This has been a difficult week with loads of ups and downs. We were struggling at the weekend - how anyone comes to terms with this type of news I do not know. Lots of people have messaged and texted and rang. It is these friends and family who have helped to get us this far and I want to say thank you from the bottom of my heart. I know it sounds daft but just that message of hope or support or the call round for a cuppa helps to make this whole ordeal easier to deal with and makes it seem less scary.
Ava has had a difficult week. She has caught the chicken pox on top of a very bad cold and cough. We had to cancel her 2nd immunisations until she is better. Unfortunately she has been having stronger and more frequent seizures, especially today (Fri 4th March). I called our consultant and spoke to him about Avas condition and the fact that she is off her feeds. It is so reassuring knowing we have him by our side.If she remains off her feeds we may have to have a feeding tube fitted. Her medicine has increased to combat the seizures, fingers crossed it works.
Early in the week we had a specialist health visitor and our epilepsy nurse visit us. As a result we have been referred to portage, physio and a dietitian. It was such a relief to know that we don't have to do this on our own. On an even brighter note, we had reduced Avas meds a little and she was a lot more alert and focused on the nurse, laughing and giggling and concentrating on her face - a break through which we are hoping means its her meds not her brain making her unfocused. Even better, Ava has managed to smile, giggle, roll over and hold her hands together this week - despite her extra illnesses. I just think if she can do it so can we.
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