Wednesday, April 27, 2016

You are not alone. We are here.

For many babies who receive the diagnosis of laryngomalacia it is simply noisy breathing. Usually no further medical treatment is required after the initial diagnosis. For their parents, laryngomalacia becomes a forgotten word as their baby reaches milestones, 
thrives and "out grows" the noisy breathing by his/her first birthday.
 
And then there is that very small group (1-5%) of babies who are diagnosed with life threatening laryngomalacia. Parents of these babies are thrown into a world of unknown.
They must cope with hospital stays, major airway surgery, other related medical conditions and lack of support, to name a few. Life is turned upside down all because of a congenital defect that was supposed to be common, benign...no big deal.

CWL Founder & President Stephanie Hueston with daughter Seraphina.

 
Parents of severe laryngomalacia babies often feel anger, fear, unsupported, overwhelmed and alone. Unable to connect with other severe LM parents because severe LM is so rare.
This is why Coping With Laryngomalacia, Inc. is here. To provide support, strength and education for families coping with laryngomalacia, tracheomalacia and bronchomalacia.
 
Our goal is so no LM Supermom has to sit in ICU, 
watching her infant struggle to breathe and think,
 
I wish I had someone to talk too.
 
You are not alone. We are here.
 
I know how it feels to sit in ICU. To have to breathe for my baby. To wish for support. To be angry that my child had to be in the "worse case we've ever seen" category.

I know because I was there.
 
Though the journey has been difficult, life changing and oh so overwhelming... 
 I will tell you this...the good follows the bad. 
Always.

Breathe Easy, Stephanie Hueston CWL Founder & President
#LuTheLamb CopingWithLM.org
Carrier: Moby® Wrap

Tuesday, April 19, 2016

Natalie's Story

The good follows the bad.

This is my pint sized powerhouse, Natalie. She turned 3 a week ago. She had a tough road like a lot of the little ones here. She had a supra done at 6 weeks, adjusted age 1 week. We had tube feeds, tons of meds, therapies and so on. It wasn't easy on her or us. We had good days and then it seemed like we took 20 steps back. 

Natalie, age 3.


I remember her being 9 months old and having to syringe feed her for days because she wouldn't eat. I just sat in the hallway crying. This group saved us and my sanity. We will always be grateful for you. Even though it felt like it would never end, things got better....slowly. We don't have symptoms now unless she gets sick. She no longer has anymore therapies or special instructions to help get her caught up on her milestones. She's ahead at this point! As bad as it seems, one day it will get better.
 I love my pint sized powerhouse! 
(She picked out this shirt. It's her favorite)

-Laryngomalacia Mom, Cynthia