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. 

Its a girl!

On this day last year, we discovered we were expecting a little girl. I cried tears of joy when we found out. I couldn't believe how lucky we were to have one of each. After the absolute shambles that was our anomaly scan we booked a private scan, I was so thankful to have a decent photograph of our baby to share with people. And the bonus was she was a girl! I wanted a little girl so desperately, a little lady to buy pretty dresses for and play dolls with (yes, I am one of THOSE mums!). I imagined a bossy little madam charging around the house, making us play mummys and daddys, making up dance routines, writing and performing terrible songs that we'd think were fantastic regardless. I imagined her teenage years, the endless arguments we'd have over the amount of make up she deemed necessary, whether high heeled school shoes were suitable or not. I laughed as I remembered my teenage years and thought "great stuff, I have all that to come!". I imagined her blossoming into a young woman, helping her with her university application, shopping trips, relationship advice, weddings, babies. I vowed that my daughter and I would have a relationship very much like the one I have with my mum. My mum is my best friend, she knows absolutely everything there is to know about me, I do not know what I would do without her. I prayed that Anna would feel that way about me. I am slowly coming to terms with the fact that in all likeliness, these things won't happen. It breaks my heart that my little girl won't grow up to do the things she was supposed to do. We'll rewrite our future of course, only time will tell how much she will be able to do. And it will still be filled with happiness and love. Just in a different way to how we imagined. And as my mum so beautifully put it, she'll be our very own little Peter Pan, the girl who doesn't grow up. 

Anna had her sweat test for cystic fibrosis 2 weeks ago. We've heard nothing yet, I'm hoping no news means good news. Yesterday we received copies of the referral letters to the ophthalmologist and the neurologist. On one of these letters, we have the correct term for her brain malformation - polymicrogyria. In addition to this, there are cysts present. We have the appointment with the neurologist in just over a week, so hopefully we'll learn a little more then. Physiotherapy seems to be going okay, Anna's upper body strength does seem to be improving slightly. I've had to rearrange the audiology review due to personal circumstances, but she appears to be hearing more these days too. Its a busy week again this week appointment wise. I probably won't post again until after we've seen the neurologist. I just wanted to say thank you all again for all of the support and love thats been sent our way, its times like these you realised how lovely people are.