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I am a mum to an awesome seven year old girl with choreo-athetoid cerebral palsy

SystemSystem Posts: 520

Scope community team
edited October 2019 in Cerebral Palsy
This discussion was created from comments split from: New member.
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  • ChristineHughson7ChristineHughson7 Member Posts: 4 Listener
    Hello my name is Christine and I am a mum to an awesome seven year old girl with choreo-athetoid cerebral palsy. Happy to speak with anyone who is starting out on the journey - getting their heads round diagnosis and managing all the appointments etc. I remember how overwhelming it can feel at the start 🙂
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  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,731 Disability Gamechanger
    edited October 2019
    This post was from @Ails

    Hi @ChristineHughson7 and welcome to the Community.  It is nice to meet you and have you on board!  Thank you for sharing with us.  I am sure you will enjoy your time on the Community and meet some new friends along the way.  A lot of members will find your contributions to the Community really helpful as getting a diagnosis and managing appointments, etc, is really stressful so thanks for offering to help.  Your assistance is really welcome!  Lots of lovely, friendly people on here to chat to.  If you need any support/help with anything at all then please just let us know.  All the best.    D
    Scope
    Senior online community officer
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  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team
    edited October 2019
    Hi @ChristineHughson7
    Great to meet you and welcome to the community. I live with quadriplegic CP so I can share my lived experience from that perspective but your perspectives as a parent are invaluable! I'm going to tag some members that might like talking with you about your experiences. @Mum1490 and @3Mamabear

     



    Scope
    Specialist Information Officer - Cerebral Palsy

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  • Mum1490Mum1490 Member Posts: 23 Connected
    Hi @ChristineHughson7 how are you? And welcome :-) how’s your little girl doing? My daughter is 5 and was diagnosed last year with spastic diplegia cerebral palsy it’s all very new to us still my Amelie has her struggles and bad days but she’s a trooper and keeps smiling 👍🏻❤️❤️
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  • ChristineHughson7ChristineHughson7 Member Posts: 4 Listener
    Hello everyone 😃

    We are doing okay, unfortunately Sophie has a cracking chest infection and is now on a months worth of antibiotics which can affect her gut, which in turn knackers her sleep so the last week has been a tad sleep deprived. Am a bit of a mombie today! 

    Hi @Sam_Scope and @Richard_Scope thank-you for the kind welcomes, happy to help out, I was here when Sophie was younger as a “lurker” 😂😂 but never joined as there was too much else going on. 

    Hello @Mum1490, how are you doing? We got our diagnosis very early as from Sophie’s birth we knew there had been extensive damage. I can imagine you may well have been round the houses these last five years trying to make sense of everything. If there is anything you would like to know, or ask, please just reach out. Same goes for you @3Mamabear, I’d be delighted to speak with you. 

    Much love and tea filled wishes from our snotty, coughing couch nest 🥰
    christine 

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  • 3Mamabear3Mamabear Member Posts: 15 Connected
    @ChristineHughson7
    Hi, ahh I hope your daughter feels better soon and you all get a better nights sleep soon too! 
    We have an appointment with E's physio next wednesday for him to get his AFO's. It's only now dawning on me that shoe shopping especially waterproof shoes may now be an issue. Pre school like a pair of wellies to stay there but I've now read on a fb page wellies and AFO's are not compatible ahhhhhh!! Been frantically looking up waterproof overshoes, found gorgeous 'Butler' ones but at £70 a pop I dont think that's a goer. 
    Anyway, random waffle over ha! Just wanted to say hi! Xxx
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  • Mum1490Mum1490 Member Posts: 23 Connected
    @ChristineHughson7 aww no hope sophie is ok. Nothing was picked up when Amelie was born but she had a horrible birth after 3 days of heart decelerations I was told I had to labour myself which ended In Amelies heart rate not coming back up and I bleed her cord was tightly wrapped around her neck 3 times 😔 I only found out from community midwife the bleeding was caused by placenta abruption. When Amelie started walking she has always been on top toes and when she started nursery it became very clear as she couldn’t keep up with peers and she seemed always to be shaking and falling and feet and hands sometimes look more inward then we was sent to GOSH for an MRI. Are there immunities low? As I’ve been told yes by a nurse and no by some but she’s always poorly.. she too is poorly spent yesterday at local hospital 🙁 xx
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