Its been a bit of a strange day today. Shes had 3 clusters of seizures since 8pm last night, and this one that she had after waking from her nap this afternoon looks different to her usual patterns. Unfortunately still no positive changes with her seizures, BUT she is much less sensitive than she was two weeks ago, and theres a noticeable reduction in tears and irritability. So much so, that I am sometimes able to brush her hair without a meltdown. Her physio also noted today that she was a lot stronger and can see a big improvement than in recent weeks. We also received two lots of good news today - a grant we applied for recently has been approved. Well be receiving funding to build a patio on our deck area, and funding for a special needs swing. This will allow Amalie to have a suitable outdoor area to play in and also to do therapy outdoor. She will be sheltered from the elements and will also protect her vision (as it is very glarey in our back yard). We are very excited to be receiving help with this grant (which was only available to those with rare diseases). I also received a message from Amalies OT advising that funding has been approved for Amalies special needs stroller. We are thrilled about this as she will have proper supportive seating. Her pram was great, but no longer supports her and really isnt suitable. We opted for a stroller as opposed to a wheelchair, as I feel a wheelchair will leave her quite exposed and be a big change from her current pram - which is her safe place when we are out and she is stressed. Hopefully she will receive it by Christmas!
Posted on: Thu, 20 Nov 2014 08:28:48 +0000
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