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Thursday, May 17, 2012

8 Months!!

Well another month has gone by, and how fast it's gone! This means Isabelle is now an incredible 8 months old! I seriously don't know where the time is going! I've found myself already planning her first birthday party, which seems insane. It doesn't seem two minutes since i was planning her birth! As each day goes by we continue to fall more and more in love with her. We've had a tough couple of weeks, the events have been heartbreaking at times, yet somehow they seem to have made us love our little girl even more.
A few weeks ago we began to notice that Isabelle had started nodding her head. At first we couldn't tell whether it was just a new thing she'd learnt to do, but after a while it became obvious that the head nodding was involuntary. It got more and more powerful to the point where she'd fall over, or bang her head on things, and she began to do it more and more. She always seemed to do it when looking at lights.
It gradually got more often and more powerful, and we noticed that her eyes were going funny when she did it too. I managed to get some video footage of her doing it, so i booked her in to see a doctor.
The doctor took one look at the video and was quite concerned, she mentioned Epilepsy, which had been the first worry I'd had. She said she was going to send an urgent referral letter to the hospital to get her tested.
A couple of weeks later i received a voicemail message on a Saturday morning from a doctor at the hospital asking if we could take Isabelle straight in. We spent a couple of hours at the hospital with her being looked at and examined. The doctor was worried about several things. She said she wanted to arrange an EEG, MRI scan and blood tests.

Something was brought to our attention which we had never heard of before. 'Angelman Syndrome'. Almost all of the worries that the doctor had mentioned, were symptoms of this syndrome. We all did the worst thing possible and got on google. Apparently, children with Angelman Syndrome rarely walk, and hardly ever speak. We were devastated. The more we read, the more we convinced ourselves it could be bad news.
It was so hard to think that this beautiful little girl who is so amazingly happy and perfect to us could have such a disability.
We had a couple of terribly restless nights and spoke about it loads. We'd just taken the fact we thought we had a completely 'normal' little girl for granted. We'd always assumed we'd take her to Ballet lessons, and singing lessons like me. The thought that she may never be able to do those things broke our hearts. As i thought about it more and more, i suppose i almost diagnosed her in my head. She ticked so many of the boxes! I couldn't bare it, but i sort of managed to get my head around the thought she could end up in a wheelchair, but the thought of her never speaking was unbearable. I couldn't even think about how it would feel to know she's never say ' I love you mummy'.
One characteristic of Angelman Syndrome is that they are amazingly happy children. Always smiling. The amount of appointments for speech therapy, physiotherapy etc they go through each week is unbelievable, yet they never fail to keep a smile on their faces. They are truly inspirational people!

Angelman Syndrome is diagnosed with an EEG, and a blood test. On Tuesday morning we got a phone call from the hospital, saying that Isabelle had been referred to the main city hospital for an EEG. We had to wait for the other hospital to call and tell us when to go in. It was a nail biting few hours. Eventually, they called, and told us to go in that afternoon. The EEG was an awful experience, it took approximately an hour and a half, and i have never seen my little girl so distressed. It broke my heart. Even my mum shed a tear, and she always manages to stay strong.
We then had a long wait, before returning to the hospital the following Monday.
To our delight, the EEG came back as normal! We have never been so relieved! It felt like we'd been given our little girl back!
They still want to do the MRI scans and blood tests, so we're waiting for those appointments to come through, but at least we can sleep at night now!
Of course, we would love Isabelle no matter what, but its such a relief to know she will be able to have the sort of life we've dreamed she would have.
This experience has certainly made me a lot more grateful. I will never take her for granted, every little thing she does now amazes me.
She is now 8 months old. She doesn't roll over and she has no interest in crawling. In the opinion of some medical 'know it all's' this may mean she's behind with her development.
I don't care what age she walks, crawls, skips or sprints. She gives the best smiles in the world, and that's enough for me.
She sits up completely on her own now, and she has two teeth!!! She's learnt how to say Dada (Which has pleased Adam no end) and she's saying it all the time!
She's certainly not going to be under any pressure from us, to reach certain milestones at certain times. This is the one time in her life she wont be pressured with deadlines and rules, and i have no intention of changing that.

I love my BabyBelle more than life, and i always will. She's my absolute world. I have the most amazing, happy, brave and beautiful eight month old baby girl in the world, and i couldnt be more proud! 
xxxxxxxxxx