pediatric stroke

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    Funny interaction

    Dealing with the medicaid office can be stressful. I had to call them for the first time in my life but certainly won't be the last, but I thought I would share a little snippet of the conversation to bring a little bit of joy, cause I sure giggled about it later:

    Worker: are you disabled?

    Me: yes.

    Worker: How long have you been disabled?

    Me: since birth.

    Worker: *shocked* excuse me? Since birth?

    Me: *confused by reaction* yes. Since birth

    This was genuine shock, the worker wasn't trying to be mean or judgemental. You would have thought that she never met someone that was born with their disability... Maybe she hadn't. Maybe she was surprised how calm and matter of fact I was and not shy about it. I don't shy away from facts. Still, the experience of it was so funny to me. I hope it brought a little bit of a smile to your face
    #CentersForMedicareAndMedicaid #Disability #MentalHealth #HealthInsurance #funny #cerebalpalsy #Stroke #PediatricStroke

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    An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

    Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

    I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

    On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

    The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

    Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

    Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

    I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

    I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

    I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

    The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

    I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

    Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

    My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

    I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

    The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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    I am new to The Mighty

    Hi, my name is Alex Hatch. I had a stroke when I was 10 & I never fit any of the normal molds with my disability. If anybody has ever felt this way please reach out to me. I would love to exchange stories with you & let you know that you are not alone.

    #TheMighty #mystory #Stroke #PediatricStroke #advocate

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    Visit website for recently discovered PAN Vasculitis.

    This type of Vasculitis is thought to affect 1/3 of those affected by PAN Vasculitis. The genetic links to what is termed DADA2 were discovered in 2014. Very interesting story about the discovery and the hundreds of patients (most young children), families, physicians, and researchers internationally affected. There is much interest that other forms of Vasculitis may be genetic as well. New cases of DADA2 are discovered regularly.

    This new field may be of interest to many current Vasculitis patients and medical professionals. Read the story of how a Nashville doctor discovered that two of his daughters are affected and his subsequent work in medicine and advocacy around the world. Read about the interesting patients, families and researchers involved and how they advocate for the benefit of all. This is inspirational for all of us suffering with rare diseases.

    New research appears often - symptoms range widely as do the age groups and types of genetic abnormalities affected. There are both early onset and late onset disease.

    The website for dada2.org is http://www.dada2.org. There is a group for patients and families on Facebook. #DADA2 , #RareDiseases , #Vasculitis , #GeneticDisorder , #GeneticCounselors , #GeneticDisorder , #GeneticTesting , #Rheumatology , #PolyarteritisNodosa , #PediatricStroke , #PediatricHypertension , #PediatricLiverDisease , #ADAdeficiency , # adenosine deaminase2 deficiency

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    Snow Therapy!


    We had our first snow day yesterday – not even halfway through December!

    The local hall took in the older kids in the afternoon and provided pizza and bowling.

    Meanwhile, I felt that AJ needed to experience the snow. But coming off of being sick and knowing he doesn’t tolerate the cold well, I didn’t want to risk taking him outside.

    So we brought the snow inside instead!

    I did make him wear gloves. He really wasn’t sure what to think at first.

    He eventually decided it was safe to taste test… And his nurse helped make a snowball that they played catch with until it fell apart.

    All-in-all, the snow was a win. He truly has been doing so much better at sensory activities lately, and this was a great example of that.

    My carpet got a little wet – I’m sure a more on top of it mom would have thought to move to the kitchen floor instead – but he had fun.

    In the midst of a way-too-early-in-the-year snow day, it was just what I needed to remember that snow isn’t actually the root of all evil – even if the general consensus on social media seems to say so!

    #DownSyndrome #HypoplasticLeftHeartSyndrome #PediatricStroke #PhysicalTherapy #OccupationalTherapy

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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

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    Can’t stop thinking about the fact that they don’t know why I had my stroke at the age of 6 (in 1993) and they don’t know why I had my TIA in 2010.... it’s so frustrating!!!!! 🤬 #PediatricStroke #Stroke #TransientIschemicAttack #MiniStroke

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