Beware of the thief in the night

I am sitting here next to Ava who is lay by my side sleeping. I watch her breathing intently. I spent what felt like an eternity this evening watching her as she had a massive seizure. The clock stopped, time stood still and my heart started to race. Panic was setting in but why? I deal with over 30 seizures a day with Ava but this one was different. This one was like all the seizures at once tenfold. Ava was in distress which made the seizure worse. I tried to calm her whilst my body was screaming inside. For the first time in 6 months Ava was given rescue meds to stop this hideous seizure. It took a few minutes to bring her out but it worked. She was still, her eyes staring at me in relief. Her breathing quickened and I had to take hold of myself to prevent another panic. Midazolam is her rescue med and can cause respiratory problems, hence the panic and why I sit looking at my daughter at 11.30 at night, 3 hrs after the seizure and meds were given. Most likely I will still be in this position for hours to come, constantly looking out for the thief in the night who could one day take my baby girl from me. The thief had been forgotten for a short while but his presence sharply felt again this evening. The pain of this knowledge is indescribable, the awareness acute, the tears now sting. Beware the thief, we call him epilepsy.

Proudest moments

Its been awhile since our return to the UK. In that time we have had ketogenic diet clinic, EEGs, Audiology, Dr's appointments, New Conductive Education Therapy at Percy Hedley, 15hrs of school a week, nursery half a day if we can, Outreach therapy and Centre based therapy with Heel and Toe 2 hrs a week, Dentist appointments and fitting in Ava's USA therapy home programme when we can.

Ava's progress continues to amaze me. In Conductive Education today we saw more of the "good" reflexes emerging. In sitting Ava voluntarily put out her hand to keep her balance :) She held onto the table to keep her balance :) She sits and brings her hands together (a small change with a massive consequence for her development). In prone she happily lifts her head as high as she can (which is high). I saw her in her class the other day and have thought I am making too big a deal of these small changes but let me tell you they really aren't a big deal, they are MASSIVE. I know you shouldn't compare but the children in her class are over a year older and until you see her with them, you just don't realise how far she has come. Thank you Christine, Isabella and Surprise, Surprise we really wouldn't have come this far without you. Ava's therapists in the USA are fantastic and keep in touch with us regularly. I wish they could see Ava now because she is even further forward than before.
We will keep pushing for more small changes that mean a lot to Ava. I know she still has a million miles to go but she has come thousands already. Very proud of her and when she brings those hands together mid line - I can't begin to describe how proud I am of her.