our little girl diagnosed with Cerebral Palsy and feel completely at a loss.

cordypants
cordypants Online Community Member Posts: 13 Contributor
edited January 2018 in Cerebral Palsy Network
Hi there. We have just had our little girl diagnosed with Cerebral Palsy and feel completely at a loss. Was hoping maybe to connect with people that are in similar circumstances and to try and gain some knowledge and support through the journey ahead. Aside from that I’m 36, Work as a secretary, my little girl is 16 months old and called Flora. Hello

Comments

  • Lasian_Alumni
    Lasian_Alumni Online Community Member Posts: 650 Empowering
    Hello @cordypants, welcome to the community! 

    We have some     information about CP as well as a page For families with just diagnosed disabled children. You may also be interested in some of our groups and discussions for parents and carers.

    I hope this helps. If you have any questions, please do get in touch.
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @cordypants
    We have some videos about getting a diagnosis for your child that you might like to look at

    https://www.youtube.com/watch?v=bSpkYnOMe8k&feature=youtu.be

    https://www.youtube.com/watch?v=glACggVD_kM&feature=youtu.be

    https://www.youtube.com/watch?v=DXix-yi1uAU&feature=youtu.be

    https://www.youtube.com/watch?v=6T6-346O0hw&feature=youtu.be
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    @Pamela1
    @esthermb1996
    @andie50
    @zoe123
     You have all spoken about the shock of a new diagnosis  before, can you offer @cordypants any support?
  • wheelygirl
    wheelygirl Online Community Member Posts: 23 Contributor
    Hey it does get better 
  • Pamela1
    Pamela1 Online Community Member Posts: 8 Listener
    Hi my granddaughter was diagnosed early on with CP after my daughter had a placenta abruption, she is now 10 months old and although she still has a feeding tube she is coming along. It can be really challenging at times but having a good support system and people that are going through exactly the same as you, it helps to talk as all children are different as you know , we were given the worst case scenario that she may never smile, walk, talk etc, our girl is doing great laughing, starting to roll over such a delight, each day is different and really does take a team of us but advice and resources are available use them to give your child the very best start, I wish you well for the future 
  • esthermb1996
    esthermb1996 Online Community Member Posts: 18 Contributor
    Hey, I completely understand where you’re coming from. Is it something you knew would be a possibility or was it just out of the blue? It really does get easier and even though it is a massive deal, having the diagnosis opens you up to the best support possible. I’m sure Flora is a beautiful happy baby. I have a daughter who is a similar age. She is one next week and we got the diagnosis at 6 months. Just speaking out to someone who understands and has been through similar is really helpful because at first everyone I was speaking to sympathised but had no clue what I was talking about. Wish you and your daughter well x
  • cordypants
    cordypants Online Community Member Posts: 13 Contributor
    Thank you so much for your message. It came out of the blue really from around 9 months from when she wasn’t meeting any of her milestones. She had a brain ‘insult’ following birth though so it has apparently been because of some damage that occurred from that. The medical team we have seem to be doing a great job & the physio is just amazing I just hoped joining this site would put me in touch with some other parents who are going through the same & to maybe share some advice/ tips etc. I also wish you, your family & your daughter well xx
  • Richard_Scope
    Richard_Scope Posts: 3,763 Cerebral Palsy Network
    Hi @cordypants
    I can't really add to the great advice that has already been offered but you certainly have come to the right community for support and advice.
  • AilsaS
    AilsaS Online Community Member Posts: 6 Connected
    I am 21 years old, and I have CP. From my experience, it isn't that bad. How your daughter is affected depends on what type of CP she has.
  • CaderMac
    CaderMac Online Community Member Posts: 103 Empowering
    Hello @cordypants and Flora (what a beautiful name!) 

    I just wanted to share this blog with you as it is one of my favourites. Fifi + Mo is a lovely blog written by an American lady all about her journey with her adopted daughter Finley, who has cerebral palsy. 

    x
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @cordypants
    We asked our twitter followers and these are some of the responses.












  • Richard_Scope
    Richard_Scope Posts: 3,763 Cerebral Palsy Network
    edited January 2018
    Hi @cordypants and Flora

    When we first receive a diagnosis it can seem and feel like the end of the world. It was for my mum too. She was told the very worst case scenario. In fair ness I think medical professionals have to do that. May I ask what is Flora’s diagnosis?
  • cordypants
    cordypants Online Community Member Posts: 13 Contributor
    I am completely overwhelmed by the responses. Thank you all so much for taking time out to send me a message & comment, it really is helpful to know people are out there to offer & share advice. I hope one day in the future I will be in the same position to be able to offer my knowledge to someone.
    flora has been diagnosed with PVL causing Cerebral Palsy. I am not sure of the level yet but physio has told me that they will prob be able to grade it by around the age of 2-3. It seems currently that it is mainly gross motor affected as Flora is unable to sit, roll, weight bear etc but she is very communicative (no words yet) and has managed to progress to lumpy textured foods which is great. 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @cordypants

    Another response on twitter


  • Bevkendall
    Bevkendall Online Community Member Posts: 2 Listener
    Hi my daughter has been diagnosed too. She’s 2 now.  I know what to expect as I have it too . It does get easier though for us mums. CP is a very broad term and people have difficulties in different ways .  I’m sure you will love, care and be the best mum for  her .  It makes my daughter even more special.  I’m sure your daughter  is too . 
  • loulou1949
    loulou1949 Online Community Member Posts: 2 Listener
    Hii Cordypants, my daughter, who has CP, is now 38.  We were told she would be a "Vegetable", yes - they really did say things like that in 1980.  Now she is the singer in her band (Nobody's Perfect - a disabled group ) and she has written and sung her own compositions in The Albert Hall, the Royal Opera House and St. Paul's.  She has bought so much love and happiness to all our family and many friends.  It has been, and continues to be, a very hard journey, fighting all the way, and I would not wish it on anyone, but looking back, it has also been such a rewarding journey.  I wish you lots of love, luck and support of good friends, and hope to read in the future that she is reaching the milestones in her own time and continuing to amaze you.  Progress in our case was slow, but has never stopped.  I'll look out for postings from you. Take a day at a time, and celebrate every tiny advance.  Very best of luck.

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