Tuesday 19 August 2014

An update.

Yesterday we found out Anna has a sort of form of epilepsy. Her vacant episodes are in fact seizures, as we expected. According to the EEG, they last for around 30 seconds at a time. As the paediatrician  only received the report during our appointment yesterday morning, anti convulsion medication wasn't prescribed, however I am expecting a phone call this morning with details of the prescription she will be put on to control this. As she gets older, the dosage will be increased in order to  minimise the severity of her seizures. I've been watching Anna like a hawk, for some reason since getting this diagnosis I'm expecting her to start having full blown seizures. Apparently her choking episodes may also be attributed to this. 

The good news is Anna doesn't have a metabolic condition. We are relieved to hear this,. The test on her newborn heel prick shows that's CMV was present at birth, so we're now 99% sure that this is the cause of her brain damage. What I'm struggling to understand is why CMV isn't routinely tested for in newborns. If this had been picked up earlier, I wouldn't have had to go through the struggle of getting somebody to listen to me and take me seriously when I suspected something was wrong to begin with. Anna would have had a diagnosis sooner, and measures could have been put in place to ensure Anna was getting the support she required right from the get go. However as this isn't the case, I have to try and let it go and concentrate on the fantastic support we've received since diagnosis. 

Anna is still happy as ever. Like any baby her age, she has started teething. Her lumpy bumpy gums are causing her some discomfort, but after a quick cuddle she's back to her usual smiley self. She's laughing more and more, usually at Leo comically hitting himself for her entertainment, my kids are nuts! I wish I could say the same for myself. I am not coping well. I'm exhausted. I'm not sleeping well at all. I'm waking at several intervals through the night to check that she's still breathing, not choking, hasn't had a seizure. Why is it that all the evil thoughts like to creep into your head when it is time for rest?  I know I've got an amazing support network around me, but I feel so lonely. It's so hard seeing people babies develop normally (not that I'd ever wish this on any parent!) and knowing my baby will probably never do these things. And I feel so selfish for feeling like this. I should just be grateful that she's here and happy. She's happy, and it's her that's going through it all! I have no place moaning about how tough I've got it when Anna has a lifetime of difficulty and prejudice facing her.  I know there's nothing I could have done to stop this, but I still feel partly responsible. My one job was to grow her safely, protect her, nourish her with goodness until she was ready to enter this world, and I didn't do it. I know logically that it's not my fault, but it's hard not to play the blame game when you're faced with such unexplainable situations. 

I feel terrible for Leo too. He doesn't understand the severity of the situation. And to top it off, Anna has an operation on her ears on his birthday. It's the only date they have available. He feels left out as it is, so for the dates to collide in the way they have is awful. I just hope as he gets older he realises we don't love him any less, he is just as loved and cherished as Anna is. All I can do is try and make it up to him by throwing him the best birthday party possible. 

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