This week has gone in a bit of a blur....I've spent hours on google trying to find a 'cure' for Cerebral palsy...with no success obviously.I've read and read until I couldnt read any more about CP and still feel none the wiser.Ive even dreamt bout Cerebral palsy and physio appointments etc.
Sad I know but just wanted to find 'something' that would make it all better.I dont know how i feel right now.....alone,confused,grieving for the loss of hope for a 'normal child' one day.Trying to get my head around the fact that this is for life,its not a condition that will go away.
Also remembering too...something which made me feel a little better in some way.I had always wondered whether her horrible experience in Leicester had led to CP (she had some really close calls whilst on the vent...we are talking sats dropping to 19%!) I KNOW that she came out of that experience a different baby...something of her mentally was lost at that point but I also remember in special care being concerned and asking the doctors why she couldnt straighten her legs....you notice this king of thing when you are holding her legs for a nappy change.Anyway the Doc really didnt have any answers and dismissed my concerns saying that it was probably because she'd been curled up in the womb....she was 4 months old at this point.Plus she always faced tha same was and didnt turn her head to the other side at all and had a right side/hand preference,she can=me off CPAP and breathed with her tongue hanging limp out of her mouth......NOW I see that my concerns were real and showed signs even then of her CP .I just didnt know what it was,just that something 'wasnt right'.
I have videos of her and now,looking at them it seems so obvious.....isnt hindsight a great thing.
Anyway at least I feel reassured that it didnt happen in Leicester although it probably didnt do her any good.
Yesterday i got my carers allowance and I have blown most of it on buying her some clothes which fit lol.... age 3-4yrs (big girly) and today some toys which i hope will stimulate cause and effect.
I got an Early learning centre drum which when you tap it makes a noise and light up different colours, a train which has balls in it which popp about when she pushes it and a spinning top which has coloured balls in it when the top is pushed down and plays a tune....she hasnt got the strength/co-ordination in her arms to push it down though so that isnt so good at the moment as I have to do it for her.maybe in time she will do it.
Finally our birth to 3 service (portage equivalent) has picked up her caseload and will come out for the first time on Wednesday.Im so so pleased this is happening as she is really behind now....well I know that she is likely to always be 'retarded' according to her diagnosis but all the same it bothers me how uncommunicative she is etc...............this is probably going to sound overly dramatic but i just have this feeling something else is going on....like an autistic spectrum disorder,there I've said it.This has been on my mind for months.....I KNOW there is something else happeing with her....its not just that she doesnt communicate,its that she has no desire to,she hates being touched and will pull away from you if you touch her hand,she avoids eye contact,she gets ...like sensory overload.she has never wanted to be hugged or kissed.None of this is normal baby behaviour is it.
maybe these questions will be answered when we see the paed in March....maybe its just nomal for cerebral palsy children??who knows.
It would be so nice to be able to sit down with someone who has a child with Cerebral palsy and chat through some of these things...and how they coped with their child diagnosis too.I know a lovely couple who have a little boy who is 6 with CP,they are SO together though about the whole thing,they know what he is entitled to and fight for it accordingly and just generally seem to be doing so much better than me with everything,where as me...well i just want to cry and feel so overwhelmed and alone at the moment. DH seems pretty ok with it after the initial freak out,but I feel guilty about it and a thousand other emotions in between.
Im going to end here before I end up crying again.