Cerebral Palsy

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    What is your perfect Christmas list?

    'Id like everyone in the group to share what they would like for Christmas in relation to their Cerebral Palsy and their journeys. It would be quite interesting, in my opinion.

    My Christmas wish list

    Brand new wheelchair More understanding toward this condition More accessible places in hotels less ableism #CerebralPalsy

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    THE GIVING SPIRIT.

    as we approach the Christmas holiday I wanted to do something to give back and pay it forward. So I went to my local BARNES AND NOBLE and donated a book to CONNECTICUT CHILDREN'S MEDICAL CENTER. I was a patient at CONNECTICUT CHILDREN'S MEDICAL CENTER for many years due to Cerebral Palsy. I had many great doctors and therapists from there that I remain true friends with even still today. Connecticut Children's Medical Center is the best hospital around. I use to attend CP clinic there once a year on Thursday because that was when CP clinic was held. I owe so many grateful words to Connecticut children's medical center if it wasn't for them helping me with my Cerebral Palsy throughout the years I don't think I would still be on my crutches today aka my sticks I will continue to give back to them for the rest of my lifetime because they gave me a true gift and miracle and it's the least I can do to show them what a special place they truly are. final thought show your giving sprit to those less fortunate this holiday season and it will make a world of difference

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    Voicing Difficult Decisions As A Mother Of A Child With Cerebral Palsy

    Difficult decisions are hard to make at the best of times, but when decisions must be made quickly and involve complex matters outside of one’s expertise — with potentially life-altering consequences — the stakes are sky-high. This is the position I found myself in when my daughter was born three months premature over three decades ago.

    Unless it was an emergency (and there were a few), the doctors explained every situation and gave me their professional recommendations. Ultimately, I had to decide how to proceed, so I made decisions the only way I could — by relying on my instincts that were fuelled by love for my teeny, tiny baby.

    With the facts, risks, and probability of outcomes explained to me, I relied on the way I was raised. My mother always evaluated medical recommendations against common sense. Once she listened to the doctor, she would listen to her brain, gut, and heart before proceeding. Though emotions were high and I was exhausted, I thank my mother for this framework; it was this insight that helped me make difficult decisions, built on a foundation of love.

    I made the first difficult decision before my daughter was born. I chose not to proceed with the recommended cervical cerclage (or “cervical stitch”) to prevent premature delivery; I decided to be put on bedrest instead. I told the doctors at the training hospital that if my daughter needs to come out, let it happen. I was in bed for two weeks before giving birth, and more than three decades later, I stand by that decision.

    In my first post on The Mighty, “Why I Didn’t Ask ‘Why Me?’ When My Daughter Was in the NICU”, I explained that I took notes for the first 121 days of my daughter’s life and I summarized her first few days on Earth from the notes I made in the journal I kept at the time. When we left off, I was told of her brain bleed, but we didn’t know anything more, so I continue the outline of her life below.

    Saturday:

    Everything is stable.
    An ultrasound is scheduled for Monday.
    Respiration is 20

    Sunday:

    The doctor says that she is doing well and all vital signs are normal.
    Respiration: 14

    Monday:

    Happy 1st-week “birthday,” baby girl!
    My daughter had an ultrasound. I was told that the bleeding is drying up.
    Doctor says he doubts there will be anything to worry about.
    Respiration: About 10

    Tuesday:

    My daughter’s brain bleed was categorized as a 2 (of 4). I was told she will have some setbacks, but they don’t know to what extent.
    They took the line out of her belly.
    By the evening, she was feeding 5 CCs
    Infection starting. They took a spine test. Results are expected in 48 hours.

    Wednesday:

    Feeding is up to 8 CCs. She is not feeling good and is very pale.
    Given bradycardia medicine.
    Respiration: 20

    Thursday:

    She has a fever from the infection.
    Results from the spine test came back negative
    Took out intravenous
    Feeding is up to 10 CCs.
    Respiration: 12

    Friday:

    She is given antibiotics with a needle every 24 hours.
    Weight: 810 grams (down from 850 grams at birth)
    Feeding is 10 CCs
    Respiration: 14

    As a mother, it is so hard to see your baby in the isolette, unable to hold her. My baby weighed under two pounds at birth, and her vital signs (hemoglobin and oxygen levels) had to be tested by analyzing a drop of blood at least once every day. I don’t know if they must do the same thing these days, but back then, the nurse would put their hand through the opening in the isolette, and poke my baby’s heel with a needle (though I know it was proper medical equipment, it wasn’t a needle used to draw blood — it looked like a sewing needle). The nurse would then squeeze her heel to collect a drop of blood.

    Each time, her little mouth would open in a silent scream. (She was born so early that her cries were silent.) Though having her heels poked to collect blood was the least of her struggles in those early days, when no one was looking, I cried for both of us.

    One of the many nurses who cared for my daughter saw me flinch when she was collecting blood from my baby one day. She turned to me, and said matter-of-factly, “You know, she doesn’t feel it.”

    I could tell that she believed what she said; it was alarming. I looked at her, horrified. I couldn’t believe that she said that as it was obvious that my daughter had her mouth open and was crying in silence.

    Though making difficult decisions is taxing, it almost got easier that day, because, from that moment on, I knew that I would be her voice.

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    HAPPY HOLLY DAYS.

    As we approach the Christmas holiday I'm sitting at my iMac I'm reflecting on all the things I have to be grateful for this Christmas. The number one thing that I'm grateful for this year is family and friends. You see the reason I put it in those words is because when you find out that you have Cerebral Palsy for the first time your family and friends are first and foremost always there for you no mater what at least that is how it has always been for me. I truly believe that if it wasn't for them and their support I truly wouldn't be doing as good as I am today.As I've said before when I found out that I had Cerebral Palsy I suffered a profound sadness for the longest time. once I understood what my Cerebral Palsy entailed on a daily basis I began to accept it. I have to admit to this day I still wish very much that I could walk on my own but even if that wish never comes true for me I still have many things that I've accomplished in my lifetime that I'm grateful for and I have to reflect on that and keep holding on to hope. that I will accomplish more goals that I set for myself.Happy holidays everyone may you all have a MERRY CHRISTMAS AND A HAPPY NEW YEAR

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    MY LUCY.

    Tomorrow is a special day in. the LAROSE household my Lucy is turning 4 years old My Lucy Is the most special person in the world. Lucy helps me with many things in my life but the one thing that she helps with most is my Cerebral Palsy. I consider Lucy to be my very best friend. I say that because Lucy is the best gift that I have ever received in my lifetime. I truly believe that Lucy was sent to me from heaven because she is a combination of all my animals hat I've had in the past. Having Cerebral Palsy can be Challenging at times but having Lucy makes it 100% better . If it wasn't for my sister Shelly I would have never met Lucy. My sister works at an animal hospital and one of her clients gave me Lucy. I owe Shelly a lifetime of gratitude for bringing Lucy into my life because Lucy is truly the ultimate gift. Thank you Lucy for being your special you. Love you always my girl.

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    why don't people understand my extremely high startle response?

    #frustrated people don't understand why I jump so high I have trauma, cerebral palsy traumatic brain injury very bad combination!

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    ¡" Ugh! My Insomnia/Anxiety/Depression Are Driving Me Nut's" !... IDK What 2 Do... #MajorlySleepDeprived

    ☆ " Since I Started Shifting My Hour's To Stay Later Passed My Off The Clock Which Is Actually 8AM-2PM... My Shift's Seem To Be Getting Longer And My Workload More Stressful... I Honestly Cannot... Stand For More Than 3 To 4 Hour's... Due To My Crappy Body My Lower Back Pain Is Chronic... Because I Was Born With " Scoliosis "... And My Leg's And Feet Are The Worst Chronic Severe Pain... Due To My " Cerebral Palsy " Since At Birth... I Live With Severe Chronic Pain... And It's Also Another Full-Time Job... This Is Why I Don't Wish To Have Anyone In My Life Currently... I Hide How I Really Feel Inside.. The Outside Is Unavoidable.. I Walk With A Limp... And Drag My Feet When I'm Chronicly Tired... So Now I'm Having Issue's With My Hand's. I Use Them Alot... It Never End's Something I Feel Like I Just Want To Dissappear... " ☆ #Depression #Anxiety #ChronicPain ☆ SKADI KVITRAVN ☆

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