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Wednesday, 30 July 2014


Do you ever get the feeling you are getting left behind a little? Abandoned perhaps? 

I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless. 

When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened. 

I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May. 

Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.

Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?

You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?

I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.

Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house. 

Sincerely pissed off with the NHS. Sort. It. Out.

Monday, 14 July 2014

Nanny Barbara

I haven't blogged for a while because over a month ago tragedy struck. My mother, Zack's Nanny Barbara, died suddenly from a heart attack on the 5th June.

Such monumental news hit me side on the face and took my legs from under me. 

Zack was lucky to have known his nanny Barbara, she worshipped that little boy. She would come in to the house pick him up and just cuddle him, smothering him with kisses. I used to joke with her that if she looked after Zack constantly then he would get nothing done because all she would do was cuddle him.

As you can imagine the grief has been both shocking and devastating. I miss my mum. I miss phoning her to tell her about the small little achievements Zack has made or about the ridiculous appointment I've just been too.

In my heart I know she will always be with us and I always feel her nearby. I wish she was still with us but I take comfort knowing that Zack will have an Angel watching him. I'm sorry I cannot write any more, I just don't have the words.

In memory of my Mother, Nanny Barbara. We love you. We miss you.

Tuesday, 3 June 2014

Sulky chops

Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.


Yeah, huh?

We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......

Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.

What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.

On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.

And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.

Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.

It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point. 

Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.

Friday, 23 May 2014


The good news is we had the results back from Zack's latest EEG. His new stiff jerk movements are not seizures. Phew. We didn't think they were and thank goodness the hindsight was there to see what we were treating rather than dose him up with a cocktail of anti-epileptic drugs. 

His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.

The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord. 

Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.

Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household. 

He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then." 

Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.

Sunday, 18 May 2014

Elevated his illness

I wish I could type a more light hearted post, what with the weather being so fabulous and all. At the moment although it's a glorious day I feel as though we are still stuck in perpetual doom and gloom. In fact, I will go so far to say that the beginning of my 40's has not been a great start, maybe this decade of my life shall be known as depressed at 40.

Zack has elevated his illness to sickness and poo. We still have mucasgate which to be fair is causing the vomiting and we still have minimal sleep. This is week number three. I know what the problem is as we all now have colds and coughs. It's small child and her pre-school pals, they are just germ rats. Whereas we can usually shake a cold within a few days Zack's goes on and on and on. Only good news is that it isn't on his chest. 

At the moment this blog should have a warning. Don't read if you're in a good mood and abandon all hope ye who enters here. 

Tuesday, 13 May 2014

Mucas, sick and poo

I don't know what's powering me at the moment. Zack continues to wake up every night from about 1am. Either full of snot, or having a bout of his seizures. Either way it's all getting very boring and tiresome, so very, very tiresome. 

Last night he was furious, he woke up coughing and snotting and then seizuring, I think in the end he went to sleep, I know I did, I hope he did. He is currently fast asleep on my bed, he has been for over an hour and half. At least he is getting some rest, I know I'll pay for it later when he refuses to go to bed.

Today was a better day than yesterday. His bouts of "seizures" were less and the length of period in between longer. 

Apparently this morning there was an incident involving snot, mucas, sick and poo. I didn't have to deal with that, thank God. All I hear Dan saying was I didn't know someone so small could produce that amount of snot, it's amazing what the body is capable of distributing into your personal space.