This is an amazing group that has given us so much more information than we have ever received from any medical professional. Our ENT is wonderful but we found him after reading the stories of other LM families and deciding that we needed to speak up at the pediatrician's office. We are grateful for the support shown to us through their wonderful facebook page as well as a very kind care package we received before a surgery. This is a nonprofit that truely supports it's cause.
6 months ago I have never heard of Laryngomalacia and was in a world of unknown. This organization has provided tremendous support every step of this journey, whether it be information, questions to ask our doctors, emotional support, and a care package. This organization helped me to help my son. I will forever be grateful.
This is a wonderful organization of people who truly care and try to help. Laryngomalacia is a common problem yet most people have not heard of it until their child gets diagnosed. It can range from very mild (no big deal) to very severe (very big deal). There are all levels of severity discussed in the Coping with Laryngomalacia Private Facebook Group which is wonderfully managed by Stephanie. The group and the organization are very supportive and help parents, grandparents, and anyone affected by this diagnoses to cope and learn strategies as well as spread the word to the world about Laryngomalacia and other associated diagnoses.
So thankful for this organization and all of their information. If it wasn't for this site I never would have pushed for more answers from her doctors! I'm also glad they have connected me with other parents going through the same struggles. It's good to know we are not alone.
I have 2 little ones with Laryngomalacia, one of which also has CHD and the journey has been so rough at times. Most new moms watch their babies breathe just because they are nervous that something may happen; however we watch our babies breathe because we know that the simple task of taking each breath is a struggle for them. CWL has been an amazing support through both of my children's medical journey and I am not sure where I would be without this amazing group.
We were diagnosed with laryngomalacia and had surgery scheduled one week later. We found this site. Not only did we find great resources, information, and support; we found d hope. They sent us a care package with a lovely blanket and Lou the lamb. We even got our package prior to our surgery! I can't express my gratitude for this nonprofit organization. We have been beyond blessed.
My son was dianosed at around 6 weeks old with LM. He had his very first surgery at almost 3 months old. Coping with LM has been a real life saver. They are always teaching out to help people that are dealing with LM. Not only is the founder a great woman but the members are awesome as well.
When my daughter was diagnosed with laryngomalacia at 7 weeks old, I felt alone and terrified. this past year has been challenging to say the least--from feeding and weight issues, reflux, numerous dr and specialist appointments and now finding out a week ago she will need to have surgery that we were originally told she would not need to have--however, the support and the community from Coping with LM has been incredibly helpful. We are so worried about her surgery and can't even imagine how her 14 month old mind is going to cope and understand this but our worries have been helped by the special and thoughtful care package that this organization sent her so she can have some comfort during her hospital stay. Coping with LM is a wonderful support network for us and I don't know how we would've managed this past year without their knowledge, resources, and support
I was so thankful to find Coping with LM after my daughter's diagnosis. I learned so much about her condition and knew what to ask her doctors. I am thankful to know we are not alone in dealing with this.
It's been a hard year and couldn't have done it without there support xx