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)
3 comments:
Ooh, a fellow Peppa fan! We all love her in this house!!
I so hope you get what you need for Seri. Keep pushing! Never underestimate what a bit of cheek and front can get you ;)
Love and hugs to you, my friend. xxx
hi, i just wanted to say what a wonderful mother you are to seri........ i have spent all morning reading your blog and although it is heartbreaking and makes me realise how cruel and unjust life can be at times it is also inspiring and uplifting as the love for your little girl feels almost tangible to me as a reader. she is so lucky to have a mommy like you.
stay strong.
kindest thoughts and prayers are with you and your family......
Hi, I have just read your blog after catching up on Babyworld, I did wonder how you are getting on. You are an amazing mum to your children and I so hope that you get the permission you need for Seri to have her own room etc.,
Thinking of you all.
Liz xxx
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