Saturday, 21 January 2012

Uh Oh

This is one of the lovely phrases or noises (whichever you want to say it is) that my darling daughter uses.

Everytime she says it I think ah how cute you are :)

Oh S*** is another. But this one is not so cute especially if said in front of an adoring old lady in the same checkout who was just admiring your daughter.

The problem is we have tried a lot of different methods and keep perserving with these. We have tried ignoring it, replacing it completely with another word like 'chips' and making sounds like it but not the same word.

Nothing is working!

Ah the joys of being a parent.

On the negative side today we think that Cordy's epilepsy medicine is still not controlling her as we think we saw two very separate vacant episodes! How annoying. (head in hands)

Friday, 20 January 2012

From happy to crappy and back again

A visit to my sister's house so that Cordy can play with her cousin and enjoy a bit of running around. They are about 9 months apart in age, Cordy is older.

However due to Cordy's epilepsy her speech or lack of makes her seem like the younger of the pair. There are other differences too. Cordy does not understand what parts of her body are for ie where poo comes from whereas her cousin can point this out. Cordy also cannot speak except for single words which more often than not are out of context whereas her cousin babbles away and sometimes sounds like an older scolding sibling when things go wrong.

I know that as a parent i should not compare my child to anothers but it is soo hard. The problem is the older Cordy gets the more obvious the effect her epilepsy has had on her development.

My sister during a discussion about nurseries said that i should send Cordy to one for at least a year prior to her going to school. I disagree with this fundamentally due to Cordy's issues namely her hypermobility, behaviour and epilepsy. These all compound to make her more difficult than the average 2 and half year old. The problem is unless you see the after effects of a long session of play you cannot GET the effect it has on a child like Cordy.

For instance when we got home she went mental because she was so tired and i imagine achy(as she was running around) It took over an hour for her to calm down long enough to go to sleep, can you imagine a nursery having the time to deal with her?!

Don't get me wrong, once she has had her sleep she is better but she still slaps, bites, pulls hair and generally gets in the way like a normal toddler but also not like a normal toddler if that makes sense. She is the light of my life but she also needs a lot of help to get to the developmental milestones that other toddlers find much easier.

Now to finish her tea!

Thursday, 19 January 2012

what time is it????

So it's 1:23pm and it feels sooooo much later. I am so shattered!

I have been up since 5:30am when darling daughter decided that it was time to wake up and scream. The she did not want to go back to sleep despite my best efforts. Her power nap at 11:30am did nothing to make me feel better as i would love a power nap but for some reason i just cannot sleep like that.

I have a class tonight, revision to do, notes to write up for a friend and the energy of a slug!!!!!

Tuesday, 17 January 2012

Come dine with PERFECTION!

What is it with some of the people on Come dine with me. I was watching with darling daughter when this 21 year old girl came on and was like 'i have been to posh places and I know what good food tastes like ' blah blah blah !

I wanted to scream HELLO YOU ARE 21!!! Its time to act your age and not like some old fart like the rest of us!

It did not appear that she came from an affulent (spelt wrong) background but she described her host's food as something you would get from your bog standard restaurant. I would love to know what her definition is of bog standard as for us mere mortals that is all that we can afford. If i wanted to eat at Jaime Oliver's restaurant everytime i went out i would not be able to eat for the rest of the week.

I must add though that i think that this idea of perfection is something that runs along some people's minds all the time. I refer to a lady whom is now married to a mutual acquaintance. She said that her and her partner never argued, never disagreed and pretty much said that their relationship was perfection on toast. I rebutted that i disagree and have tiffs with my husband as i thought that was the natural part of life. You live with them 24/7 they are bound to get on your nerves and vice versa!

Well as it was her partner proposed to her a year later. Ah perfection!! But my husband told me that her partner had let it slip during a drinking session that this was after months of hearing her singing at him Beyonce Put a ring on it song!!

So the moral of my long moan is whilst i am the mother of a beautiful little girl and things seem ok most of the time, when poo gets under your fingernails and on your floor without you realising it you most certaintly know that you would prefer not to be so perfect, life would be so dreadfully boring!!

Monday, 16 January 2012

Its your turn ffs

The words of the day were exactly this. It was my husbands turn to get up and deal with our daughter and guess what - he said it was mine! I could have killed him. After a very short but very vocal argument I got up much to my husbands pleasure as he wrapped the warm covers back over his head.

So ..... I ripped the whole duvet off the bed! Oh how satisfying that felt!!!
Ok so have not posted in a long time. Life gets so busy and i forgot my password!!

Cordy still has seizures! The doctors have still not figured out why and keep upping her meds instead which is not great but at least they are doing something about it.

Since i last wrote we also found out that our daughter has hypermobility pretty much running down the length of her body and this has complicated issues more as this requires a lot more assistance from our trusty old NHS, God Bless it!!!!

Cordy has an appointment for some medical professional pretty much every week from now until the end of February regarding both issues and every opportunity I have I thank the fact that we live in a country that has this free health care as otherwise we would be up to our eyes in dept.

Anyway gotta go - Cordy has decided to hover by bashing the head of the hover down repeatedly

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.