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21 Reviews
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June 26, 2014

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June 26, 2014

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!

Ways to make it better...

If I had to make changes to this organization, I would...

Get their word out to more people!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2014

November 12, 2013

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1 previous review
April 18, 2013

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... more

November 12, 2013

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.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

April 18, 2013
1 person found this review helpful

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!!!!

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

August 17, 2013

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August 17, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

July 21, 2013

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July 21, 2013

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

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

July 17, 2013

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July 17, 2013

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.

Ways to make it better...

If I had to make changes to this organization, I would...

i would like a dutch chapter in the Netherlands.

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

February 15, 2013
2 people found this review helpful

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February 15, 2013
2 people found this review helpful

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

February 15, 2013

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February 15, 2013

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

January 25, 2013

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January 25, 2013

Hello,
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!:)

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

January 24, 2013

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January 24, 2013

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!

More feedback...

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

August 20, 2012

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August 20, 2012

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!

More feedback...

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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