He will start school

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.

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.

He seemed quite impressed with Zack's Moose socks

We are still in coldsville....otherwise known as man flu house. Both Dan and Zack have a cold, I seem to be immune to it. I feel like I am in one of those disaster films where everyone has a virus and I am the only human survivor that has an immunity to it......oh no...hang on, sorry, nope, I am thinking I am in that film I was watching the other day, I Am Legend.

Anyway, back to the Pants. Yes he still has his cold. Just when I thought he was getting better he decides to have a day of coughing and being in a bad mood. A real, I've got a cold and I feel so sorry for myself mood. I am hoping it will have cleared by the end of the week, if not it's off to the GP with him like any normal over-anxious new mum.

We met with the neurologist from Alder Hey the other week about Zack's epilepsy. He seemed quite impressed with Zack's Moose socks, I think the man has an appreciation of 'fun' socks, his were striped ones ala Rainbow.

It was rather a quick meeting but the bottom line is we are increasing his sodium valproate medicine over the next few weeks and then Zack will have another EEG done. The consultant explained that Zack's brainwaves are a little chaotic. To put it simply instead of just thinking normally it's all a bit fuzzy, Dan likened it to interference on the television, like when you get a snowy picture. Not that you would get that nowadays, what with all this newfangled digital malarkey, he means like back in the olden days when you had an ariel on top of the t.v. or if very poor, a wire coat-hanger and you would have to move it around until you got a clear picture or have someone stand by the tv for an ultra fine high definition version.

Anyway back to Zack. The medicine hopes to make the picture a little clearer for Zack so that any activity that takes place in his grey matter will be able to do so more smoothly. When he has a seizure it's simply a burst of energy within his brain. This hypsarrhythmia that Zack has causes the seizures which could also be delaying his development, so the idea is the more control we get over it, the more his development may progress. (That's the theory but it's not for certain that this happens we just have to wait and see.)

Over the past couple of days Zack has introduced a new seizure into his repertoire. I don't like it. He raises his arms up and moves them over to the right, his head turns to the left and his eyes go really wide as though he is in shock. This lasts for a few seconds then he comes back to the land of the living and starts to cry. It's the crying I don't like, this one obviously distresses him. I am hoping the medicine will put a stop to them but for now I am keeping an eye on them. If these start increasing I shall contact the epilepsy nurse for some advice.

Sometimes I think if I sat down and really thought about all the problems Zack has and the awful outcomes that could be I think I would drive myself crazy. There are some parents having been through a similar experience that say the first two years are the most difficult. I suppose they could be right. Everything is unknown for us and the outcome could be not so good or much better than we had hoped. I have to remind myself to keep living in the moment and not get so obsessed with the future that way I can enjoy my time with Zack rather than sit there worrying about his prognosis. And I do love spending my time with Zack.

UPDATE

2nd October 2009

My immunity is shattered. I have been infiltrated by the germinator. I have the bad cold. Zack got taken to the doctors and has been given antibiotics for a chest infection. I never new babies could cough and snot so much goo, these are not pleasant times, especially when the Pants coughs sick into your hair. Nope, not good, not good at all. Get me tea, toast and magazines I need to recuperate.

He has been started on medication called Sodium Valproate

It's Zack's big op day tomorrow. He is oblivious to it all. Meanwhile I can't stop thinking about it. I have even written a list of what to take with us, I mean how hard is it to remember a change of clothes and his food!!

We went to see Zack's consultant on Monday afternoon. I had a call from his secretary asking us to come in at 2pm. I met Dan at the hospital, he looked extremely worried. I asked him why he was so petrified, he looked like we were taking one of the cats to be put to sleep. He said he was terrified that the Doctor was going to tell us something awful about Zack, sometimes Dan gets himself wound up with too much thinking.

Zack's seizures are atypical, meaning he doesn't have West Syndrome, he is suffering with a form of epilepsy. If we don't get it under control it will get worse. He has been started on medication called Sodium Valproate. There is a list of side effects as long as your arm, but that is the case with a lot of medication. I think the main one is hair thinning, well in Zack's case, not much of a problem there. 

We are to start on a small dose and increase it gradually over time. From looking into things, this may or may not work in getting his seizures under control. We will just have to wait and see. We have been asked if we can try and keep a diary of how many episodes he is having in a day. Great, this means Dan will become even more obsessed with counting the activity of the Pants. 

Over the past day or so we have noticed an increase in the number of times the seizures are occurring, they are now happening in bursts of four or five, inter-spaced with 40 second intervals. So far today he has had 21, not good, but I am hoping the medicine will begin to work in a few weeks. Zack is also a little bit less alert than usual, again I am hoping this will subside and his alertness will increase. 

Things are very tough at the moment, there is a lot going on and a lot for us all to deal with. I said to Dan the only way I can explain how I feel is that we are at the foot of a very big mountain and I haven't even got halfway up. I'm still at the bottom stood on a little ledge. I hope one day we'll be able to stand at the top and look at the sunrise.

If only we could just get a break or a glimmer of hope it would lift us a little. Hope is a very difficult concept to hang on to when you are faced with a daily serving of difficulties. It doesn't help when one of us gets down about things, we only really have each other for support. As nobody truly understands what our life is like we lean heavily on each other. 

I think this week is just a difficult week and I am sure there will be many more to come. Hopefully next week will be better, I just pray every night that Zack makes some improvement, he deserves all the help he can get.