Tracheomalacia

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Tracheomalacia
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    Hi, yes I have every hashtag. Yes, I do get extremely out of breath from bending over.. yes I do need a wheelchair for bigger places due to lack of air as well as other physical problems.
    However, I just got diagnosed with bronchomalacia, laryngomalacia, and aspiration today. I’m 21 years old, yet I’m getting diagnosed with things commonly found in children. Are there any other adults out there with these issues? If so, what’s your diet like and how did you help your lungs breath better if you were able to?

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    Community Voices

    need reassurance


    #Tracheomalacia

    Last Thursday, my youngest, who is 8 months old, had a consultation with a genetics because he has feeding difficulties and airway difficulties. Quick back story:he was diagnosed with failure to thrive at about 3 weeks. fast forward, he has a floppy airway, aspirates on thin liquids so is primarily fed through a g tube. he does still breastfeed some and has been a champ with puree and honey-thick liquid.
    anyway, so genetics comes back after his physical exam and wants to test him for . ok, great... what is that? well the geneticist said that she thought it could be this because: he has a lazy L eye, is small for his age, had a PDA in his heart and apparently has "undescended testicles"?? well I didnt think babies had testicles that had descended yet so that's news to me. she also thought he had slight low muscle tone .
    I'm freaking out and am in a terrible way today because I cant let go of the thought of him being developmentally disabled. this literally scares the crap out of me. he has hit all his baby milestones but has a little trunk weakness- so is a bit sslouch-y. but he is really close to crawling and lives to be on all 4s rocking back and forth.
    I need some perspective- I need some hindsight from others who have been in the thick of chronic illness with their babies, to know that they CAN turn out smart and funny and "normal". while normal may look a little different are we going to be ok? am I going to be ok? is he going to be ok? suddenly I am so crippled by fear of bad things happening that I think it might help to hear stories of happiness, of recovery and of kiddos leading a darn near regular life.

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    Community Voices
    Community Voices
    Megan Horwath

    I Know You, Tracheomalacia

    I know you, Tracheomalacia. I keep waiting for your name to come up in the “14 letter words” category on “Jeopardy” because I know I’d get the answer right. I know you. I know your friends: laryngomalacia, laryngopharyngeal reflux, eosinophilic esophagitis, dysphagia, aspiration, sublottic stenosis, micrognathia… I know you all. I know you, tracheomalacia, were supposed to cause nothing more than noisy breathing, and you know you’ve caused so much more. I also know we’re bigger than you. We’re stronger than you. We’re more than you. I know you’ve challenged us for the past two years. I know what it’s like to watch my child struggle to breathe. Every. Single. Day. I know what it’s like to listen to my child cough. Constantly. I know what it’s like to watch my child choke with every feeding. I know what it’s like to watch my child stop breathing. Every. Single. Night. I know what it’s like to have to hook my child up to a machine at night to keep him breathing. I know what it’s like to worry about the longterm effects of daily steroids and other medications. I know what it’s like to spend my “free time” at doctor’s appointments or therapies. I know what it’s like to try and let go of the “normal healthy” baby every mother wants. I know what it’s like to secretly be jealous of every mother whose child can eat, breath and sleep normally. I know what it’s like to have even more love for a child than I ever thought possible. I know what it’s like to smile politely when strangers comment on the cuteness of his chubby cheeks when I know that chubby cheek look is a result of micrognathia. I know what it’s like to feel the glares and hear the negative comments from others who think I’ve brought a sick child to a public place when I know nothing about him is contagious. I know all this because of you. I know I can educate others about you because I know you. I know I can support others who are just meeting you. I know you’re going to continue to challenge us. I know you don’t get my son down. I know he’s as spunky, cuddly, smart and crazy as any other 2-year-old. I know our lives the past two years would be completely different if we didn’t know you. I know you don’t define us. We’re stronger than you. We’re better because of you. My son is amazing. Sincerely, Megan (aka Super Joel’s Mom) For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Amanda Shook

    To the Conditions That Force Me to Do What No Mother Should Have to Do

    Dear Laryngomalacia/Tracheomalacia, It’s been 18 months since you made your awful appearance in our lives. It seems odd to me that 18 months ago I had no idea who or what you were, let alone how to spell your name. I now know how to spell it forwards and backwards and know you inside and out. I had no idea 18 months ago how you were going to turn my world upside down. How much you were going to affect my daughter. How you were going to change me as a mother. I had no idea how to care for a child who had LM/TM. I had no idea how to cope with the bomb that doctors just dropped on me. You make me so completely and utterly angry. I don’t think I’ve every felt so angry or had so much hatred until I learned about what you would do to my daughter. You took away my newborn’s breath; you made her turn blue and go limp on more than one occasion. I had to hold my baby down while a doctor took a scope and stuck down her nose while she screamed, gasped for air and looked to me for help. When he was done, the doctor told me, “Your daughter has LM/TM.” I can’t describe the anger I felt from then on. You’ve upset me. You’ve made me wish away my daughter’s first 18 months of life in hopes of something better for her. I was supposed to be enjoying her every minute while on maternity leave; instead I was constantly in hospitals, by her bedside, wishing we never met you. You’ve made my heart ache. You’ve made me cry until there were no more tears left. You’ve betrayed me. LM/TM is supposed to only be noisy breathing; it’s only supposed to be an annoyance for parents, just a sound. You were supposed to clear up in the first three months of her life. We’ve been watching and waiting for you to leave; you were supposed to be gone by now. An 18-month-old baby should have never had as many problems as she’s had so far, taken as many medications as she’s taken, been on a first-name basis with the pediatric staff at the hospital. You’ve made me do things I never thought I’d have to. I never thought I’d have to hear an alarm go off in the middle of the night telling me my baby has not taken a breath in 20 seconds. I never thought I’d ever see my infant lying blue and lifeless. No mother should ever have to give her child CPR, yet you’ve made me give my infant CPR four times. Every night you make me worry she’s going to stop breathing. I hate you for making me feel like that. I will never be the same because of that. A mother should never have to feel that way. A mother should never have to pray every night that her baby wakes up in the morning. You’ve made me crumble into a million pieces any time we get bad news from the doctor. Everyone thinks I’m great at holding it together, but really I’m just great at pretending. All of this is your fault. I’ve come to the realization that I can either resent and hate you forever or I can accept you and try to move on. For now, all we can do is try to keep going, give her medication, go to therapy and hope that you leave my daughter alone soon. Please leave us alone soon, Olivia’s Mom The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .