Coping With Laryngomalacia, Inc.

Welcome!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Wed, 04 Jan 2012 02:28:00 +0000

Welcome!

Coping With Laryngomalacia, Inc. is the
FIRST laryngomalacia
501 (c) 3 nonprofit organization in the USA.
All donations are tax exempted by law.

Our Mission:
To provide support, strength and education for
parents, families and patients coping with LM, TM & BM.

Do you have a story?
CWL is now accepting submissions to it's newest (and biggest!) project.
The Coping With LM: Book Project.

Upcoming events:

Spring Online Fundraiser: Hosted by Dove Chocolate Discoveries. To shop click here.

CWL's 2nd Birthday Bash!: July 8th at the Monmouth County Racetrack!
To RSVP/purchase tickets click here.

CPR Training Class-New Jersey: July (exact date TBA)

Fall Online Fundraiser: September 2012 hosted by The Pampered Chief

Barnes & Noble Gift Wrapping Benefit: November (exact date TBA)

Shop for a Cause! Holiday Vender Shopping Event: Late November/Early December
venders wanted!

Upcoming Online Support Group Meeting:
Wednesday May 23, 2012
9-10 pm EST
Email Stephanie for more information
CopingWithLM@yahoo.com

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

ALL questions & comments can be sent to
CopingWithLM@yahoo.com

Chibebe Donation Program App

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Wed, 04 Jan 2012 02:24:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Wed, 07 Dec 2011 02:07:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Fri, 02 Dec 2011 00:13:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Sat, 26 Nov 2011 19:29:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Sun, 20 Nov 2011 18:39:00 +0000

-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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Sun, 13 Nov 2011 15:26:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 03 Nov 2011 01:56:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 03 Nov 2011 01:10:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 13 Oct 2011 17:57:00 +0000

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.

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 29 Sep 2011 19:41:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 22 Sep 2011 23:32:00 +0000

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.

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Fri, 16 Sep 2011 14:35:00 +0000

"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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Wed, 14 Sep 2011 17:28:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Fri, 09 Sep 2011 23:08:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Wed, 07 Sep 2011 00:48:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 01 Sep 2011 20:01:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Fri, 26 Aug 2011 01:16:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Fri, 19 Aug 2011 18:21:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Sat, 06 Aug 2011 01:40:00 +0000

...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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 04 Aug 2011 18:59:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 04 Aug 2011 18:12:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Thu, 04 Aug 2011 17:35:00 +0000

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

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Tue, 02 Aug 2011 21:23:00 +0000

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!

noreply@blogger.com (Steph @ Coping With LM, Inc.) — Sat, 30 Jul 2011 01:12:00 +0000

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.

Coping With Laryngomalacia, Inc.

Welcome!

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!

Special Offer from Get Organized! Journals