The good news is we finally managed to speak to someone at the hospital about Zack's EEG results and it shows that he is not in non-convulsive status. For now we carry on with the regime of introducing his new medicine. The dose he is currently on is below the therapeutic window, we still have room to increase before he will be getting benefit from this new drug. Without tempting fate, he is doing well, and all looks promising.
In other good news I finally managed to get to the hairdressers and rid myself of an awful root affliction. Well, good news is good news.
Next year is a big year for Zack. He will start school. School. The very thought is terrifying and we still haven't made a firm decision about where to send him.
Whilst the decision making process is going on there is also lots of background activity happening with his statement of special educational needs. Reports have been requested from all manner of people involved with Zack including ourselves.
I have begun to write all about Zack and his educational needs but find myself saying lots of positive things that would lead you to believe he doesn't need help when in actual fact he needs lots of help. Help to access the world, help to understand his environment and a place that will see past his disabilities and understand his potential.
However for the purpose of the statement and in order to get the correct help I need to be blunt and very basic about his needs. I've put what I have written to one side for the moment in the vain hope that either a) some magic fairy will finish it or b)when I re-read it will actually be better than I first thought and not require too many amendments.
On top of school there is also plans a-foot at Casa Gould-Price. Planning permission has been granted for us to extend the house, providing a new kitchen area, oooooooohhhhh finally a new kitchen. Leaving the old kitchen as the new space for Zack's super crib and bathroom. Again. Thought of it fills me with dread. And again the thought of that is being pushed to the back of my mind until we are at the stage whereby we have past building regulations, chosen a builder and are about to start work.
No wonder I need my hair done I am sure I will start to see grey hair soon. Failing that my four inch root problem won't look out of place when I check in to a rehab centre having suffered a mini breakdown. Every cloud and all that.
Saturday, 29 December 2012
Wednesday, 26 December 2012
He has suffered
October 29. That was the date I last blogged. A lot has happened since then, hence no time to blog and to be honest I didn't want to blog. I spent so much time thinking about things, talking about things that I didn't even want to write about all that was going on.
But first. Ho. Ho. Ho. Merry Christmas. We, presently are having a lovely time. Which makes a change from the rather awful few weeks we have dragged ourselves through.
For the past couple of months we have been suffering awful bouts of illness, ranging from coughs, colds, viruses that cause you to vomit and blinding headaches. I have been so ill that twice I couldn't muster the energy to look after anyone except myself and usually I just find some extra energy to carry on.
Scarlett has had colds and the croup but managed to fight them all off. But Zack, poor Zack, he has suffered. He managed to catch several viruses one of which had him coughing none stop for 24 hours. Illness on it's own we can cope with but on top of all this his epilepsy decided to rear it's ugly head. Zack began to have small little twitches down his left arm, raising his eyebrows and pushing his head back at the same time. It got so bad that they relentlessly continued and would not stop. We took him to the local hospital where he had a two day stay. Pushing drugs into his veins, raising his current epilepsy drug to it's highest dose and eventually sending him home slightly better. In fact we had a week of going back to normal and then he got a bug again, high temp, vomiting, usual story. And again the same seizures appeared.
Fortunately we had an appointment with his neurologist and where sent to Alder Hey for an EEG to see if he was in non-convulsive status. So far we haven't heard back from the hospital and are hoping for some answers tomorrow.
Zack has started a new drug. Sodium Valporate, he's had it before when he was a baby. We are hoping that when he gets to the right dose that it will work. At the moment he is better but not how he used to be, he isn't having seizures all the time but he is having little batches throughout the day lasting about five minutes in length.
Despite all the rubbish that has happened to him, he still smiles and laughs every day. And he is having a most excellent Christmas. Got his own dark room, not for his photography hobby but for all his new light toys that Santa brought him.
I am hoping that 2013 will be much quieter for us and healthier. Either that or I am wrapping the house in cling film and never leaving. Ever.
But first. Ho. Ho. Ho. Merry Christmas. We, presently are having a lovely time. Which makes a change from the rather awful few weeks we have dragged ourselves through.
For the past couple of months we have been suffering awful bouts of illness, ranging from coughs, colds, viruses that cause you to vomit and blinding headaches. I have been so ill that twice I couldn't muster the energy to look after anyone except myself and usually I just find some extra energy to carry on.
Scarlett has had colds and the croup but managed to fight them all off. But Zack, poor Zack, he has suffered. He managed to catch several viruses one of which had him coughing none stop for 24 hours. Illness on it's own we can cope with but on top of all this his epilepsy decided to rear it's ugly head. Zack began to have small little twitches down his left arm, raising his eyebrows and pushing his head back at the same time. It got so bad that they relentlessly continued and would not stop. We took him to the local hospital where he had a two day stay. Pushing drugs into his veins, raising his current epilepsy drug to it's highest dose and eventually sending him home slightly better. In fact we had a week of going back to normal and then he got a bug again, high temp, vomiting, usual story. And again the same seizures appeared.
Fortunately we had an appointment with his neurologist and where sent to Alder Hey for an EEG to see if he was in non-convulsive status. So far we haven't heard back from the hospital and are hoping for some answers tomorrow.
Zack has started a new drug. Sodium Valporate, he's had it before when he was a baby. We are hoping that when he gets to the right dose that it will work. At the moment he is better but not how he used to be, he isn't having seizures all the time but he is having little batches throughout the day lasting about five minutes in length.
Despite all the rubbish that has happened to him, he still smiles and laughs every day. And he is having a most excellent Christmas. Got his own dark room, not for his photography hobby but for all his new light toys that Santa brought him.
I am hoping that 2013 will be much quieter for us and healthier. Either that or I am wrapping the house in cling film and never leaving. Ever.
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