New diagnosis for baby boy

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EmmaHenry
EmmaHenry Online Community Member Posts: 3 Listener
edited February 2019 in Families and carers

My little boy has just been formally diagnosed with mild CP to the left hand side of his body. 

I only know children with server CP so unsure of what to expect. 

Henry is 13mths (10mths corrected) so still very young. 

Henry was born prematurely at 27w3d. 

3 days after he was born he had a brain bleed leaving him with a grade 4 IVH on the right hand side hence the left hand side “weakness”. Henry doesn’t have weakness but a massive preference of right hand and holds left hand closed if not encouraged to use it. Left leg seems to be only effected if excited or tired. 

As as a result Henry has been closely scanned & monitored so we were anticipating a diagnosis of CP. 

We have OT, PT & Portage involved. 

Henry has just started sitting unsupported but that all at present. 

Really would like like to connect with other parents Mummies or Daddies with similar experiences. 

Feeling very unsure & lonely lonely at the moment. 

Looking for people with similar experiences. 

Comments

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,602 Championing
    Hi @EmmaHenry
    We have lots of members with mild CP as well as members who are a parent to a child with mild CP so I hope you can connect with them.

    We have some videos around getting a new diagnosis that you might like to watch?
    https://www.youtube.com/watch?v=HtFW6sQRX-A

    https://www.youtube.com/watch?v=bxfGNtU8j08

    https://www.youtube.com/watch?v=hRz5qThPneM

    https://www.youtube.com/watch?v=-JMi4dWqHwA
  • Doris_Scope
    Doris_Scope Scope Family Services Posts: 183 Family Services
    edited August 2024

    Hi

    @EmmaHenry

     

    .  I am a parent advisor for Scope for a service that is starting on Monday (25th Feb 2019) called Navigate.  I was wondering if you had found any support groups or were looking for any other support.  

    We are a service for parents who have recently had a child diagnosed with a disability or impairment or going through diagnosis. This support is over a period of six weeks and we are there to support the parent with any emotional issues or practical support that we can offer. We

     have a link to a referral form and also a telephone number for you to contact -   or phone 0808 801 0510 or email navigate@scope.org.uk.  

    I hope that we can support you.
    http://www.scope.org.uk/navigate

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