Wednesday, 28 January 2009

Time flies

I really must get better at updating this blog,life seems to be a bit of a whirlwind at the moment with so much going on.

First Seri, well she has now finally been seen by the 0-3 service (portage) after being on the waiting list for months.They have come out and done a full assessment basically physically she is at about 8-9 months and mentally about 3 months with hearing and understanding being of biggest concern.They gave me a copy of the assessment to take to my next Neuro appt as there are concerns that she has 'another learning disability such as autism'....well no surprise there then lol!...will wait and see what happens with that one.She has also had her EEG done at birmingham,dont know the full results yet but they have now started her on Diazepam twice daily to try and control the muscle spasms that she is still having despite being on the maximum dose of baclofen.I was concerned in case it made her zombie like or tired all the time......I neednt have been as it doesnt at all.I give her the last dose at 5pm and then she has baclofen at 8pm.Two nights in and she has slept throughboth nights! never ever has she slept through the night so I wonder now whether her restlesness was more to do with spasms....let the sleep continue!!!!! :-)

Samuel meanwhile has been put on Montelukast (singulair) to try and control his gut symptoms as his last test results showed that he is still anaemic and STILL testing positive for blood in his stools :-(.It has improved things re his runny poo and bad excema but he hardly eats anything at the moment and doesnt want to drink his milk either so i can see a downward trend in weight again,his ribs are showing and he seems very pale.School whacks him out and he falls asleep in his buggy most days on the way home.Dont have any magic answers,just carrying on till next appt in Feb.

Will end this post here as kids are mucking about upstairs instead of going to sleep...will leave with a lovely pic I took of Seri today...oh and the smudges on her face are wispa bar...she pinched mine and smeared it on her face,she didnt realise it was food...and yes I did pinch it back!! :-)

Saturday, 10 January 2009

Just stuff really..

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 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 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 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.

Thursday, 8 January 2009

A full diagnosis

apologies for not updating sooner...we were struck down by this awful flu bug and so wiped out for Christmas and only just feeling 'back to normal'

Anyway we saw Seraphinas new Neurologist at Birmingham Childrens hospital on Monday to get a more in depth diagnosis etc rather than the 'we think she has cerebral palsy'.Was really hoping that they were wrong to be honest. Anyway,Neuro was lovely and took lots of time to examine her and then called in another consultant (so we knew then news wasnt good) anyway to cut a long story short she has been formally diagnosed with Spastic diplegic Cerebral palsy with left Hemiparesis and severe progressive microcephaly. from what I can understand from that her legs are worse than her arms (although her arms are affected) and her left side is worse than her right,also her head growth is next to nothing (1cm in the last 12 months) which is suggestive (their words not mine) of severe mental retardation. We are going to be admitted for overnight EEG as he suspects that some of her sleep problems are due to seizure activity and she will also have a normal awake EEG.oh, also got to have urgent hearing test and speech and language input as she is communicating very little so he is concerned about that.She also needs to have botox in the back of her legs. He doesnt think she can hear properly and we already know her sight is poor.He didnt think another MRI pr CT was worth it as its already known she has enlarged cystic right ventricle and PVL,siad it would be putting her through another GA for nothing really.anyway,I kinda feel like I've been hit round the head with a breeze block to be totally honest I feel a bit down about all this as he said he was sure she will never be very mentally aware! ..

last few days have passed in a bit of a blur,tried researching food/suppliments that might 'cure' her or stimulate brain growth, contacted Face to find they dont support my area,neither do Contact a family so that blew that one out of the water lol.Would just be nice to sit down and have a chat with someone who has a child like Seraphina.......theres always quetions you think of asking after youve seen the docs and some of them could probably be answered by a parent of a similar child.
This cold snap has really upset Seri,the spasms in her hands have been really bad...yesterday she couldnt move her arms at one point,they just 'locked' at the elbows and her legs went at the same time poor love screamed and screamed.I gave her baclofen and calpol but it took sooooooo long to work.There must be something better to use for there kind of emergencies,seems so cruel to just leave her.Should have asked Neurologist but you always think of these things afterwards and I dont know if I dare phone and leave a message for him :-s,not due to see him again till March.