We have got so used to interruptions and delays in our family due to careing for Sarah and hospital visits, but this delay in writing an update on the blog is actually as we've been busy with lots of lovely things!
Sarah is such a different wee girl these days, full of conversation , interaction, role play, physical activity and singing.
Her appetite and ability to sit with us at the table and feed herself is great, no excess drooling and poor coordination.
In school she is learning and retaining information. Her recall is so much better. We get regular updates of her day at school but what's also lovely is she is so keen to hear all about our day e.g. "so Dad how was your day at Blythswood"
Her walking is so much steadier and her co ordination is improved. She has gained confidence in her physical activities outdoor play swimming and even horse riding!
What about all those seizures so have they gone?
Well they are not all gone and in fact Sarah continues to have regular seizure activity through the night, if she has some early morning ones they do leave her groggy first thing and at times wobbly.
Well they are not all gone and in fact Sarah continues to have regular seizure activity through the night, if she has some early morning ones they do leave her groggy first thing and at times wobbly.
As this was not the case for the first two months on Phenytoin we discussed it at her recent visit to the Neurologist. She has suggested to shift the dose so that Sarah receives more of her medicine at night so we hope this will cut out some night seizures and also help with her sleeping. She has been poor at falling asleep.
Interrupted nights are hard but we hope we can get stability back. Sarah is aware now of the seizures as she feels the effects and talks about it.
Our medical team continue to support the referral to the London Center for Epilepsy for a full assessment on Sarah but as yet our Highland Trust has not given approval. Please pray we will receive this, as we so desire to have it and to learn from such an expert team dealing with complicated cases such as our darling Sarah.
Many Thanks
