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December 20, 2014
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December 20, 2014
1 person found this review helpful

This group has a passionate founder and hundreds of supportive members. It has helped me in critical moments and helped me cope with the unknown aspects of this condition. I just wished our Children's Hospital had known about this group as our baby was hospitalized from birth for 104 days with little information provided. I have since told anyone I can! Thanks.
December 10, 2014
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December 10, 2014
1 person found this review helpful

My son was diagnosed with severe lm and tm at 6 weeks old and had it not been for this site, I would have worried myself sick. There are so many people willing to share their stories and answer questions. This site has been a great sense of comfort during this trying time.
December 9, 2014
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December 9, 2014
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I was lost before I found Coping With LM. Now that I have found them, they are by far a great support system. They have great support words and help bring comfort to my son during his sleep study and his surgery.
October 24, 2014
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October 24, 2014
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Giving birth to you child is an experience, no words can describe. Bringing your baby home, sharing them with your family, another exciting experience. Having your maternal instincts tell you there is something wrong with your perfect little baby, yet again, an indescribable experience.
I
remember sitting at 3 a.m. trying to feed my newborn Joseph, and panicking because he was choking on his milk. It was an unforgettable experience. The sound, which I know now is a stidor, sounded as if he was drowning and just coming up for air, his lips would turn blue because he'd stop breathing in between. Frightening, would be the closes word to describe it, I was terrified to feed him.
I began video taping his feedings, and took it to his pediatrician. She heard to tape and said to me "your son has something called, laryngomalacia". My son was five weeks old at this time, born at 36 weeks.
She began to give me a brief description of it, and said "don't worry he'll out grow this, he'll be fine". Although, I was reassured by her words, it wasn't enough.
I needed to find out more! Like other parents, I began an internet search on this weird thing, LARYNGOMALACIA. After I typed it into the search bar, I was immediatly lead to, Coping with Laryngomalacia's website. It was as if the gates of heaven opened up. Because of the information on the website, I was able to get a grip on my son's diagnosis. The website had a link to its facebook page, which I became a part of. It has brought me such comfort in knowing that I am not the only one! I was able to read and relate to other mothers, and read their stories or questions. I was able to use it as a sounding board for my worries and concerns.
Today when it comes to my son, I feel like I'm a pro at this. Being a part of the Coping with laryngomalacia community, I have gained the knowledge to know that my son will be okay, and that although we will have rough days, I have my little community to back me up.
Along with the support from social media, the organization hosts "laryngomalacia meet ups" where you get the chance to meet face to face and make bonds. I had the pleasure to attend one recently, and it proved to be such a blessing. We live in New Jersey, the founder of the organization, Stephanie was hosting a play date at a local park. She began to share with me why she created, Coping with Laryngomalacia. I am so glad she answered her calling, we are blessed beyond words.
Joseph and I both proudly nominate Coping with Laryngomalacia as a GREAT NON PROFIT ORGANIZATION!
September 19, 2014
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September 19, 2014
1 person found this review helpful

My little girl stopped breathing at 10 days old .. With other symptoms clear to me but confusing to others including her pediatrician I was convinced there was something more. I found this site right before our ent appointment which I fought to get .. In between those few weeks seeing specialist upon specialist every corner we turn - another challenge .. I never felt alone .. I could post questions concerns and my craziness on the Facebook page and was able to get in touch with others that are walking my walk.. To know I am not alone and mostly to be able to gain knowledge about LM has changed my world.. Thank you for helping me feel so supported as my little baby girl fights this !
September 19, 2014
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September 19, 2014
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At 8 weeks my little man was diagnosed with LM. He has always had problems breathing and eating. After I got the diagnosis I felt lost and didn't know where to turn. I found CWLs facebook page and I had a sense of relief come over me and I knew I was not alone. In late June 2013 we went in for another scope and they said M's LM is much more severe then they originally thought before because the first scope was unclear because his reflux was so severe. They scheduled us for a stat Supraglottoplasty on July 2nd. M had many complications after his surgery and it landed us in the PICU for 6 days. They sent him and I a care package for the procedure that made M have something to snuggle. I still get an email here and there asking how everything is going. I feel like I have tons of people behind me and a group that knows what I am going through. This organization has helped me in so many ways and I can not ever thank them enough.
September 19, 2014
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September 19, 2014
1 person found this review helpful

Both of ours sons were diagnosed with LM but the oldest was severe and needed surgery 4 days after being born. We were devasted, scared and full of questions. This support group helped us get through it and answered most if not all of our questions. And now that Zach is almost 3 and thriving I can now give advice and help others that were in my shoes. I don't know what we would've done had we not found CWL. #breatheasy
September 18, 2014
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September 18, 2014
1 person found this review helpful

This organization was one of the few references of information I found when I learned my 2 week old son had Laryngomalacia. I am now 9 months into his journey and have to say that Coping With Laryngomalacia has been with me the whole time and I would have been so lost without the information and advice I got from this group. Thank you for all you do!
September 17, 2014
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September 17, 2014
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I struggled getting a diagnosis for my daughter and the battle was all uphill. I searched and found CWL group on FB and was welcomed openly an warmly by all the parents who know first hand about LM and the trials of this diagnosis. It is a an amazing support group and everyone is so knowledgable through their own experiences. It helped me to get through the scary and unfamiliar parts of LM and also helped answer so many questions that I had about the unfamiliar and I chartered grounds we were walking. I am in a very small town in Ontario Canada but felt so present in this community. More recently I referred another mom of a baby boy to CWL to which she has felt so welcomed as well. Everyone provides so much good here and I thank everyone from the bottom of my heart. God bless all the little ones and all of the parents. Xo
September 17, 2014
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September 17, 2014
1 person found this review helpful

When I was pregnant with my son I dreamt of all the wonderful firsts that were to come. I never imagined that my son would be born with an airway defect that made him struggle to breath, eat and ultimately fight for every moment. I found this organization one night in the hospital when my son was 3 weeks old. He had been struggling to eat and breath since birth and then he just stopped breathing. Suddenly I found myself in a world of firsts I wanted no part of, first IVs, first feeding tube, first heart monitor first apnea monitor, first night crying all night holding him praying he keeps breathing. This organization has given me so much knowledge, strength and comfort I can't even begin to explain it. Connecting to other parents who live in this terrifying world of laryngomalacia and tracheamalacia has been and continues to be invaluable.
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