September 16, 2014
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.
MY ROLE:Client Served
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!
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MY ROLE:Client Served