Cerebral Palsy
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My granddaughter has been diagnosed with CP

Pamela1Pamela1 Member Posts: 8 Listener
edited October 2017 in Cerebral Palsy
Hello my granddaughter was born in March this year my daughter suffered a placenta abruption and our beautiful girl was resuscitated in 15 minutes and the diagnosis is Cerebral Palsy. As you can imagine we are so lucky our girl is still with us and having an early diagnosis I feel can only benefit in us being able to understand our girls capabilities and how we can help, support and understanding her needs. I myself have been a senior carer for dementia patients I have a very good understanding of this illness but would like to hear from other families about CP.  my daughter is 21years old and is doing a fantastic job but I must admit it takes a team to support our girl. She is our miracle. We have been told she would never smile or talk or walk, she does smile very much and everyday is a blessing. She still is tubefed due to no swallow but speech and language are terrific and can see improvement she coughs the tube out several times a week. Her head control is very poor and she tends to arch her back to the right hand side. We are awaiting on a special chair from occupational therapist to help support her back. At the moment things are not clear and we would be grateful for any feedback you can share . I would like to become actively involved with raising awareness for CP like you all this is very close to my heart, thank you all for taking the time to read

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @Pamela1 Welcome to the community.

    Is this your first grandchild? Congratulations grandma! It is so nice to hear you saying about it taking a team, I think any child growing up with a team of people who love them is a very lucky child.

    We have some videos by parents and carers about their children that might help, Ill share them below.  Is there anything specifically that you would like information on?









    Scope
    Senior online community officer
  • Brightsky_101Brightsky_101 Member Posts: 9 Listener
    Hi Pamela1,
    Thanks so much for sharing, Your little granddaughter sounds so sweet, she will continue to amaze you every day, CP is such an umbrella term for so many individual challenges but you sound strong and positive and I admire you and your want to raise awareness.
    I felt exactly the same and between many medical appointments, I hope to help run a local playgroup for little ones struggling with various challenges.
    Many people ask us what is wrong with our son (who is now two) and I always take the time to explain and hope to raise awareness rather than hide away, which at times I have felt like doing but I guess my stubbornness keeps me going.
    Keep getting plenty of support from the health visitor, OT, physio anyone needed, I’m sure her smiles will keep coming and like you we were told we had some things our son “wouldn’t achieve” and he has, very slow progress mind but small progress none the less. Best of luck to you all xx
  • Pamela1Pamela1 Member Posts: 8 Listener
    Thank you for your lovely email and I just think everyday is a new challenge some good days some not so good but I am doing everything I can to support my daughter and granddaughter, everyday is a blessing and she now has a special chair to help her into sitting position. I would be grateful for any knowledge you can pass on , I wish you and your family well for the future and your son sounds an amazing boy . 
  • Pamela1Pamela1 Member Posts: 8 Listener
    Would be honoured if can do anything to help with your group and help people aware that 1 in every 400 children in the UK are born with CP 
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @Pamela,

    We appreciate having you as a member! It's always worth taking some time to look through our recent discussions or in your case our CP group: it may be that you can help and support others, whilst sharing your own experiences.

    Have a lovely day!
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