Tracheomalacia

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    Can’t breathe #Tracheomalacia #bronchomalacia #Laryngomalacia #Costochondritis #Asthma #aspiration

    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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    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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    Tracheomalacia #Tracheomalacia

    I have to admit that I am not as excited about Rare Disease Day 2019 as I have been in the past. It has to do with our 5 year old and Tracheomalacia. It’s just not so great. Right? We will head to Boston in June to hopefully correct her trach and improve her quality of life. I know there are others out there like us?

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    Our rare and mighty little warrior #LaryngealCleft #Tracheomalacia #Centralapnea

    My thoughts are so many. Some days it’s hard to articulate. Our girls are rare and mighty and little. And oh, they look really pretty and healthy. But guess what? They are not. As their mama I stay up and check on them and make sure that they are breathing. Are they cold and shivering or is that a seizure?#Lookscanbedeceiving #rareisrare #neverjudgea
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