24/4/09

Above pic of an apprehensive Seraphina in her new standing frame...shes not sure about it!

Well we had the multidisciplinary meeting..lots of people couldnt make it as it was in the Easter holidays but the physio,OT,Com nurse health visitor were there.DFG was discussed a lot (Disabled fasclity Grant) the general consensus of opinion by people other than the OT was that Seraphina needs a downstairs bathroom and bedroom however the OT needs more 'proof'.She is going to assess her again at the bewgining of July and if she is stll the same then she will look into applying for one for her....of course now Seraphina has started to take a few steps on her own so potentially that could be used as a reason to stall for a bit longer! who knows.

My personal feeling is that it would make SOO much difference to her quality of life...beng able to have a bath safely would be a big one.It so hard carrying her now as she is a big girl with lots of uncontrolled movement.my back hurts more often than not now and it would be nice to have way of moving her safely.plus she would have her own bedroom instead of the living room.At the moment we are waiting for her bed to be delivered and so have thrown our front room furniture away to make space for it.I dont know whether her local Paed would be able to put some pressure on Ot to let her have a DFG...dont really know her well enough yet to feel Ican ask.

The real shocker this month has been Little Lydias MRI results...apparently she has a growth on her spinal cord.She is being referred to Neurosurgery in Birmingham Childrens Hospital for this but as yet an appointment hasnt come through.To say I was devastated is an understatement...but we will get through this as a family like we always do.Cant help wishing for a break though.This morning I waved her off on a trip with the school to Kingswood activity centre where she will be absailing/caving/quadbiking etc etc she was so excited lol! Im going to miss her so much...what a soppy Mum I am.

We finally were able to order Seri's car seat 'yay!' so hopefully we should have that in 2-4 weeks.That will be a great help as it has a turntable on the base so we can get her in and out of the car more easily.

Seraphina is into Peppa pig big style at the moment..its funny to hear her laugh when Peppa comes on...will have to look into finding some Peppa toys I think :) the other character she seems to like is Dora the Explorer:) I guess its the bright colours.

well I'm off to get a cuppa :o)

Where are we now....

Once again its been quite a while since I have updated this blog,maybe I should just reconcile myself to the fact that it will get updated but ont always regularly :o).
Quite a lot has happened again...She got a diagnosis of cortical Visual impairment and is apparently borderline for being registered blind.She had a hearing test and has got to go back for a further test as they think she has an Auditory nerve impairment too.
We started doing Biomechanical rehabilitation work with her...patterning and so forth which we believe is helping her.She also now has suppliments of probiotics,fish oils and blueberry extract from a company called Biocare which we hope will help her brain development.

We went up to Sheffield to have her sleep study repeated but it was abandoned at 2am because of noise from Sheffield Uni students disco grrr...so we have to go back again soon to try again with that one.

She had seemed to make some progress trying to say a word 'flower' but then as usual her brain wiped it and she no longer does that which is sad.
We had a long appt with her new Neuro paed Consultant...who incidentally is absolutely lovely..........and she thinks that the damage to her brain is quite widespread and she could well have processing problems which would mean that things were 'wiped' from her brain.she was asking a lot about the other children (trying to build up a family tree) and her comment when seeing what other problems the children have is'Im quite interested in your family tree now I've seen it...........its quite impressive how unlucky you have been,in that people usually GET a break!' (no kidding.....and we have a medicine cupboard the size of Wales to go with it!)


We also asked her honestly about what her prognosis is likely to be,particularly what her life will be like/whether she will be able to look after herself when we are no longer around ..........the answer was not really what we wanted to hear although she put it in the nicest possible way.Her mental progress is slipping further and further behind and she is showing 'autistic traits'....she 'doesnt need' us,avoids eye contact,is no at all demonstrative,doesnt like being touched ...the list goes on.The Consultant feels that she will always be 'quite slow at best' and will 'always need quite a lot of support with life'.Its so difficult as sometimes I get excited that shes doing something,that shes trying to 'connect' with me only for it to be wiped and once again I lose my little girl and she stares blankly into space.
On a positive note a lovely lady from my antenatal club Hazel,who ha a very talented mum ( already made Seri a lovely taggie a while back) is maing Seri a blanket for her new bed with her name and taggies along the top :o).I am so so pleased and Seri will love it.Hoping her bed wont be too long in coming now.
We have also managed to get funding for Seraphinas new car seat!,they asked what we could contribute and then came back to us offering the lot as they said we had so much to deal with,so so pleased that we dont have to worry about trying to find the nearly £900 to pay for it,special needs equipment is SO expensive..this should last till shes about 11 though so will be well used.

On Thursday this week we have Seraphinas first multidisciplinary meeting,Im dreading it to be honest as so many proffessionals in one room is my idea of hell and I know I will find it quite intimidating.On the other hand only by doing this will we get a united 'way forward' for Seri.
Well Im going to leave it here as I am so tired recently..