Sunday, January 20, 2013

Donating to CWL: Q&A

Everyday The CWL Team receives many Emails and messages about donating to CWL. 
How do I do it? 
What kind of donations does the organization need? 
And most importantly, where does my donation go? 
Who does it help?

We have compiled  a Q&A post for all your donation wants, needs and knows! 

Q: How do I make a monetary donation to CWL?
A: You can make a monetary donation via the PayPal Donate button on our website here or by sending a check (payable to: Coping With Laryngomalacia, Inc) to our HQ.

Q: What will CWL do with my monetary donation?
A: CWL depends on monetary donations to run all of our programs and mission. Here are some examples of  what CWL does with it's funding.
-postage for blankets/socks via our Surgery Support Programs
-postage for formula via our Formula Assistance Program
-educational supplies such as CWL postcards and LM Supermom Newbie Packets.
-tax filing fees 
-website hosting fees

Q:Is there a minimum donation requirement?  
A: No, every dollar counts.

Q: Does CWL receive any federal funding?
A: No. 

Q: Does CWL receive any grants from other organizations? 

Q: Does CWL have a paid staff?
A: No, CWL is an all volunteer 501 (c) 3 nonprofit organization.

Q: Money is tight, what else can I donate to CWL?
A: CWL accepts the following donations:
-new, handmade blankets
-new, unopened, unexpired infant formula
-infant formula coupons
-stamps & office supplies

Q: I do not live in New Jersey so I am unable to attend CWL's fundraising events. I want to spread awareness and support a cause I feel passionate about. 
What can I do?
A: Here are some ideas!

-In Lieu of Favors: at your LM child's next birthday party make a donation to CWL in honor of your guests. CWL will send theme related "In Lieu Of" cards  directly to you so you can educate your guests on CWL, what we do and help spread LM awareness.

-Host a bake sale

-Direct Sales Online Fundraiser

-Car Wash Fundraiser

-Host a Blanket Making Party: invite your crafty friends and family over to make blankets for LM babies going into surgery. 

-Host a Formula Collection Drive: ask local moms to donate their unopened infant formula to CWL. (Many new moms receive free formula from mailings and from the hospital.)

-Block Yard Sale: invite neighbors to clear out their closets and support a good cause!

Note: all donations are tax exempted under federal law.
Prior to fundraising, please check with your town for information on their gambling laws.

There are MANY options! 
Be creative!
 Get your friends, family and community involved!

For more information about donating to CWL please Email CWL President Stephanie Hueston at 

Wednesday, January 16, 2013

Getting Answers: The 2013 Research Project

From the moment you find out your child has a defect you want to know, why?

To our knowledge, the medical community is still unable to tell mothers why their baby was born with an airway defect. Or why one child was born with it and doesn't require surgery and another child does. 

One of our projects for 2013 is to conduct a public research survey to gather more information about the severity of LM, the speed of getting a proper dx. and other complications that can be related to LM, TM and/or BM.

How it works:
Every mother (who has birthed a LM, TM/BM baby) is invited to take the survey. 
All answers are annoymous. 
You will need to complete one complete (each survey has 2 parts) survey for EACH of your children that has LM. 

The whole survey is broken into two parts.
First part: About the child
Second part: About the mother and her pregnancy  

We will continue to collect data until June 2013. 

We ask that you be as honest, upfront and clear as possible.

Once we gather and analyze  all the data then release a report in the summer of 2013. 

Survey CLOSED 

Thank you! 
-The CWL Team

Tuesday, January 15, 2013

Ella's Story

Over a year ago I was offered to share Ella’s journey. You probably thought since you never heard from us that I wasn’t interested. It was quite the opposite. I wrote 10 drafts easy. It seemed so overwhelming. Was this really our story? Did this really happen? So I wrote another draft because obviously I was exaggerating. This didn’t tell our whole story, not even close. I wrote again. Now we are hitting 2yrs on February 15th since Ella’s Aortapexy and 3yrs on February 8th   when  Ella joined our family 5 weeks early and I am attempting to share it again.
                I was diagnosed with an irritable uterus at just 18 weeks and by 22 weeks I was making weekly trips to the hospital to stop the contractions.  I prayed every night to just hold on until she would be safe to enter this world. Super Bowl night I was only 34weeks 6days and I was in so much pain and tried everything from laying on my side to drinking a ton water. It was time for my weekly visit to L&D. I went in and my contractions were only 2 minutes apart. I had previous c/s so this birth too was a c/s. When the morning came and my contractions came closer they told me my uterus was dialating and they were sure it would rupture and I was heading in for my c/s. I was now 35weeks to the day and that was the hospitals minimum for delivery before they shipped you to Boston. Man I wish I was 34weeks and got moved. Ella was born perfect as can be. She had trouble breathing and they sent her Boston. I had complications myself and spent the next 4days alone without my baby. I wish I had been transferred with her.Then she was moved back to an area hospital and I spent the next 3 days holding her as much as they would allow. I was discharged on Valentines Day without my newest love. It was aweful. When I went every day for feedings. I noticed a noise and trouble breathing. I was told this was normal preemie behavior. I didn’t know, I never had a preemie before.
                Ella was discharged with a visiting nurse who came to check on the both of us. Since we were home I noticed more and more “squeaks” coming from her and then the chest retractions started.  All of the Dr’s told us it was normal but the nurse, she listened. She told me to keep my video camera out. She told me to fight until I felt safe. She suggested I go to the ER with Ella in the city. I packed up my baby and we went. That was our first of many stays. She was diagnosed with aspiration on thin liquids and LM. We were referred to ORL for follow up.  We were told it is really a common problem that it will be outgrown. However, if it persists by 8months they would do further testing.
                I was exhausted. Feedings took 1-2hrs then 20minute breaks and it was time to eat again. My husband was working 16hr shifts 6days a week so I was on my own with Ella and her older sister who was just under 2yrs old. I remember one night I just couldn’t keep my eyes open. Jeff told me to go to bed and he would do the next feeding so I could survive the night. I just fell asleep and my door was flung open and this little baby was thrown at me. Jeff was scared. She was gasping so bad with her chest retractions. I went into calming mode. If I got upset then she got worse. I sang to her and rocked her until it passed. This was our life. Scared all the time. Everyone thought we were exaggerating. Ella still didn’t cry at this time. How could a baby be so sick and NEVER cry. Everyone thought we had the happiest baby in the world because she was so quiet. They didn’t get it. She was quiet because she COULDN’T cry not because she didn’t want to.
                Months go by. Her breathing is getting worse with age. She is now 6months old. She couldn’t roll over, cry, babble or anything vocal. Time for another visit yet again. I demand more testing and we go in for the scope.  My poor baby only had 30% of an airway. The Dr’s now want an MRI and it was a 2month wait.  At this point all of my friends who had babies this age were so excited showing pictures of their little ones eating food. I was so jealous!! My baby couldn’t even sit up yet never mind eat food. She had zero muscle tone. We later found out that all of her energy went into breathing so she wasn’t capable of using her muscles. Ella wasn’t hitting a single milestone but I had the happiest baby on the planet who never cried so still no one understood it.
                The worst phone call of my life came from a Dr I never knew anything about. …….. a Cardiologist. He called me with Ella’s MRI results. I was so scared. He told me an artery was strangling her from the inside. It came off her heart and wrapped around her trachea. He wanted her in surgery the following week. The week before her first birthday. I asked for 1 thing normal for this amazing baby. Please let me give her a normal first birthday. He said that was fine. Ella went in for pre op on Valentines day ironic that it was also the same day I left my baby in the hospital one year prior. The next day she went in for surgery. When she came out her squeak was gone!!!!!!!   She made one more trip to the ICU 3 weeks later when she had so much fluid on her heart that we were seconds from losing her. She never cried. She never warned us it was coming. This “quiet” girl couldn’t tell us anything and it almost cost us her life! She had a drain put in and we were home in a couple days.
                Ella was 15months old and I heard her first laugh!!!!! Oh man, I will never forget that day. I cried and cried. It was so amazing to hear her laugh.   With OT, ST, feeding team and Nutritionist we were able to get her caught up.
                Ella is turning 3 next month. She is insane and I love it! She can climb anything and does it all the time! She has no fear. She feels no pain.  We have overcome some severe texture issues with food. She doesn’t eat a wide variety but she eats a balanced diet. I can hear a stridor still if she is laughing extremely hard and it sends shivers down my spine. When she is having a 3yr old fit and screaming at the top of her lungs because she didn’t get her way I remind myself that I wanted this. I didn’t want the quietest baby in the world. There is a drive behind Ella. A drive that is going to take her far in life. We have had quite the journey and the new chapters keep getting added to it.
-LM Supermom Lisa 

Thursday, January 10, 2013

Ava's Story

Hi my name is Ashley and my daughter Ava had surgery for LM at just 14 days old. It was a complete nightmare. Here is my story....Right after giving birth to my daughter Ava who was full term 8lbs 6oz 21in long I noticed she was breathing weird. I asked numerous doctors and nurses what they thought. Everyone told me she was fine. Even my friends and relatives that visited thought something just was not right. But I was the crazy new mom and I was told she was fine. She continued to breath funny and it became very hard for her to eat. I took her to the doctor At just 10 days old for her check up. I then told the doctor that she was breathing very noisy and sometimes seemed like she couldn't breath. I was AGAIN told she was fine. That night at home while trying to feed her she struggled so much that I got mad, called the doctor and said I wanted to be sent to a specialist. They gave me a number to a ENT at children's hospital. I called and they ended up squeezing me in 3 days later. When I got there they scoped her right away. I was then told that she had severe LM and would need surgery that week. I couldn't believe it. I was beyond upset, sick, and scared. All this time I had been told she was ok. The ENT then asked me to feed my daughter. So I did and she saw how much she struggled. At this point she could barley eat. After watching her eat we were immediately transferred to the ICU at Children's hospital Hospital. She was scheduled for surgery the next morning at 10 a.m.  The Dr. Then decided to put off all other surgeries and do Avas at 6a.m. Surgery went well until they tried to recover her from anesthesia. She stopped breathing numerous times. It took about 5 hours post surgery for her to be stable. We then spent the next 7 days in the ICU. She was kept on monitors for 1.5 weeks after surgery and She continued to have strider for 6 months post surgery but not as bad. She is now 18 months old and doing great! I always tell people you know your child best! Parents always know something is wrong and do not let a doctor tell you otherwise!

- LM Supermom Ashley. 

Tuesday, January 1, 2013

Looking Back: 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
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?

Newsflash, life is not fair.

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
I am a mother of a special needs child.

Seraphina was born with laryngomalacia, tracheomalacia, GERD, LVH of the heart, s2 heart murmur, central and 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...

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 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,
I think... yup, life is good.

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