Coping With Laryngomalcia, is a wonderful group for those of us who have a child with an airway defect. I found great comfort and support knowing there were other parents going through what I was, feeling what I felt, and knowing I was not alone made a world of difference. I am so lucky to have found such a great cause not only to be a part of but support!
When my youngest son was diagnosed with LM, I was lost. The doctors weren't overly helpful, so I went to the internet. When I found this page, I felt like I was no long crazy. I felt like all of my concerns were not only legitimate, but other people were going through it. My husband and I feel extremely supported through this group. As we figure out what the next step is for my son, I know I can turn to this group of people to help us through it all with advice and experiences of their own. Thank you!
A friend told me about this group....If it wasn't for this group i wonld not have now what Laryngomalacia was....This group has help me cope with what my son is going through... so i want to say Thank you so much...
Imagine having a child who is diagnosed with laryngomalacia and not only are you unfamiliar with this diagnosis, but you also have nowhere to turn for support and information. This organization provides comfort and support to families that are dealing with this, as well as information and the ability to be in touch with others that are in the same situation. Stephanie, the founder of this organization, works tirelessly organizing fund raisers, answering e-mails, sending handmade care packages to families, and providing support to families all over the world. As I see how many people are able to communicate and provide support for each other, I realize how proud I am to be a volunteer for this organization.
CWL has helped me so much. When my daughter was diagnosed at 1 month I was very sure what was going on. Being able to connect with other parents of babies with LM I could have questions answered in terms I understood. I was able to get real life experience stories.
I found coping with laryngomalacia after my then 4 week old daughter spent 5 weeks at mayo in Rochester Minnesota. I had just experienced life and near death with my daughter, and I felt so alone. She had undergone surgery to fix her laryngomalacia, and completely crashed the day after surgery. When we finally made it home after 5 long weeks that felt like 5 years, I opened my computer hoping and praying I wasn't the only one out there that has dealt with this. I saw a few things, basically saying laryngomalacia is a "common airway defect". Only 3 to 5 percent experience life threatening complications. This wasn't helping me, I needed people, I needed other experiences like mine, I was grasping for anything, and by the grace of God, I found coping with laryngomalacia on Facebook. Wow, I had tears flowing, and I posted on their wall. Not only did I receive the support I needed, I found some of the best friends in the world. I needed them, and they needed me. My daughter was also on a special formula, and this wonderful support group sent me formula every month. We have received so much from this, I am so excited to give back. They are my number one. I thank God for bringing them to me. I cannot thank you enough for coping with laryngomalacia. I will support them my whole life through. Love you all.
Before I found CWL, I felt extremely alone. I hadn't heard of Laryngomalacia, and thought for sure my daughter was the only one. I thank God for tihs support group everyday. My daughter had a difficult time after her supraglottoplasty surgery, and is doing fabulous now. She still has to sleep inclined and with CWL, they had nap nannies donated to them for children that needed them, and we were one of the lucky ones!! Our daughter sleeps great and couldn't be happier. I sometimes still feel alone, but then I just head on over to the CWL support group and know that I am no longer alone. All of the WONDERFUL people on this support group, especially the founder Stephanie Paden Huesten, she is absolutely wonderful!! I couldn't be happier with them, it is the best support group by far and as soon as I am done with Nursing School I plan to give back to this group over and over again! Thank you CWL, you were definitely a live saver!
I found CWL when my son was diagnosed with LM. I didn't know the first thing about this condition until I found this page. I could ask a question in the middle of the night and get an answer. His LM was so severe that he had to have a supraglottoplasty. We spent a week in Levines Children's Hospital and one night in PICU I know that may not sound like a long time but it felt like a lifetime to us. He is now wonderful but still struggles with LM daily and I can always turn to this page for support and advice. Also, after my pint sized powerhouse had surgery (since I didn't have a computer to sign him up before because we were in the hospital) he received a care package in the mail! With lots of goodies for both him and me! CWL has a special place in my heart and always will!
I found CWL when I googled Laryngomalacia almost 3 yrs ago. My pediatrician diagnosed my then infant daughter with it, and I had never even heard the word in my life. I asked him to spell it for me and researched away. Not a lot came up online, other than a few Dr reports.... And then I saw it was a group on Facebook! It was so comforting to know there were others out there dealing with the same things we were. The mom to mom help, advice, and experience was priceless and still is 3 years later. We have become a malacia community. a support group, and close friends all around the world!
THE BEST non profit ever!!!!
I have to say CWL has been a life saver for me and my family. I have a baby daughter that was diagnosed with LM very young. She had such a hard time breathing and I was so worried for her everyday. Her paediatrician said it was a watch a wait period, which was excruciating for me. And my Family Dr could hardly pronounce Laryngomalacia!! Through the guidance of Stephanie and other moms on the page, I had a lot of questions answered and knew what tests were needed and what they would entail. We got through the first year of my baby's life with confidence support and knowledge. Thank you CWL!:)
My daughter was diagnosed with LM and this group was fabulous with all the wonderful work they do. What an amazing group of people that come together to help us scared moms.
My son was born with LM and it turned our world upside down. CWL was there every step of the way with support. We are thankful for all they do for LM babies and LM families. They made an unimaginable event in life a little more bearable. Thank you CWL!
I saw coping with LM on the Internet one day and that's been a few years ago. And been reading up on the Facebook group ever since. . Every time I needed help or advice they were always there for me. When my daughter was still alive they sent me a box with so many little presents in. When I went through each item I started crying. I couldn't believe that people I have never met before could care so much. The cards were filled with heart felt words and support. Hand made knitted blanket and so many other items. I didn't know how to say thank you enough. And when my daughter Mika passed away they sent off a beautiful white dove into the sky for her in remembrance. These people that are part of coping with LM esp Stefanie has been a big part of my life since day one . And what I've decided to do is start a coping with LM in South Africa. To help parents and babies in S.A. as we in S.A don't understand what this condition is all about. Just want to say thank you to the team of coping with LM!!!! You are all amazing angels!!! ♡♡♡♡♡
I found CWL when my daughter was diagnosed with LM. They were extremely helpfully with information and helping get answers to my questions. They sent my daughter a very nice care package before her Bronchoscopy and even sent me a gift. I don't know what is would do without their support.
I only wish I had found this non-profit sooner! For the first year of my son's life, I felt very alone. I did not know anyone who had a child with challenges similar to my own. When I came across CWL one night, I was not sure what to expect, but I was almost immediately relieved that I had found others who were in a similar situation. Stephanie, the founder is wonderful. The little care package we received was such a sweet gesture, and I love that I always have the opportunity to swap stories, get advice and I now know we are not alone on this journey! Thank you CWL!
I'm writing basically to say thank you for all the support you provide families. Before my son was diagnosed with laryngomalacia I had never even heard of it. I am amazed and blessed to say my son is quickly heading towards full healing. At his last ENT appointment she did another scope and said he was almost fully grown correctly together. I no longer have to check my son fifty times during the night to make sure he's breathing. No more panic those few times he wasn't. There is nothing scarier. The support you offer families is priceless. This was the reason I brought you to the attention of the Amazon smile program a couple months back. I see that worked out and I couldn't be happier. Even though I was never a huge poster on the site I daily still read through and pay for those families still going through what we did and some in a much larger way. Your blankets and gift programs are fantastic. I have recruited my few crocheting friends to work on some blankets. Even when I didn't comment being able to see and read other parents going through the same things made it seem somehow more doable and little less scary and less lonely. So, thank you and keep up the amazing work. Jori Ludtke-Smith
Coping With Laryngomalacia is a great organization that helps bring about awareness of this uncommon defect. It is great for parents because it is a useful resource of information to help them through tough times and give them hope. Keep it up!
Copying with Laryngomalacia has helped my family through some very confusing times. They have offered support and insight on the many struggles that our baby faces. They generously sent her a care package to provide comfort during her hospital visits. It is so nice to have found a supportive community to travel with on our little ones journey to Breathe Easy.
My daughter is 20 months and was dx at6 weeks and underwent numerous surgeries, procedures, etc. She still has a way too go bit it has been amazing to have this organization to go to with other families who understand. Lots of support!
Before I found CWL, I was a lost mother looking for understanding and other parents who could relate to what my son and I were going through. I was BEYOND elated that I found CWL and became very involved with this non-profit.
My amazing son Evan was misdiagnosed for 16 months until I finally found out the correct diagnosis. My son had been dealt a difficult deck but with a lot of love, surgeries and outstanding doctors.... he is better! He just turned 5 years old and is beyond perfection.
I owe most of my sanity throughout this process to CWL and all of the members who share their stories, tips, tricks and doctors.
Thank you CWL for ALWAYS being there for my sweet boy and I!
This organization has created an incredible community for family struggling with LM. Through their incredible programs of donations grants blankets hospital services and more, they continue to raise the bar on understanding and raising awareness for this incredibly difficult defect! So proud to be affiliated with this incredible nonprofit!
We have had a long journey with our son who was diagnosed with Laryngomalacia at 4 months old after we struggled for answers for so long. Very few drs in our area know much about LM so we travel out of state for our son's care. When we were told he needed to have surgery at 6 months old I was a mess. Then I found CWL! The support we have received from them has kept me going when I didn't think I could anymore. We are headed back into the OR for the fourth time (2nd due to the LM) and CWL is there again. Even for the surgeries that weren't related to the LM, they were there!
My daughter had severe lm as a baby, and as a three year old, still struggles. Having this group as support has been amazing. It is reassuring to be able to share my worries and triumphs (no matter how tiny) with parents who get it- because not many parents in my small town understand the fear of having a child who can't breathe.
the evening after my daughter was born with severe LM, i was inconsoleble. i felt scared and alone in my hospitalbed knowing my daughter laid two floors down and i could not reach her if she needed me. she was so low in her sats i feared for her. then i went looking for information and found CWL. with CWL i found a family of sisters and brothers who were there for me in these hard times. during the last 2 years with 4 children with LM, i learned from the others what to do, what to expect and how to cope with the long nights in the icu. i hope the new moms and dads with the same fears as i had can learn from my experiances as we all talk together and join forces to help our kids. we are all looking out for eachother and are there when needed. when the carepackage for one of my children arrived containing LU and a blanket etc. tears welled form my eyes and even i wasn't forgotten with a nice note and some mary kay products. i'm gratefull for the help and the lessons i learned form stephanie, her team and the other moms. with you steph and them i would never have the knowledge i do now so i can help my kids during these challenging years behind and ahead of us.
my daughter was diagnosed with LM at birth. after a week in the hospital she was released. when she was taken ill and was hospitalized again; i needed information and i as a mother felt all alone. by coincedence i found CWL and with their support and great information i don't see my childs future as bleak as i first tought and i'm not afraid anymore thanks to the information. also talking to other parrents and sharing solutions helped me alot. knowing you are not alone in your struggle is very comforting.
When you're lost and looking for answers they've been there. When your facing surgery; scared, hurt, lost. They send you a feel good care package. My son recieved socks, a stuffie, a card, and a hand made blankie. It's comfort when there is no comfort. They even sent a special gift for me. A stressful time from diagnosis to new problems or issues this nonprofit does nothing but helps and serve. I thank them a lot!
I found Coping With Laryngomalacia Inc one night as I layed in my bed with an empty bassinet next to me. My daughter was stuck in the NICU with some condition I could not even pronounce! I read stories and asked questions and then asked more questions, there was always someone to answer, even in the middle of the night. My daughter is 15 months now, if it was not for this page I would have lost my sanity. She still struggles with LM everyday, and I am reassured because I know there is a caregiver out there somewhere who is ready and willing to support me in my time of need and I am ready to do the same for them!! Thank you CWL for helping my daughter and I survive LM.
Fantastic organization! They are providing such a positive yet informative site! Dealing with my sons condition is far less lonely and I feel less isolated As a result!
The support group has been such a blessing as we have been through our journey with our baby boys condition. The information and support we got from this group has been so helpful. Information on this condition is hard to find. They sent a care package to us for our sons surgery that was absolutely adorable and included pampering gifts for mom. We are so happy we found this organization!
This incredible nonprofit has created a community of families whose children are suffering from the same medical condition. It is the only place I could find to ask questions, get information, advice, and support from other parents who are going through the same thing. Everyone is kind and understanding and supportive. This nonprofit also has different programs that parents can apply to and receive donated funds, supplies, etc. This is a wonderful organization!
Steph, you're awesome and CWL is proof. I'm very proud of you for using your own experiences to help others affected. Keep it up!
My daughter was diagnosed with LM at 4 weeks. I was told that it was mild and she would grow out of it. I let it go and continued to deal with eating issues. It took her 1 hour to finish a 4 oz bottle. She was burning more calories trying to eat than she was consuming. It wasn't until after she started to lose weight that her doctor sent us to an ENT. Up until this point I could not find a lot of information for LM and what the expectations were of surgery or letting her grow out of it. I recieved no feedback from her doctor or ENT. Her ENT said lets do surgery but provided no pros or cons. I received far more information from Coping With Laryngomalacia, Inc than anyone else. I learned so much from other parents and the website alone. This is an amazing organization for families that are trying to work through LM. My daughter became a new baby right after surgery and started to eat with no problems. I probably would have said no to surgery if I didn't have all the information I needed and the doctors didn't provide it this organization did. Thank you.
My daughter was diagnosed with LM at 4 weeks. A month after that she started losing weight. I was refered to an ENT. The ENT did a scope and suggested surgery. I scheduled surgery but in the mean time I was trying to find information and details about LM and the surgery. I found websites that talked about LM and explained what it is but nothing gave me answers I was comfortable with. i researched this for weeks when I came across Coping With Laryngomalacia. There website was so helpful and answered so many of my questions. They have great programs you can apply for. Their facebook page has other parents with the same problem. I would ask a question and get answers and experiences from other people. At this time I was still debating if I should do the surgery because she had mild/moderate LM. After talking to other parents and reviewing the website I felt like I was educated enough to make a good decision. The surgery was the best thing I could have done for my daughter. She is a new baby with more energy to act like a normal 3 month old. People in general don't speak enough about different issues for whatever reason. To see somebody with the same idea, to get the information out there, was refreshing. Thank you!!!!
Coping with LM was a big help to me. I was able to know what to ask the ENT doctor to ensure my baby was having the diagnostic tests she needed. The founder and president was quick to email me back with answers and support. She gave me the name of an organic thickener for my baby's milk when I couldn't find one I felt was suitable. It's nice to have this resource for support when so few people in our lives know of LM. Thank you!
I no longer felt alone when my baby was diagnosed with LM after finding CWL. Stephanie is a great team leader and great support. They are doing a great job in helping ppl like us feel at peace. Thanks for CWL
This is an unbelievable website! Stephanie does an extremely wonderful job getting everything she can out there about LM! She works very hard and her determination goes a long way! With being a mom of 3 little kids I don't know where she gets her time and energy to keep it going but she does with many new things coming up all the time!! Steph... Your awesome at this and keep up your amazing work!!
After finding CWL my husband and I no longer felt alone in the LM fight. My child was dx with LM at 6 weeks and we had no idea what this condition was or how hard it was going to be to deal with it. The wonderful team and members of CWL helped us through and gave us answers to questions that even my daughters Drs couldn’t answer. My daughter rec’d a beautiful blanket and socks when she went through her supraglottoplasty, along with kind words of encouragement. The blanket is something that she carries around daily; it became a part of her support system. The support given to us moved me so much that I decided to become a volunteer with CWL to offer moms and dads any help that I could give. I am so thankful for the assistance and support we have received from CWL.
To me CWL is the single, best source of informaton on LM, BM, TM & related illnesses on the web. On my sons diagnosis back in 2008, there was no support groups. Then finally a guiding light appeared, which has regained the sanity of many LM parents out there. For any parent whos child is affected, they will know .... this is a fight. The condition is only now being taken more seriously & ENTs are becoming more aware, this can be a testiment to the hard work CWL do. The additional links to surgery support packs, shout outs on important dates add to the overarching support they give to parents. Thank you CWL.
When we were first given Rylan's diagnois of Laryngomalacia, the first thing I did was google it. I was looking for information & support. We were scared & desperate for someone with experience to help guide & reassure us. We found all of that, and more, in CWL. From the very beginning they were able to help us. Breastfeeding support, related issues (FTT, reflux), sleeping positions, etc - they were able to answer all of our questions. And it was a personal experience. I'm still in touch with the volunteer who very first helped me when Rylan was FTT & having a hard time breathing & feeding. We applied & received a Nap Nanny, which helped Rylan be able to get good rest. We also received formula & formula coupons from CWL. The other members of CWL were able to tell me what to expect from our different appointments - very helpful! CWL has helped us tremendously. I'm not sure how we would've made it thru this first year without their support. I highly recommend CWL for anyone who has a child that has been diagnosed with LM, TM or BM. Thank you CWL!
What would I do without CWL! Not only does CWL provide useful information on laryngomalacia (which helped me diagnose my daughters condition when Doctors had no idea) but also is an invaluable support resource where families going through similar situations can connect and ask questions in a friendly and non-judgemental environment. Laryngomalacia is not something you hear about everyday so it is amazing to find a support group set up for those struggling with laryngomalacia, tracheomalacia, and bronchomalacia. It has made me positive about my daughters prognosis and it is great to get support and advice from others who understand what I am going through. CWL also donated a Chibebe Snuggle Pod to my daughter so I am ever so grateful. Thank you Stephanie and CWL!
CWL has been one of the only comforts my husband and I have had in our daughters short 6 months of life so far. When no one listened to us, and doctors spoke at us, not with us...CWL has been somewhere we can go to ask questions, and just feel like there are other parents and families going through the same things. If others can get through it, so can we. If it weren't for this organization...sure, we would be surviving, but it this experience would be far more scary and lonesome. We are so grateful to CWL!
Before I found CWL I felt very alone, Unless you have been the parent of an LM baby you do not understand what these babies, and parents are going through. CWL has been a great outlet and place to get advice from other Parents who have gone through this or are going through. Thank you Stephanie and CWL members for your support and advice
This nonprofit is a wonderful support group for families struggling with laryngomalacia, tracheomalacia, and bronchomalacia. It has given me the strength I once did not have. I have other Mom's that can help me and understand what I'm going through, whether it's from being the primary caretaker of my kids or from having to deal with incompetent Dr's this group has people that KNOW what I'm going through and it's been really awesome feeling supported and a sense of hope and belonging.
I have not been personally affected by LM until I met Seraphina. She has been through more in one year of life than I could ever imagine. Her strength, love of life and amazing mother have inspired me to help any way I can and, more importantly, to spread the word of LM! CWL began a movement of bringing a rare defect (I dont care what the professionals say-it IS rare) into light and the support it provides is unmeasurable. CWL and its founder, Stephanie, truly are inspirational. If more people were like Stephanie the world would be a pretty incredible place.
My first meeting with the word Laryngomalacia was over 17 years ago and didnt meet anyone who had heard of it back then....... Infact alot of people did not even know what a Larynx was :) then 14 years later my much awaited child had the familiar stridor and I knew exactly what it was thats when LM became apart of my everday life I then had another son 2 years later who also has LM the last 3 years of our lifes LM has been there it hasnt left yet along with its relatives reflux and apnea, desaturation and squeak ...... Its been lonely until i found this fantastic support group full of parents who know just what LM is and how it can affect life I so wish something like it was around when I first met LM thank you Stephanie for creating such a fantastic support group