Spreading LM Awareness through out Middletown, NJ!

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...

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

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....

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!

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.

...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!

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!

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...

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!

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

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

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

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...

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

...You...

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!

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

Wordless Wednesday

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

Tell Inc.com CWL is AWESOME!

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

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!

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

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!

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

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