announce our newest members!

Christine Amaro, Board Member & Executive Assistant.
Chrissygates2@aol.com

Cali DeCaro, Public Relations Coordinator.
rambletome@gmail.com

Annie Brixton, Birthday & Event Donation Coordinator.

Annie.Papley@bigpond.com
- Birthday & Event Donation program-

Marissa Foster, Support Group Calender Coordinator.

contact info to come!

Strength to get to the top

2011-05-23T19:32:00.000-07:00

you are given the highest mountain to climb because you have
the strength to get to the top.

♥ we will get through this, Bappy ♥

Coping With Laryngomalacia, Inc.

2011-05-23T14:00:00.000-07:00

Coping With Laryngomalacia is now Coping With Laryngomalacia, Inc

under the virtue of N.J.S.A 15A 1.1 the New Jersey Nonprofit Corporation Act as of

May 18, 2011.

(cheers to the CWL Team!)

Tuesday night

2011-05-22T12:23:00.001-07:00

As most of you... Tuesday night Seraphina fell, hit her head then stopped breathing.
I gave her rescue breaths and she then went into a seizure.
A seizure like I have never seen before.
After calling 911--- the police, first aid squad and paramedics were at my house within 3 minutes.
We were brought to the nearest hospital then critical care came in and transported us to the JSUMC's Trauma Unit
(ironically it's the same hospital CWL donates too).
I am thankful and grateful for the people who responded Tuesday night.
So very thankful.
And thank you to the CWL family for your care and concern.
It truly means a lot to me (and Seraphina!).

and a big thank you to Seraphina's angel who obliviously never left her side that night...

2011 Safest Car Seats

2011-05-15T08:43:00.000-07:00

As you all know, I had been on the hunt for the safest car seat for my floppy larynx baby and non floppy larynx baby. Unable to make a choice, I bought a 1 month subscription to Consumer Reports to help with the decision. Once finding out that the car seat my kids ALREADY have is rated number 1 for 40lbs and under. I decided to share the information with all of you.

Here are the top 3 car seats out of each category:

Infant Car Seats
22lbs and under
1.Chicco Key Fit scored overall 79 out of 100 with a VERY GOOD crash protection
2.Maxi Cosi Micro scored overall 67 out of 100 with a EXCELLENT crash protection
3. The First Years via 1450 scored overall 67 out of 100 with a VERY GOOD crash protection

Don't buy-safety risk!!!
Orbit Baby Infant System.

Convertible Car Seats
40lbs and under
1.Cosco Scenera scored overall 64 out of 100 with a EXCELLENT crash protection.
2.Evenflo Symphony scored overall 62 out of 100 with a VERY GOOD crash protection.
3. Graco Comfort Sport scored overall 59 out of 100 with a VERY GOOD crash protection

Convertible Car Seats
Greater than 40lbs
1. Evenflo Triumph Advance LX/DLX scored overall 70 out of 100 with EXCELLENT crash protection.
2.Evenflo Momentum 65 Deluxe scored overall 69 out of 100 with VERY GOOD crash protection.
3.Evenflo Symphony 65 scored overall 65 out of 100 with VERY GOOD crash protection.

Note: ² Some Evenflo Triumph Advance seats manufactured prior to 12/4/2008 exhibited cracking in simulated crash tests with a toddler-sized dummy in a rear-facing position. Although some of these cracks resulted in the shoulder belt leaving the seat's belt path, the seats still would have scored 'good' for crash protection. Evenflo has since modified the seats at issue and samples of the Triumph Advance seats manufactured from 12/4/2008 forward did not crack in our tests.

*CWL is not responsible for your childs car seat safety. This post is for general use ONLY.

Where the blankets go

2011-05-15T07:09:00.000-07:00

Our first donation of blankets was to
Jersey Shore University Medical Center located in
Neptune NJ on October 15th, 2010. Since then we have sent blankets to
LM babies throughout NJ and all over the world.

Australia

California

Connecticut

England

Florida

Illinois



Iowa



Kansas



London



Michigan



Missouri

New Jersey
-Jersey Shore University Medical Center

Northern Ireland

Ohio

Oregon

South Africa

South Carolina

South Dakota

Vermont Washington

*to read about how CWL is changing the world, one blanket at a time...click here.

Karen & Liam's Story

2011-05-12T06:09:00.000-07:00

Karen & Liam's Story

Liam, my youngest and only LM baby, was born at 36 ½ - 37 weeks due to my pregnancy induced hypertension. He was born not breathing well and was diagnosed with respiratory distress syndrome (left lung was under developed). He ended up spending 9 days in the NICU. When we took him home, he had a stridor that we were told he would loose in a few days. Liam’s first pediatrician told me that he had Tracheomalcia and would grow out of it. Each week we were back in her office, sometimes twice or three times a week with me complaining and pleading with her that he could not breathe. I tried breastfeeding from the start and always had to supplement with formula. My milk never really did produce enough. They said the stress of the NICU probably hurt me, but I was on two different supplements and a prescription trying to get my milk supply up. Liam had trouble feeding from the start. He would just get so tired and once he went to sleep, there was no rousing him to finish. Sometimes we would take a ½ of an ounce and pass out. The pediatrician did diagnose him with GERD, so we switch formulas (due to allergy/intolerance) and put him on Zantac. That is when I quit breastfeeding and he went to formula 100%. I even went as far as to call up a pulmonologists’ office, on my own one day, asking if I needed a referral (was told yes). When I called for the referral from the pediatrician, I was told that he was not “bad enough” to see one. However, after the failed Zantac, my husband called and demanded a referral to a GI doctor, which was given quickly.

At about 12 weeks old, he met the GI doctor who heard him take a bottle and see how hard it was for him and promptly asked who our pulmonologist was. I had to laugh. When I explained the situation, he told me that he would take care of it for me and made Liam an appt with one and ordered a swallow study and barium swallow. (BTW: we have NEVER been back to that first pediatrician) The results of the swallow study and barium swallow showed he had problems with the suck/swallow motion, but no aspirations and referred us to an ENT. The pulmonologist said that everything looked good from their perspective and that his lung that was under developed at birth was 100% perfect now. Yay! J

Two weeks later, we met the ENT. As long as I live I will NEVER forget that appt. My mother went with me. My husband was always unable to accompany us to the appts due to school, and this was the first time I was not alone. Vanderbilt Children’s Hospital is a teaching hospital so before actually see and meeting the ENT, we met a couple of nurses, a PA, and a couple of medical students. After watching Liam’s barium swallow video, we met. Little did I know that this man would become my best friend and lifesaver (LITERALLY!!) Dr. Wootten did an in the office scope and showed us the extra tissue above my baby’s larynx. He told me that he had Laryngomalacia (not Tracheomalcia “which can be confusing to the untrained ear,” he said) and told me that he needed surgery due to his failure to thrive. When I left that appt, my head was spinning. FINALLY I knew what was wrong with my child and someone was going to help me make him better. After 14 weeks of watching my child struggling to eat and breathe….I knew how to help him. At 16 weeks he had surgery. Went great! However, when placing his breathing tube in during surgery, he was found to have Congenital Subglottic Stenosis. This is narrowing BELOW the larynx. Congenital because he had never had a breathing tube while in the NICU. Most babies get it from prolonged use of the breathing tube and scar tissue is formed. We were told that he was a grade 2 (about 50% narrowed) and could possibly have another surgery – this time a MAJOR one requiring a graft to be put in and months in the hospital. However, he had a great night in the PICU and was allowed to leave the next morning.

A couple of weeks later, Liam had his first appt with his new pediatrician who was concerned about our breathing issue questions (he was having blue spells around the mouth) and sent us to the emergency room. There his ENT met us and we found out he had his first cause of croup. Very mild. Croup is something we were told to watch out for with Liam. Due to the narrowing of around his larynx, once it is inflamed and swollen, problems can arise very quickly. We were told that if he gets it a lot, surgery (the BIG one) would be inventible. At this point we were seeing the ENT ever two weeks. Liam was better than before, but not better enough to say that he was doing good. Still had the stridor, although not 100% of the time like before, and was still having blue episodes around his mouth.

At 22 weeks, Liam had a bronchoscopy along with some cultures from the GI and pulmonologist taken and also had a ph probe wire inserted into his esophagus to measure the ph levels and reflux. Due to the many tests, we had to (unexpectedly) stay over night at the hospital. The ph probe was very crappy. I had to track every time he ate and was position he was in, if he got the hiccups or coughed….they finally came the next afternoon and took it out. The ENT knew we were about to go out of town, in fact 2 days after leaving the hospital we were scheduled to go on a plane to Maryland and see my husband’s family and introduce Liam to everyone. The ENT said that it would be fine, but when we came back, he would take out Liam’s adenoids because they were already too large. So, next week when we returned, went back to the hospital for surgery/procedure # 3. This time we ended up staying 2 nights at the hospital. He refused to eat.

Since then things have slowed down and have gotten to be somewhat normal. At 8 months, Liam was placed on an apnea monitor at bedtime to see if he was having any episodes…he is. So a sleep study was scheduled at took place at 11 months. As it turns out Liam has Central Sleep Apnea with oxygen levels dropping as low as 69% while in REM sleep and 89% in NREM. We are currently waiting to see if he will be put on oxygen overnight. An appt with a sleep neurologist is scheduled for next month.

As far as the GERD, that is a HUGE headache! He has been on Zantac, Nexium packets, and compounded Prilosec. He has been on the compounded Prilosec and Zantac daily for a while now with many increases. If we even miss one dose, Liam pays for it for a couple of days. I am very afraid that they might be considering the Nissen surgery.

Liam is 12 months now. He started crawling at 10 ½ months and just recently pulling up. He has switched to milk very well (I think he likes it better than formula!) He is also starting to talk and say a few words.

Even with two surgeries looming over our heads, we are still pretty optimistic. We hardly hear the stridor anymore. Only when he is crying hard or crying while tired. He still has some trouble with chunky foods at times and gets choked easily.

I know we all struggle at times in our lives – it is a part of life they say….but I still hate it that my sweet baby Liam had to start out in this world struggling. Struggling to breathe, struggling to eat, struggling to develop and grow. But hopefully, it can only get better from here.

Spring 2011 Online Fundraiser!

2011-05-10T17:14:00.001-07:00

Our Spring 2011 Online Fundraiser is here!

Be sure to check it out, spread the word and help out a great cause!

You can find more information here.

You Are Invited!

2011-05-10T11:37:00.000-07:00

The CWL support group is so close to reaching 500 fans!

It is amazing to see the support... strength...
and sense of community within this group.
Every morning when I head over to the CWL Support Group
to post the Question of the day, I am usually blown away
by all the supportive comments and virtual hugs...
Not only by mothers but fathers, grandparents and friends...
all showing support and love to their floppy larynx babies.
I am honored to be a part of this and I feel like it's time to acknowledge all of YOU!
And what better way to show someone you care then by throwing a party!

So CWL invites you to our 500 Fan Giveaway Party!

When: whenever we reach 500 fans.
Where: right on the Facebook CWL Support Group page.
How it will work: CWL will post a Giveaway Party album on the FB page along with a description of each item. To enter simply comment under each item you want with your Email address.
At the end of the party CWL will use Random.org to select random winners!

How to donate: anyone can donate to this event.
Examples of items: gift cards, any handmade items--calling all WAHMs!...ect
All donations need to be age appropriate for everyone and the donor is responsible for shipping instructions...example: does the winner pay for s&h or the donor?
Interested in donating?: Email Stephanie at CopingWithLM@yahoo.com.

DVD's are here!

2011-05-09T13:06:00.000-07:00

They are here and are ready to be shipped to you!

How to purchase a LM Awareness DVD:

Please send $15.00 (anywhere in the USA) to CopingWithLM@yahoo.com via PayPal as a GIFT.
5 cents from each DVD sale will go to CWL.

If you are purchasing from outside the USA please Email Stephanie at CopingWithLM@yahoo.com for shipping prices.

Remember: Grandma and Grandpa will want a copy too!

Multiple DVD orders:
(anywhere in the USA)
2 DVD's: $25.00 total
3+ DVD's: $ 40.95 total
(add $10.00 for each additional DVD)

Note: If you are the waiting list for a LM necklace and
would like your DVD and necklace shipped together please let Stephanie know
prior to paying.

Mother's Day

2011-05-08T18:00:00.000-07:00

We have come a very long way since last Mothers Day, haven't we?

Thank you Seraphina Anne, for making me stronger than I ever thought I could possibly be.
For teaching me that sometimes life does not go as planned...
but it goes the way it's supposed too.
I am a better mother and person because of you
and that damn floppy larynx!

*Happy Mothers Day to all of our floppy larynx mama's!*

And the winner is....

2011-05-07T06:16:00.000-07:00

And the winner of the Sping Photo Contest is:
(drum roll please...)
...JAYKE!

Please contact Stephanie at CopingWithLM@yahoo.com on how to obtain your prize!

Thank you to everyone who entered!
Yay Spring has finally sprung! :)

How to Cope

2011-05-05T20:23:00.001-07:00

Before I started CWL I always used to wonder something... okay I still wonder... how are you suppose to cope with a baby who stops breathing?
How?
Please tell me because I would love to know.

I remember when Lilli was younger. I would watch her breathe. I loved.watching.her.breathe. I would put my hand on her chest in the middle of the night and feel whole. Feel like--know-- I was blessed x100. There was nothing more satisfying to me...
to just watch her do something that was so perfect.
So natural. So peaceful. It was comforting to say the least.
So what do you do when that satisfying,peaceful, blessed feeling is ripped away from you?
When fear and worry replace something that was so the complete opposite of before.
How do you watch your baby stop breathing... and be okay?
And I don't just mean okay... I mean really okay.
Seraphina has stopped breathing in my arms.
She has stopped breathing in the car while I was driving, alone.
She has stopped breathing on the Pediatric floor and I stood there screaming for the nurses.
She has stopped breathing to the point where I was not sure if I was going to get her back.
She stops breathing...every...single...day.
Does it get easier or am I just numb?
I thought about this recently... she fell and needed mouth to mouth again.
After I held her in the rocking chair and tried to explain to my very upset two year old that "Bappy" was okay.
I stopped and thought... she is okay, now... but am I?
Am I really okay or am just I so numb that... I don't know if I am okay or not.
In time everything gets easier... it's just human nature... the way life evolves... but does seeing your baby stop breathing... really get easier?
Is it suppose to get easier? What about it actually gets easier?
I keep waiting for these answers.

Mother's Day Suprise!

2011-05-04T16:45:00.000-07:00

These necklaces were donated by Michele Thompson, a LM mom from Freehold, NJ.
They are beyond beautiful and are such a great way to show support for your floppy larynx baby.

Since Michele was kind enough to donate these necklaces---at this time--- there will be no charge for the necklaces... CWL only asks you pay shipping $4.95 for anywhere in the USA... if out of the USA please contact Stephanie---CopingWithLM@yahoo.com--- with your mailing information for shipping prices.

We only have 7 necklaces
- 4 I <3 someone with a floppy larynx
-3 LM Supporter

I anticipate more than 7 responses to these necklaces... don't worry...
you will be added to the wait list!

To purchase:
Please Email Stephanie at CopingWithLM@yahoo.com with your mailing address,
PayPal Email & necklace desired.
--subject title: MD necklace--

*LM mothers get first choice*

Happy Mothers Day to an amazing group of strong and beautiful mothers.

Party Donation Cards

2011-05-02T18:16:00.000-07:00

Recently I have had several parents contact me about donating to CWL in lieu
of party favors at their LM baby's birthday parties.

Here is some information if you are interested in donating to CWL
at your next floppy larynx birthday party.

-Contact Stephanie at CopingWithLM@yahoo.com with
party date, theme, birthday boy/girl's information and mailing address.
---Subject title: Birthday donation---

-CWL will make donation cards and ship them directly to your house.

-After the party you can donate directly on the CWL website or send a check.

Other ways to support CWL and celebrate your floppy larynx baby!

-Ask guests to bring a handmade blanket to the party instead of a side dish.
Each blanket will be donated to a LM baby recovering from airway surgery in ICU.

-Purchase I <3 someone with a floppy larynx bumper stickers and give them out as favors.

-Purchase a LM Awareness Picture Montage DVD and play it during the party.
Not only will you help spread awearness but everyone will be able to see how strong your pint-sized power house really is!

Note: at this time donations are not tax deductible...but they soon will be :)

Spring Photo Contest!

2011-05-02T18:01:00.000-07:00

We sure do love giveaways and contests here at CWL.

But then again, who doesn't?!?

Here are the rules and information about our newest contest.

-Post a spring theme photo of your LM baby
(pictures w/the Easter Bunny, playing in the park...ect)
to the CWL wall.

-Ask your friends & family to "like" CWL and then "like" your picture.

-The photo with the most likes by Friday May 6th---WINS!

Note: The winner will be announced Saturday morning!

But what do you win?

Winner gets his/her choice of sippy cup from Target or headband
from Bella G's Headbands & Hats.

Big thank yous to Bella G's Headbands & Hats and to Kristy for your donations!

Spreading LM Awareness through out Middletown, NJ!

2011-04-30T17:55:00.000-07:00

Board Member/Head Volunteer, Christine Amaro &
CWL CEO/Founder, Stephanie Hueston with mayor of Middletown, NJ Anthony P. Fiore

Middletown Township Community Affairs Council who planned the Spring Into Action!
Networking Event at the Middletown Arts Center in Middletown, NJ.

Christine spreading LM Awareness with one of CWL's educational flyers.

On Thursday April 28, 2011 CWL attended the 3rd Annual networking event held by Middletown Township Community Affairs Council.

It was a great night to meet and network with local people and their business while spreading LM awareness!
Everyone we talked to had NO idea what LM was...
but I am proud to say that after speaking with Christine and I...
everyone was well educated and informed about LM and CWL! :)

Some of the local people and businesses we networked with included:
Mayor of Middletown: Anthony P. Fiore
Middletown Arts Center director Maggie O'Brien
A Bounce Above, LLC
The Bridge of Books Foundation
eBSTC: Al Siano
Whole Foods Market, Middletown
Avon Products, Inc: Donna Prawetz
Suzi's Sweet Shoppe
Northern Monmouth Chamber of Commerce: Paul Morris
Mary Kay Independent Beauty Consultant: Ashley Quelliman
Thomas Finnegan Land Surveying
M&S Waste Services

What I now know...

2011-04-28T11:04:00.000-07:00

Everything in life happens for a reason.
If you want to believe it or not.
Every situation, task, experience has a lesson we must learn.

Thanks to LM... I now know a lot. ;)

*I now know, perfection is defined by the Angels-not me.
*I now know, the hardest thing you can do in life is accept there is something not 100% right with your baby.
*I now know, life may not go the way you want it to... but it goes the way it's supposed too.
*I now know, it is possible to turn something that could have destroyed me into something that empowers me.
*I now know, sometimes I have to ask for help.
*I now know, I can leave Seraphina...and she will be okay. And so will I.
*I now know, life does not come with a "how to" book...
*I now know, people deal with a child's defect... differently. and I use that word loosely.
*I now know, sometimes you have to yell before someone will listen.
*I now know, every breath is a miracle...

Pictures by Rambling Photography, LLC

2011-04-28T10:29:00.001-07:00

Do you like what you see?

These photos were taken by Cali DeCaro...mom, CWL PR Queen, blogger of Ramblings from CaliLand and momtrepreneur of Rambling Photography, LLC.

Of course, I HIGHLY recommend Cali.
She is professional, super easy to work with and beyond talented.

Rambling Photography, LLC focuses on natural light photography and their philosophy is, a picture should be beautifully taken...not beautifully edited.
(agreed!)

And do you want to hear the best part?!?
Rambling Photography, LLC LOVES floppy larynx babies!

If you and your floppy larynx baby live in the Monmouth County, NJ area and would love some shots done by Rambling Photography, LLC... you can!
Cali is offering a $40 discount off your next photo session when you mention CWL!

Contact:
Rambling Photography, LLC
RambleToMe@gmail.com

Note: These pictures are Copyrighted by Rambling Photography.
You do not have permission to print/copy/edit these photos in any form.
If you want photos that badly---set up your own photo session with RP!

And the Nap Nanny winner is....

2011-04-23T05:16:00.000-07:00

The winner is Tara!
Tara said: I follow CWL blog

Congrats Tara!

Please Email CWL (CopingWithLM@yahoo.com)
with your mailing information and we will forward it to Nap Nanny.

Thank you to everyone who entered!
And thank you to Nap Nanny for sponsoring this giveaway!

DVD orders!

2011-04-21T12:48:00.000-07:00

Coping With Laryngomalacia is now accepting orders for the
LM Awareness Picture Montage DVD.
If you have yet to watch the video, click here.
The deadline for orders is April 28th.
DVD's are $10.00 each plus $5.00 to ship in the USA.
Please Email us at CopingWithLM@yahoo.com and we will send you an invoice for your order.

Remember...Grandma & Grandpa will want a copy too!

Endo, miracles and one little foot.

2011-04-21T11:25:00.000-07:00

...Seraphina at 10 weeks old...

Both my babies are miracles.
There is no question about it.
If you look up miracle in the dictornary ...both my babies picture will show up.

For any woman with Endometriosis. You know exactly what I am talking about.
Not to say, babies born to mothers without Endo are not miracles.
They are.
But when you need surgery just to have a shot at doing something that
is supposed to be so very natural...
You appreciate that little pink plus sign a whole lot more :)

Our infertility doctor had warned us, getting pregnant again (even after surgery) was probably not going to happen unless I had AUI or IVF since the Endo has damaged my ovaries and the lining of my uterus. I believe my odds at that point were less than 5%.
Once again, my husband and I held on to every ounce of Hope we had... and agreed... if we were meant to have another baby. We would. Simple as that.

Five months later, the little pink plus sign was oh so very prominent.
Seraphina was here.
And she wanted EVERYONE to know.

I began my high dose of Prometrium to lessen my miscarriage rate...even with Prometrium 2x a day I had a better chance of miscarrying than actually ever holding my baby in my arms.
Talk about needing Faith.

Then one morning early in the pregnancy, I was in the shower.
And I started bleeding.

My heart fell into my stomach.
No...no...this is not happening.

I looked down.
More blood.

No.

Little did I know... this would be the first time of many times I would have to ask the Angels not to take Seraphina away from me.

I immediately called my mother.
Then the on call OB and my husband.

My husband met us at the doctors office.
I was sick to my stomach.
All I could think was...
no...I need this baby.
She needs me.

The doctor started an ultrasound.
And there she was.
The smallest outline of life...kicking and jumping away.
She was fine.

Thank you.

The doctors concluded it was probably Endo actually falling out of me
because it happened through out the pregnancy.

It's amazing to me.
How something... the size of a lima bean can be so tough.
The will, the need to survive can be so strong.
Her strength was quite apparent that day.
She was not going anywhere.

Then...

A few months into the pregnancy I had horrible pain on my left side.
I knew my placenta was on that side so I thought...for sure... my placenta was detaching.
I ran to the OB office and the doctor put the ultrasound on my belly, where the pain was.
OUCH! I literally had tears in my eyes...the pain was unbearable.
The doctor started laughing.
What? Why are you laughing?
My placenta is falling off!

She said, look.
I looked over at the screen...
And there was Seraphina's little beautiful foot...pressing FIRMLY on my uterus.
I could not believe it.
For the rest of the pregnancy I kindly asked Seraphina to find a new position but she continued...
the pint-sized powerhouse that she is.
She was telling me..."toughen up mom. we have a long bumpy road ahead of us!."

P.s... does it even hurt when you placenta detaches?!?!

Help! I have a floppy larynx!

2011-04-19T17:37:00.000-07:00

After one our LM moms Marissa, posted a newborn shot of her floppy larynx baby... who obviously... at minutes old, was having trouble breathing...I decided to find Seraphina's newborn photos to see if her LM was really present...at birth. The answer? YES.
Honestly, looking back at these photos makes me kind of sick to my stomach. To think... my baby was visibly having trouble breathing and everyone's main concern was washing off her vernix.

just born...not breathing.

in the nursery...retracting.

still retracting...NOT congested!

...she may have one hell of a floppy larynx...
but she is perfection in my book...
One day old...snoozing on Mama after a nursing session.

Nap Nanny Give-a-way!

2011-04-18T03:44:00.000-07:00

Nap Nanny's are literally perfect for LM babies.
They keep baby at a 30 degree angel which means that floppy larynx stays
out of their airway...and it helps keep the reflux stay down.
Then EVERYBODY SLEEPS!
(Seraphina is 15 months and STILL sleeps in hers.)

Well, I have some GREAT news!
Nap Nanny is giving away one Nap Nanny to a lucky floppy larynx baby!

Here are the rules:
1.Contest is open from Monday April 18, 2011- Friday April 22,2011 at 9pm.

2.Entries must be completed by the parents of/grand parents of
a floppy larynx baby... in other words...
this Nap Nanny is only going to a LM baby!

3. Up to 4 entries per person.

Here is how to enter:
1. Follow (must be a new blog follower) the CWL blog,
leave a comment saying you did on THIS blog post- 1 entry

2. "like" Nap Nanny on Facebook, leave a comment on THIS blog post saying you did-1 entry

3. Follow Nap Nanny on Twitter, leave a comment on THIS blog post saying you did-1 entry

4. Post this on your Facebook page:

Head over to Coping With Laryngomalacia!
They are giving away a Nap Nanny
to one lucky floppy larynx baby!

Be sure to tag CWL and NN for the entry to count.
Leave on comment on THIS blog post saying you did so.

The winner will be chosen via Random.org
and announced Saturday morning.
Nap Nanny will directly ship
a brand new Gen2 sage color Nap Nanny to the winning
floppy larynx baby's house!

Note: Contest only open to USA residents ONLY
-sorry-

In lieu of...

2011-04-17T19:38:00.000-07:00

On Saturday April 16th, 2010... my cousin Adam
(pictured above with Seraphina)
married his best friend.
Him and Stephanie have been together for...
literally forever...and although we are now legally family...
I have always considered her family.
One of my bestest friends.

As I sat down at the reception table my sister said... did you see this?
And handed me the table number display.
On the back there was a blurb about CWL and a note saying:
"in lieu of wedding favors we have made a donation in your name to
Coping With Laryngomalacia."

Tears...filled...my...eyes.

Words can not express how thankful, happy and appreciative I am.

With their donation we will be able to hand out education flyers at the
April 28th Networking Event at the Middletown Arts Center in Middletown, NJ.

And we will be able to start our new project...apnea monitor/pulse ox friendly pj's
for our floppy larynx babies.

Congratulations and best wishes Adam & Stephanie!
<3 Love you both! <3

LM Awareness Picture Montage!

2011-04-15T17:43:00.000-07:00

Finally!
The long awaited LM Awareness Picture Montage is here!

Want to see it? Click here.

Please "share", "like", email and pass on this video!

Again, thank you to everyone who submitted photos.
It is WONDERFUL to see all of us- floppy larynx parents- coming together.

Job well done!

Ava Lee Bowtique

2011-04-14T17:46:00.000-07:00

There is a perk to having little girls.
THE ACCESSORIES!

Recently I came across a new Facebook page called Ava Lee .
I was very impressed with their work and started shopping immediately!
Not only are Ava Lee's accessories super cute, well made and
awesome...but they are affordable!
(and that is a huge plus in my book!)
The creator of Ava Lee, Jamie Huff is super nice and easy to work with.
And guess what?!
She loves floppy larynx babies!

Mention this blog post and receive FREE SHIPPING!

P.S. not only does Ava Lee make bows but they make pony o's, head bands, clips and tutu's
(she is making Seraphina's tutu for her Happy 1 yr -3 months Birthday party!)
can we say super fabulous and talented?!?

First Floppy Larynx Birthday Party

2011-04-13T09:59:00.000-07:00

Lilli's First Birthday extravaganza

The First Birthday. It's a big deal. Not only have you kept your baby alive, fed, diapered and clothed for an ENTIRE year..but you have somehow survived one year straight of not sleeping.
Who knew it was possible!?

L's First Birthday planning started approximately the day she turned nine months. Or if we are being totally honest... I believe I started planning the day after her Happy Unbirthday Party... (what? yes.. I threw her a Happy Unbirthday Party the day she turned 6 months old. There was a cake --made by me with a huge 6 on it--, gifts and the people who adore her as much as I do were there...).
Her --real-- first birthday party was a HUGE backyard BBQ at my parents house--Pooh Bear theme. 70 guests,handmade bee's and even life sized, hand-painted Pooh characters lined the fence. The night before the party my sister and I filled about 100 plastic bear containers with honey and wrote "Happy 1st Birthday Lilli." on them... it was out of control to say the least.

I was already 13 weeks pregnant with Miss S but it was L's day... she deserved a huge hoorah!

It was a great party... exhausting...but great.

So... Seraphina has been a year old for three months now...and the only thing we have done is ice cream cake and some pictures. I have not even taken her to Sear's for her First Year photo shoot. Her birthday dress hangs in her closet with the tags still on...the shoes she has already grown out of...but never worn. I am a horrible mother. I feel like I have cheated her. That I have let this mess of floppy larynx run--ruin-- our lives. It's not like I didn't try to plan a party. I did. Then I stopped because... being in and out of the hospital. Not knowing exactly what was going on... It was to much (for me...not her...).

I concentrated on caring for my baby and put the party hats away for another day.

My Plan B was to have a huge party after the sleep study results... because THOSE sleep study results were supposed to tell us what was wrong. Well...the sleep study has come and gone...the results have told us nothing more then we already knew...and my baby still has not had icing smeared across her perfect little face.

What am I waiting for? Why is this so hard? I don't know. I think a part of me does not want to accept that my baby has been through what she has been through in her first year of life. If we have a party. If we have a photo shoot.It is all real. Instead of looking back and seeing all the milestones she has reached and mastered.
I will be reminded... reminded of something I try to forget...everyday.

Since the sleep study "results"...since Friday...Seraphina's last seizure. I realized something. Nothing is going to change this. I can wait for a million test results. I can never leave her side. I can not throw her a party. No matter what. She will STILL have a floppy larynx. She will STILL stop breathing. She probably STILL will have seizures.

And she will STILL be living.
She will STILL be my little girl...with her crazy red hair and a big tooth grin.

So instead of letting her first birthday remind me everything that has happened to her...it is going to remind of everything she has gotten through. Every smile she has made. Every ounce of strength this baby has. Every milestone reached. Every word spoken. Every perfect baby belly laugh. She.is.amazing. and it's about damn time I celebrate her...for being her...
I celebrate her and that floppy larynx!

*invitation to follow*
:)

Disclaimer

2011-04-12T13:37:00.001-07:00

Disclaimer

Medical Information and advice:
Any information posted on the CWL website and Facebook Support Group is not intended to replace or override any doctor's diagnoses and/or treatment plans. CWL does not diagnose, medically treat or care for any individual associated with CWL. Should you have ANY concerns regarding the health of yourself or your floppy larynx baby please contact your doctor immediately.

Pictures and content:
All pictures and content posted by CWL on the CWL website and Support Group is copyrighted intellectual property of Coping With Laryngomalacia, Inc.
Printing/posting/coping/pasting/sharing ANY and ALL of CWL's copyrighted property without permission is punishable by law.

Everyone at CWL works very hard to provide support, strength and education for all of our members. We ask that you please be respectful of our policies so we can continue to make
our mission a reality!

Note: By joining the Facebook Support Group, donating to CWL or participating in any activity that is associated with CWL---you are agreeing to this disclaimer.

Sincerely, The CWL team

Becoming you...

2011-04-10T18:23:00.000-07:00

...what a journey nine months really is...

...You...

2011-04-09T18:11:00.001-07:00

You are here for a reason.
Out of all the possibilities...
Out of all the choices I needed to make in order to have... you.
You...as you are.
Everything was in line so you could...be.
One different choice and you would have never been...
I can not imagine my life with out you.
You were created the way you are supposed to be.
Most days... I find myself trying to change it.
Trying...very...hard to make it go away.
Your floppy larynx... is you.
And everything that goes along with it... is you.
If I could go back in time...and make all those choices again so you could be... I would.
I would in a heartbeat.

I love my bumper sticker!

2011-04-07T17:52:00.000-07:00

...I love my bumper sticker!...

Wordless Wednesday

2011-04-06T09:11:00.000-07:00

...night before Seraphina's supraglottoplasty...

Tell Inc.com CWL is AWESOME!

2011-04-05T10:25:00.000-07:00

Calling all CWL supporters!

Head over to Inc.com's website and tell them why
CWL's Facebook page is awesome!

Be sure to "share" this on your personal FB so all of your friends
can show their support and love for floppy larynx's!

LM Supermama=Avon Sales Rep

2011-04-04T10:39:00.000-07:00

CWL is proud to inform you that one of our very own LM supermama's Misty,
is now an Avon Sales Representative!

Who said you can't care for a baby with a floppy larynx and sell fabulous lip gloss
all at the same time?!?

Head over and "like" Misty's personal Avon Facebook page for the latest deals,
products and offers!

Avon is currently offering a great deal on direct shipping.

Best of luck Misty!
We will all be supporting you :)

Some comic relief!

2011-04-03T18:09:00.000-07:00

This has nothing to do with LM but I thought it was pretty funny and very true ;)

I stumbled over this at EcstaticallyPregnant

Wishing for Peace

2011-04-02T18:44:00.000-07:00

Someday's I wish for peace...everyday I wish for peace. I find myself day dreaming about the past a lot. The days when things.were.easy. Things.were.not.scary. Life.was.simple.
Through this journey I have kept Hope that things will ... one day... return the way they were. That all of this will be something we had to go through and we went through. And we moved on.

And with each day that passes I find myself gripping tightly to that Hope... because I feel like it is slipping right through my fingers. That simple life I once I knew. I will never know again.

Everyday. I wish for summer. Once it is summer... things will have to calm down. They will have to get better. Will they? Or will it just.be.summer?

Just as much as I wish for peace... I wish for the fear to go away. I dream of the days I lived before Fear came into my life. Everyday I battle fear. Fear that my baby will stop breathing. Fear of watching her struggle to breathe. Fear of hospitals. Fear of watching her have another seizure. Fear... that this will never change. That this... will be forever... and that I will not have the strength to keep going.

Each day we are not in the hospital.
Each night we get through with out many alarms.

I am grateful. I am thankful.

But I will always wish for peace... I always will.

CWL's Donate Button is here!

2011-04-01T17:37:00.000-07:00

Want to donate to CWL?
Now you can and it's SUPER easy!
Just click the Donate Button on the left hand side of the website
and ta-da! You can just helped another LM baby!

Where is my donation going?
-to pay for postage to send out blankets out of state.
-to purchase educational flyers such as the ones that were handed out at the New2YouKids sale.
-to purchase support cards which are tied to the blankets and given out at doctors offices, hung up on community boards...ect.
-our annual $10 website fee.

Because of YOUR donation we are able to continue making our mission a reality!

Please note... donations are NOT tax deductible at this time.
They will be within 2-3 months.
CWL is ALL volunteer organization.
All money raised goes directly to CWL and it's mission!

...thank you...

Picture Montage Information

2011-04-01T04:36:00.000-07:00

CWL is working on a new project!

We are putting together a picture montage video for the CWL website.

What we are looking for:
Any pictures pertaining to LM:
hospital stay pictures,
pictures with their doctors,
pictures of baby sleeping with his/her monitor on...ect

Wanted by:
Friday April 15th.
Each LM baby is allowed to submit 3 photos to CopingWithLM@yahoo.com
Please include your baby's name along with his/her age when the photo was taken.

Note: please send photos as a Jpeg file attachment.

Thank you!-The CWL team

EcoBabyBuys Give-a-way!

2011-03-31T09:06:00.000-07:00

Who doesn't love a chance to win free stuff?

Head over to the EcoBabyBuy's blog and enter to win a
beautiful Multicolor Baroque Necklace by Hazelaid.

there are a few ways to enter buy hurry!
The contest closes on:

April 6th, 2011 at 9 am EST

*Tell them Coping With Laryngomalacia sent you!*

PS. I have purchased from EBB before and they have the BEST customer service!

A floppy larynx sleep study

2011-03-30T16:59:00.000-07:00

The day finally came.
Sleep study day.
Our second...third...forth? attempt at a pediatric sleep study
with a vEEG for Miss Seraphina.
After our last--failed--attempted at out local Children's Hospital here in NJ...
Seraphina's doctors thought it would be best to meet with
a neurologist who specializes in sleep disorders at CHOP and go from there.
After meeting with the new doctor about three weeks ago he said a sleep study was needed before he could make a Dx.
And we NEED a Dx.
I NEED to know what else is going on with her other than the LM.

So we waited... and then day finally came.

As we drove into the CHOP parking garage all those
feelings I have tried my best to ignore came to a surface.
I used to hear this and that about CHOP before I had Seraphina...
but it was always someone's baby... not mine.
No, my babies do not need CHOP.
As I walked through those doors... the hospital smell hit me like a ton of bricks.
I could not believe... my baby needs CHOP.
How did we get to this point? Why are the Angels letting us get to the point?
As I passed other parents in the hall way one thing came to my mind...
We are all here because of our--sick-- babies.
We are all here because we still have Hope.
And although that Hope may be small.
It may be covered with fear, exhaustion, anger, questions...
it is still there.
And somehow it is able to shine through.
It is able to overcome all obstacles.
It is able to fight.
And then conquer.
Again.
And again.

So I put on my armor and asked the Angels to watch over Seraphina...
to hold her little hand as my husband and I held her down while the
techs put every wire ever created on my child.

I sat there. Watching her sleep.
Then...
Seraphina's stridor became SO...very... loud I could barely hear the TV.

I turned to my husband and said....
"that damn laryngomalacia."

BuildASign.com bumper stickers are in!

2011-03-26T10:26:00.000-07:00

Bumper stickers are in!

CWL would like to thank BuildASign.com for their generosity with these stickers.
I highly recommend BuildASign and you can be sure CWL will be using
them again in the near future!
Not only do they make fabulous bumper stickers but they also make
magnets, banners, license plates and much much more!
Their costumer service is by far the best I have ever dealt with--and I truly mean that.
You can click the link above to shop their website or click their
button on the right side of the CWL website.

We love BuildASign and we are sure you will too!

*If you would like a FREE
I love someone with a floppy larynx! bumper sticker
Email Stephanie at CopingWithLM@yahoo.com*
--subject title BUMPER STICKER--

A note from CWL

2011-03-25T11:12:00.001-07:00

Coping With Laryngomalacia's mission is to provide support
and strength for parents, families
and patients who are coping with LM.

All the information, links, Questions of the days, polls and pictures are all property of CWL and are registered and protected with MyFreeCopyRight.com.
They are not intended for personal use, personal endeavors or for other support groups.

Everyone at CWL works very hard to provide support and strength for all of our members. We ask that you please be respectful of our policies so we can continue to make
our mission a reality!

Sincerely, The CWL team

Floppy larynx BFF's

2011-03-22T10:43:00.000-07:00

Jules is on the left and Seraphina is on the right

They say everything happens for a reason. Sometimes the reason is not apparent until the storm is over... but there is always a reason. Always.

If you had asked me what was the reason when Seraphina was first diagnosed...I probably would hit you and then said.. there is no reason.. there is something wrong with my baby.
No reason is good enough.

So here I sit, 14 months into LM and although a part of me still feels there will never be a good enough reason to justify what my baby has had to endure... there is also another part of me that says... oh yes, this IS the reason!

Up until I started CWL I had never met another baby with severe LM, like Seraphina. Mild "common" cases, yes. Severe, surgery needing cases, no. I was floating through life wondering... if Seraphina was the only one. Online support is one thing. But to be face to face with another LM mother and LM baby... that is something else.

In November I met Christine and her daughter Jules for the first time. Christine came to the CWL volunteer meeting. I remember, she was standing there holding Jules... with her apnea monitor on. I had never seen another baby (besides my own) with an apnea monitor on. I never heard another LM baby cry (or should we say, choke)... I didn't have to say one word because... I knew exactly what she was going through... she knew exactly what I had gone through.

So over this past weekend we went to our local aquarium with the kids and a few other mom friends and their non floppy larynx babies. As I took a picture of Jules and Seraphina sitting by the seals ... I could not help to think... these babies have been through a lot. A lot x 100.
They did not seem to get caught up in the fact that they both have floppy larynx's, that they both had major airway surgery, they both are stronger than they will ever know... no... they just wanted to see the seals and crawl around... so what if they have floppy larynx's?!?

:)

*thank you Christine for being a wonderful, true friend.*

We have a new web address!

2011-03-21T15:51:00.000-07:00

Coping With Laryngomalacia is proud to announce that we now have a .org web address!

You can now find us at:
www.CopingWithLM.org

*you can still use our old web address and Blogger will automatically redirect you*

A donation from Blankie Depot!

2011-03-21T15:38:00.000-07:00

On March 16,2011 Coping With Laryngomalacia
received a HUGE blanket donation
from Blankie Depot (Keyport, NJ).

We are now well stocked with hand sewn, knitted and crocheted baby blankets all ready to keep babies warm and cozy in ICU while they are recovering from LM airway surgery
(a supraglottoplasty).

Coping With Laryngomalacia would like to thank Blankie Depot
for their continued support!

Is your baby going into surgery in the near future?
If so, please Email us at CopingWithLM@yahoo.com
and we will send a blanket out asap.

Wordless Wednesday

2011-03-16T11:21:00.000-07:00

naptime

The CWL Gear Give-a-way winner is....

2011-03-12T06:05:00.000-08:00

And the winner is...

Min:1
Max:7
Result:2
results from random.org generator

Karen!

Karen said:
"I am following and that bags looks perfect to hold my CWL blanket making crochet materials!!"

Congrats Karen, please send your mailing address to CopingWithLM@yahoo.com
and we will ship out your prize ASAP!

Thanks to everyone who entered!

CWL Update Nov 2010-February 2011

2011-03-08T19:03:00.000-08:00

CWL Volunteers: Blanket/Toy Drive 12/4/10
a group of people who care a lot about floppy larynx's...

Wanted to update everyone on what Coping With Laryngomalacia
has been up to in the past few months...and it's been a lot!

On November 19, 2010 Coping With Laryngomalacia's founder, Stephanie Hueston was on the front page of The Monmouth Journal. The article titled "A Mother Knows" can be read here.

On November 21, 2010 Coping With LM held it's first volunteer meeting at Panera Bread in Middletown NJ. Big thank-yous to all the volunteers who showed up!

On December 4, 2010 Coping With LM held it's First Annual Blanket/Toy Drive at the Leonardo First Aid building in Leonardo NJ. Some of the activities included: face painting by Party Starters, lunch provided by Zoe's Vintage Kitchen and Adam Jackson, a special visit from Jersey Shore University Medical Center's Hopscotch the Bunny, over 20 gift raffle gift auction and a CPR/First Aid education class provided by one of Leonardo First Aid Squads members. With the help of over a dozed volunteers we were able to collect 84 new toys and over 30 blankets! We also raised over $800.00 so we can continue to provide support and strength for parents, families and patients who are coping with laryngomalacia.
Amazing!
Pictures (curiosity of Eric Richmond Photography) from the event can be found here.

On December 16, 2010 Coping With Laryngomalacia dropped off 20 handmade blankets and 25 childrens toys to Jersey Shore University Medical Center's K. Hovnanian Children's Hospital. This drop off was made possible thanks to EVERYONE who donated at the First Annual Blanket/Toy Drive which was held on December 4th, 2010. To read more about the drop off click here.

On January 18, 2011 Stephanie Hueston founder of Coping With LM, completed the Non-Profit Management program at Brookdale Community College and received her certification in Non-Profit Management a few weeks later. AND Seraphina (the baby who started it all) turned 1 year old!

On January 24, 2011 Coping With LM announced it's winner, Baby Adriana, in the Cutest LM Baby Contest. The winner received her choice of a handmade head band from Bella H Headbands & Hats. Thank you to Bella H Headbands for your donation!

On February 5, 2011 Coping With LM started it's Causes page on Facebook.

On February 16, 2011 Coping With LM put together a testimonials blog post with first hand testimonials on how Coping With LM has helped parents, families and patients who are coping with laryngomalacia. To read more about how Coping With LM is changing the world, one blanket at a time click here.

Coping With LM's future:
New2YouKids consignment sale will be handing out Coping With LM flyers during their spring sale March 16-19 at Brookdale Community College in Lincroft, NJ.

The winner of Coping With LM's Gear Give-A-Way will be announced on March 12, 2011.

"I love someone with a floppy larynx" bumper stickers will be available for purchase by the first week of April.

Coping With LM is currently planning a Coping With LM New Jersey Mom's Support Group Meeting to be held this spring. Anyone interested in attending this meeting or volunteering please contact Stephanie Hueston Paden at CopingWithLM@yahoo.com

Coping With LM is now affiliated with Fluff Envy, a cloth diapering website.
To place an order please click on the Fluff Envy button on the right side of the blog.

Update on Seraphina:
As most of you know, Seraphina has been in and out of the hospital since Christmas. Right after her admission into the hospital after Christmas the doctors found she stops breathing 13 times in 7 hours and has episodes of very low oxygen levels. On February 7th she had a five minute focal seizure which was caused by a injury to her brain from the lack of oxygen. Still with no diagnose other than LM (ALL of this is NOT related to the LM) Seraphina's doctors felt it was time to take her to CHOP. After meeting with the doctor from CHOP he decided the best thing to do is to have a sleep study done at CHOP. We will go back at the end of the month for that test. All of your prayers and support is truly appreciated! Seraphina is one strong little girl and we know she will get through this! To end a good note, on January 31 Seraphina was cleared from cardiology... her heart is no longer enlarged!

Thank you from CWL!
Because of the support of our sponsors, donors, volunteers and LM families we have now been able to help hundreds of parents, families and patients coping with laryngomalacia.
CWL has now been able to start sending out blankets to LM babies who
live out of state and are going into surgery.
Thank you for your continued support!

Want to donate? Volunteer? Just have a question?
Email Stephanie Hueston Paden ANYTIME
at CopingWithLM@yahoo.com

Coping With Laryngomalacia, Inc.

Happy New Year!

Chibebe Donation Program App

We are updating!

It's almost here!

CWL Supporters: Cyber Monday Deals!

Family Fun Day & Blanket Drive--Volunteer Sign Up!

Family Fun Day & Blanket Drive--Update!

Blankets for LM Babies Application

November Update

CWL is moving!

Where she was...where she is.

9/18/11 event at JSUMC

Special needs...special babies.

"I don't think the worst thing that could happen to me is having a child with special needs. The worst thing would be to raise a child who is cruel to people with special needs"-Tyson Sawyer

Scentsy Online Fundraising Event!

Nap Nannys, sick babies and a 3 year old

Calling all CWL Volunteers!

Breastfeeding Support Team

Nap Nanny Application

Update on Seraphina

Blanket donation from Hookin' It Forward

End of the summer AVON Fundraiser

Lia Sophia Fundraiser

*Special Offer* from Get Organized! Journals

Takin' a break

Seizure on aisle 5!

Power of Parents

Formula Donation Program

The right thing

Nap Nanny Donation Program

How to Help

Holy Nap Nanny!

Happy 1st Birthday, CWL!

Happy Bday, CWL! Love, lia sophia

lia sophia

The worldwide social fashion experts will be helping to support children with Laryngomalacia in conjunction with Coping With Laryngomalacia, Inc.

In honor of CWL’s birthday this month, from July 1st to July 31st

Karisa Playter, an independent advisor for lia sophia, will be donating 10% of any purchases made from her lia sophia website to CWL.

lia sophia is ALWAYS running specials

and JULY has the best special of the year!!!

All month long customers can purchase one item at full price, THEN purchase their two MOST EXPENSIVE items at HALF price!!!

(Must be purchased in multiples of 3 to receive the special pricing)

ALSO for the first time EVER lia sophia will allow customers to buy from both the Spring/Summer catalog AND the Fall/Winter catalog

from July 11th to July 31st!!!

If you would like to support this great organization, please go to my website

www.liasophia.com/karisaplayter

1. Browse our beautiful jewelry online at your convenience

2. Write down the name, item number and price for each piece

3. Then simply send me an email at karisaplayter@yahoo.com with all of the information for the items you’d like to purchase, as well as your Visa, Mastercard or Discover credit card information & expiration.

4. *Don’t forget sales tax and a $3.80 shipping charge will be added to your order*

5. *Please make sure to write “Supporting CWL” in the subject of the email to ensure that the donation will be made*

And the winners are...

F U Anger!

Avon Fundraiser Total!

Beautiful Baby

The winner of the Fathers Day giveaway is...

Surgery...one year later

Lots of smiles!

CWL Cafepress.com shop is now open!

A Floppy Larynx Birthday Celebration!

Toy drop off at JSUMC

Staying Organized.

The Floppy Larynx Fairy... is MIA.

Smiles!

CWL Update March - May 2011

CWL's Summer Challenge...starts now!

Candle Light Vigil for Baby Mika

Wordless Wednesday

Avon Fundraiser for CWL

The CWL Team has grown!

Strength to get to the top

Coping With Laryngomalacia, Inc.

Tuesday night

2011 Safest Car Seats

Where the blankets go

Karen & Liam's Story

Spring 2011 Online Fundraiser!

You Are Invited!

DVD's are here!

Special Offer from Get Organized! Journals

In honor of CWL’s birthday this month, from July 1^st to July 31^st

from July 11^th to July 31^st!!!

4. Don’t forget sales tax and a $3.80 shipping charge will be added to your order

5. Please make sure to write “Supporting CWL” in the subject of the email to ensure that the donation will be made