Thursday, 18 February 2010

And how are you doing???

This is the question that I find I am asked all the time by health professionals since Cordy started having seizures.

I find this the most difficult question in the world! I'm not normally an emotional person but neither am I stone cold when it comes to a soppy movie or saying I love you.

The first time I was asked this Cordy was hooked up to a monitor and had a needle in her foot. It took all the strength I had to say "I'm fine just dealing."

The reason I find it difficult to answer this question is that while everything is fine, everything is also not fine. I find that when Cordy isn't having seizures I still watch her like a hawk. I interpret every movement as the potential seizure about to come on. Yesterday for instance I left her alone for a minute and when I came back into the room she was rigid and her eyes were fixed on a point in front of her (something she does when she is having a seizure). My baby however was not having a seizure but staring rather intently at her toes!!! Oh that scared the hell out of me!

A couple of hours later I was holding her and she started making some noises which again reminded me of when she was about to have a seizure but when I looked at her face she was fine.

When I spoke with my mum about it she said that I have to stop worrying and while she agreed that its easier said than done I understood her point. The problem is I guess I'm waiting for the next seizure, the next time we end up in hospital with Cordy.

I remember being asked this question by a nurse when we visited the hospital a month ago as Cordy was having cluster seizures. She put her hand on my shoulder and asked how I was doing. It took all my energy not to break down.

I know this question is a kind gesture on the part of the person who asks but its such a loaded question when your baby is having seizures or seems to be doing better because lets face it at the end of the day this is an ongoing medical condition. Even if Cordy does well on her new medicine and is seizure free she will still be on it everyday until she is 2 years old.

I guess like a lot of parents I just have to hope and pray that Cordy will get better and that this time in her life will be left behind one day.

Wednesday, 17 February 2010

today's a diversion

So today is the first day that Cordy is staying with someone other than me or my husband. Its only for 2 hours but already I'm saying to myself I will only let her stay at my mum's for an hour as I think that is best for her (really its for myself).

Cordy hasn't had a fit in just over 3 weeks but she is suffering with a cold and last time she had a cold she ended up in hospital for 6 days and was only released at 4:30pm on Christmas eve. So I am very hesitant to say the least. The other thing stopping me is that my mum is a bit panicky and I'm not sure she will keep her cool should Cordy have a seizure.

Before the seizures started I would not have hesitated to leave her with someone but everything is different now. There is medication to consider and because some of the seizures that Cordy has are vacant it means that unless you are paying attention you miss them. This also means that if she has more than 2 within 30 minutes she should be having intervention/rescue medicine.
So I'm trying to keep cool and think nothing will go wrong but this also means that I don't feel comfortable enough to actually let my hair down and go and have lunch with my husband. So instead my husband and I are going to stay at home and so do some diy. We live 5 mins from my mum so I think this is best.

Urg its so hard sometimes!!!!

Tuesday, 16 February 2010


Ahh its just past 8 in the morning and my Cordy wakes us up with a cough. A bottle and some porridge later and she is happy, I myself need a coffee before I feel like a human! 8:30am and its medicine time. She takes her Carbamazepine most days but today she is spitting some out and I hear my husband telling her she is naughty.
We are off to the cinema today and so far its a good day. We have had just over 3 weeks of good days and its starting to feel like the past few months were happening to someone else...

You see Cordy started having seizures in early November. I remember it very clearly because I was at home with her, she was just over 4 months old at this point. I was just about to change her bum when she made a wimpering sound and had a full on grand mal or tonic clonic seizure. This meant that her whole body was shaking and her face dropped. She was completely unresponsive. I remember being so in shock that the only thing I managed to do (besides watching her like a hawk to make sure she was breathing) was call my husband. I was screaming at him to come home as she was having a seizure. When he did manage to get here I was so out of it that he asked whether we should take Cordy to the doctors instead of the hospital and I actually contemplated it!!! After a minute or so we decided that she needed the hospital and so I packed a couple of things and rushed to the car with them both. It was only in the car that Cordy then had another seizure. Another grand mal one. I was beside myself at this point and my husband drove to the hospital.

To be continued....