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    Hey peeps, my name is Faye. I was diagnosed late April with a respiratory infection, then COVID, now pneumonia. I'm so tired of being sick. I had a tracheostomy for 7 years. It was removed 1.5 years ago. I am disabled.
    #Respiratory
    #Infection
    #Tracheostomy
    #Disability
    #chronic illness
    #tired

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    #TheVoice #Tracheostomy

    Has anyone had a #Tracheostomy did you ever get full voice back? If so how was your experience? Any available therapies?

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    Medical Parenting and Regret

    Insights from a chat with another medical mama tonight:

    👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

    👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

    👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

    👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

    👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

    👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
    ————
    Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

    More on our site at www.aaronandambersfamily.com

    #DownSyndrome #TheLuckyFew #HLHS #HypoplasticLeftHeartSyndrome #CongenitalHeartDefectDisease #CongenitalHeartDefectDisease #PediatricStroke #Stroke #Tracheostomy #subglotticstenosis

    Post

    Insights from a chat with another medical mama tonight:

    👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.

    👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.

    👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.

    👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault - and even though that’s really freaking hard to accept sometimes, it’s really important to learn.

    👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.

    👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz...”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
    ————
    Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.

    More on our site at www.aaronandambersfamily.com

    #DownSyndrome #HLHS #HypoplasticLeftHeartSyndrome #Tracheostomy #MedicallyComplex #CongenitalHeartDefectDisease #MedicallyFragile #HeartDefects #Stroke

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    Medical Cares Will Not Stop Us From Going Out in Public

    When we first came home with AJ, I was really self conscious about doing his medical cares in public.

    I would take his stroller outside of the restaurant to suction him. I would schedule our trips into town and stores to be in between his meals and meds so that I wouldn’t have to do them in public.

    It wasn’t because I didn’t know what I was doing, it was because I was afraid of offending someone else. It was because I had read stories from other parents who had been confronted by strangers, or were even asked to leave a restaurant because caring for their kid was “gross”.

    I really wish I could go back to the me who thought that way and shake some sense into her.

    First - I was setting a ridiculous example for AJ, showing him that he should essentially be embarrassed by his medical cares. I don’t want AJ to grow up thinking that he should try to hide himself from the rest of the world for any reason - medical or not.

    AJ has just as much right to experience the world as anyone else. I would actually argue that he has fought so hard for his life that he deserves those experiences more than most. His medical needs should not hinder him from getting the most out of his life - even if that is just a trip to Target for groceries. (Well, except during cold/flu/rsv season when we go into lockdown, but that’s a whole different story!)

    Second - If AJ needs to be suctioned, then he needs to be suctioned. If it bothers someone at a table in a restaurant, or in the waiting area at sports clips, then oh well. And the same can be said of him getting his meds and food.

    Maybe it sounds harsh, but those meds and cares are what keep him alive. If it ruins someone else’s meal to hear a suction machine then oh well. That person will live just fine without finishing their loaded mashed potatoes. AJ, on the other hand, might not live without his cares.

    Third - People in general really aren’t mean. They may look quizzically at you, or do a double take. They may turn around to see what the noise is. They may even ask a question or two. But we haven’t had one person say anything negative to us at all while we have been out and about.

    In fact, we’ve had more of the opposite. People will tell us they think it’s amazing that we are able to get out and see the world with AJ. Or they will tell us how cute or sweet he is. We’ve even had strangers anonymously pay our bill at restaurants.

    Ultimately, if someone has something negative to say or are offended by the medical cares he needs to have done while we are out and about, the real problem is that they’re missing out on seeing the truly amazing kid that’s right there in front of them.

    —-

    #DownSyndrome #trisomy21 #t21fam #TheLuckyFew #TrachMom #Trach #Tracheostomy #Gtube #blendeddiet #blenderizeddiet #medicalmama #SpecialNeedsParent #Awareness #Acceptance #targetrun

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    Reverse Trick or Treat for Those Who Don’t Eat #Gtube #Autism #SpecialNeeds #Tracheostomy #FeedingDisorders #FeedingDisorder #FoodAllergies

    AJ has oral aversion. He is physically capable of eating things by mouth, but he gags when he tries, which is why he is still considered gtube dependent. We came up with the idea of reverse trick or treating just for him.

    We could have simply taken him out trick or treating and pocketed the candy ourselves, but last year I was participating in #last90days and I had decided to give up sweets. Having a pile of candy in the house wouldn’t have been a wise idea.

    We decided that AJ would still get the fun of going door to door, but instead of getting treats, he would be giving them out.

    We created some printable cards that had a cute poem about the idea of reverse trick or treating on the front. On the back we included another poem and an image that showed how to sign “Thank You”

    People were initially a little confused, but it went over really well. It was really amazing to see AJ getting to interact with others in the community and even giving them the ability to sign back to him.

    This year we plan to do it again, but after being asked by so many people last year, we also wanted to share a copy of the printable file with others who may be able to use them.

    We reached out to Brad at 35 Corks Art Studio who makes the most AMAZING clip art for ASL signs. Not only did he give the green light to share, but he updated the image to incorporate AJ’s costume this year. Also, credit needs to be given to Melissa at Dorky Doodles who made the festive banners.

    (Spoiler Alert: he and Averie are going as Addams family characters)

    Inside of the file there are three different options for the front card, also per request from some of our friends.

    1) I can’t speak to tell you that I’m not able to eat, but I sure do love to reverse trick or treat!

    2) I can’t speak to tell you that I don’t like to eat, but I sure do love to reverse trick or treat!

    3) We enjoy dressing up and wanted to do something neat, so we are here to reverse trick or treat!

    The cards are sized and spaced so they can be printed on the front/back if desired.

    To download a printable copy - see the link to the post on our website here: www.aaronandambersfamily.com/2019/10/21/reverse-trick-or-tre...

    #Trickortreat #Nonverbal #nonoral #Gtube #oralaversion #adaptiveholiday #Inclusion #freecontent #SpecialNeedsParenting #Autism #Allergies #nocandy #Halloween

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    My Vocal Chord Paralysis

    When I was two years old a Tumor was found inside of my chest. It spanned from the base of my brain to my lungs and largely encompassed my airways, and trachea. Many surgeries were performed in order to remove the tumor and improve my breathing, which included a tracheostomy and vocal chord lateralization.

    No fault directed towards the amazing doctors that have saved my life more times than I can count, but it was those procedures that caused my Vagus nerve to be permanently damaged, resulting in paralyzed vocal chords for the rest of my life. While I am so very grateful for having been given a chance to live a life at all, I will say that dealing with the after affects of these medical complications has certainly been a long and trying road.

    Having to grow up with constant hospital visits, a voice that could only whisper, and a slew of scars across my body, was a rather hard concept for me to accustom to. The unusual nature of my voice made basic socializing difficult, and being a typical self conscious girl, it took years to accept the appearance of the deep red scars I was left with.

    But with every comment and question and assumption of my voice I have had over the years, (everything from asking if I was mute, to being told I could not communicate properly with my future kids) there came a point when I finally came to accept the fact that not everyone Will understand. And that is ok. It really is.

    After undergoing over 30 surgical procedures throughout childhood, I am currently 19 and have managed to be surgery-free for a full five years. Having these experiences has been a battle, one that I am still discovering how to fight each day, but I am simultaneously grateful for how strong the continuous fight has made me. It has given me an additional sense of empathy for others who struggle as well, and I always am able to count my blessings when I remember just how lucky I am to be as well as I am today.

    I encourage all of you out there to remember that no matter what trials you may be faced with right now, your fight matters! Not only to you, but to every single person you encounter.
    Let these grating experiences polish you, not tear you apart
    Allow each and every scar, either surgical or unseen to the eye, to become part of you (because dang you deserve be proud of your fight! Every bit of it)

    And wear each scar with pride, knowing that you are forever stronger than what has tried or will try to overcome you.

    #VocalCordDysfunction #MentalHealth #Surgery #Scars #Tumor #Tracheostomy

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    #Tracheostomy preemie

    It’s been 4 days since sweet girl had her tracheostomy surgery. We just found out she will have to go everywhere in an ambulance. Anyone else have similar issue?

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    My Thoughts on my Disability

    "If you could have the opportunity to walk, would you take it?" This is the question that popped in my mind when I was lying in bed one night. My immediate answer to this question was, "Uhhh yeah of course!! Why wouldn't I?" But, the more I thought about it, the more I wasn't sure. Now, I know this may sound crazy. But, all I know is my wheelchair. I don't know what's it's like to walk, so I don't really know what I'm missing. Also, I feel like my disability gives me the ability to relate to people on a deeper level and help them. All my life, I've always had a heart for people and I have my disability to thank for that. I know what it's like to hurt so bad, you think you're dying. Yeah, I have my bad days where I scream and cry, but I get right up because there's a world out there full of people and I'm hoping to get out there and help them.❤ #Disability #Wheelchair #Tracheostomy

    2 comments