Huh?
Yes, huh? That was the combined effort of conversation that Dan and I could muster as we left the doctors office having been told Zack's EEG results.
If it were a cartoon, we would have large glowing question marks above our heads, over-emphasising our complete inability to understand what was being explained
You see, the EEG results, for once, are positive. The little twitching episodes that we thought were seizures turn out to be not seizures at all. Okay he has the usual abnormal brain patterns, but hey, who doesn't when they've suffered a massive brain injury. But there is no suggestion that what he has been continuously doing for a couple of months is epilepsy.
Hurrah.
Huh?
So what is it then? Well it could be some form of dystonic movement, whereby the body jerks as a result of abnormal brain activity.....see above. Or it could be to do with his reflux. Oh?
Agreement all round was to up his reflux meds and see how he goes. Keep him on his two epilepsy meds for now whilst he is stable and see what happens.
He hasn't done it for a while now. In fact, he hardly has any seizures. I mean the odd pattern of a few if he wakes up in the early hours but nothing worrying.
Our plan now is to get him back down to one medication for his epilepsy. But I still can't figure if what we were treating him for in hospital was seizure activity or something else.
Again.
I say huh?
Thursday, 31 January 2013
Tuesday, 8 January 2013
A proper grown up boy
Think I've finished the statement information request from the LEA. Think I am happy with it. But still can't bring myself to think of him going to school.
All day. He will be gone all day. I feel like September is hurtling toward us and I am trying my best to ignore it. I am worried about so many things, mainly that I can trust the people that are there to teach the children. To trust that alongside receiving an education he will also be looked after properly.
In saying that, a strange feeling occurred the other day. I went to collect Zack from nursery on Monday. It was his first day back since the Christmas holidays. Oh, sorry, Zack's extended Christmas holiday. I kept him off for the last two weeks to give him time to recover after his battering of general virus nast. Anyway, I go in to collect him and he is sat with his coat on in his chair waiting with the other children and teachers. Usually I walk in and he ignores me, this time he sees me and a big grin appears on his face. Scarlett runs over shouting Zack and strokes his hair and I realise at that moment my little baby boy is now becoming a proper grown up boy.
He just looked older, like a reception class child. It's hard to describe but these past couple of days he has become more like himself again. Responding to lots of things in the house, wanting to join in, being good in his car seat (usually unheard of) and playing with his ipad. Yes. Definite arm lift to touch the screen, I even noticed the extra concentration on his face when he quite clearly lifted his arm to touch the screen in order to get the song to play again.
In a way this shift in who he is gives me comfort. I know he will cope with school and I know he will do well. It's just, will I?
All day. He will be gone all day. I feel like September is hurtling toward us and I am trying my best to ignore it. I am worried about so many things, mainly that I can trust the people that are there to teach the children. To trust that alongside receiving an education he will also be looked after properly.
In saying that, a strange feeling occurred the other day. I went to collect Zack from nursery on Monday. It was his first day back since the Christmas holidays. Oh, sorry, Zack's extended Christmas holiday. I kept him off for the last two weeks to give him time to recover after his battering of general virus nast. Anyway, I go in to collect him and he is sat with his coat on in his chair waiting with the other children and teachers. Usually I walk in and he ignores me, this time he sees me and a big grin appears on his face. Scarlett runs over shouting Zack and strokes his hair and I realise at that moment my little baby boy is now becoming a proper grown up boy.
He just looked older, like a reception class child. It's hard to describe but these past couple of days he has become more like himself again. Responding to lots of things in the house, wanting to join in, being good in his car seat (usually unheard of) and playing with his ipad. Yes. Definite arm lift to touch the screen, I even noticed the extra concentration on his face when he quite clearly lifted his arm to touch the screen in order to get the song to play again.
In a way this shift in who he is gives me comfort. I know he will cope with school and I know he will do well. It's just, will I?
Monday, 7 January 2013
Christmas Photos
Thought I wold share some Christmas pictures. Seems ages ago now.
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| Kiss for her brother |
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| No idea what the joke was |
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| Obviously very funny |
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| Xmas party with F.UN |
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| Loving the Christmas tree lights |
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| Watching The Snowman for the first time. |
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| I got a light up truck. |
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I know I dressed him up as a giant dinosaur, he loved it |
Tuesday, 1 January 2013
No resolutions
Happy New Year everyone.
Social networking sites are full to the brim with messages of good tidings for friends and family. Alongside many resolutions that probably won't make it through to the end of January (how pessimistic of me. No, realistic).
What of us? What of our hopes for the New Year? 2013. 13. That is a fortunate number in my life. Zack was born (perhaps saved) from the brink on the 13th. Scarlett was born at 13.13 on the 1st of the third. I am, therefore, rather hoping that this will be a fortuitous year.
I am making no resolutions (see above reasons) but wish for an abundance of good health, good luck and bravery. We hope that this years see's our first holiday abroad. I'll come back to that further down the line, but if we don't go and try then we will never know if we can manage it complete with Zack's medical needs and feeding regime.
Oh and last one. I shall go to the gym. Not a resolution, just a statement. Perhaps a mantra that I will keep repeating as I stuff another piece of galaxy chocolate into my mouth.
Whatever you decide, good luck to you, I hope it sticks.
Social networking sites are full to the brim with messages of good tidings for friends and family. Alongside many resolutions that probably won't make it through to the end of January (how pessimistic of me. No, realistic).
What of us? What of our hopes for the New Year? 2013. 13. That is a fortunate number in my life. Zack was born (perhaps saved) from the brink on the 13th. Scarlett was born at 13.13 on the 1st of the third. I am, therefore, rather hoping that this will be a fortuitous year.
I am making no resolutions (see above reasons) but wish for an abundance of good health, good luck and bravery. We hope that this years see's our first holiday abroad. I'll come back to that further down the line, but if we don't go and try then we will never know if we can manage it complete with Zack's medical needs and feeding regime.
Oh and last one. I shall go to the gym. Not a resolution, just a statement. Perhaps a mantra that I will keep repeating as I stuff another piece of galaxy chocolate into my mouth.
Whatever you decide, good luck to you, I hope it sticks.
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