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.

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.

JUMP

I have to post this quick thank you to a wonderful local charity called Jump Children's Charity

I quote from their website,

"JUMP is a Registered Children's Charity that supports children with life threatening health conditions to capture special memories with their loved ones. We do this by providing a professional photography service to deliver photographs and film in a range of formats."

In the summer of this year they held a party in the park for families of children with disabilities and life threatening conditions. We went along to that event and had a great time. We also had a photo shoot (like you do), with a lovely photographer who captured lots of pictures of us all together as a family. 

Well, nearly all of us, for the most part Scarlett ran around trying to set off the fire hydrant. Still, it was a very memorable afternoon.

Recently I was asked to come and collect our photographs. Unexpectedly, what I received was a beautiful hardback book with all our pictures, entitled Zack's family. 

Granted the best pictures were of Zack. Especially the ones with the charity mascot. Not that he's part of our family or anything, we don't live with a giant orange cat. At least I think it was a cat. 

So thank you Jump Childres Charity, it is a gift that we will always treasure.

Thundercats got a bit too scary

Zack has a new seat. 

An R82 Panda and its fantastic.  He loves it, I love it, Scarlett loves it. A brilliant piece of equipment.

He can now sit again. He can go up to the table, all the way down to the floor. And it has it's very own table that attaches underneath the arm.

When we first got it I pushed it right down to the floor so Zack was at the same level as Scarlett. She stood in front of him grabbed both his hands and shook them in a little dance. They then spent the next ten minutes watching Thundercats together, with her resting her elbow on the arm of his chair.

Thundercats got a bit too scary so we turned it off. Quite violent those cat things.

Here's some pics of Zack in his new chair. (Note, we don't usually dress him up as a doctor in his chair.)

Thundercat time.

Okay, so it's not his chair but I've stuck it in just because. 

Who loves his bike?

Best therapy ever........

CBeebies Mash-up

I love watching the relationship between Zack and his sister develop. 

This afternoon Zack was lying on the settee and Scarlett was watching her usual CBeebies mash-up, I popped upstairs to collect something. When I came back downstairs I found her stood next to him running her fingers idly through his curls whilst continuing to watching television. All the while Zack lay there with a huge grin on his face.

In fact she only has to go over to him and his big beaming smile appears, complete with amazing dimples. 

Scarlett loves it when I make Zack stand up and pretend to chase after her. They are both in fits of giggles. And Zack loves it when we are all on the floor together playing with toys or reading a story.

I wondered how they might be able to understand one another or even develop a kinship if they can't communicate. In this short time I have seen that you don't need language to love each other, these two are quite happy just to be. Sometimes it's sad that he can't run and chase her, or even whack her over the head with a toy, you know like siblings do. But I have a sneaking feeling that even though he can't do all those things, Scarlett will gain a different understanding of the world, perhaps one that is more compassionate and patient. As for Zack, well he just gets to play big brother and has the bonus of knowing that there is someone else who loves him just as much as we do.

The girl in the wheelchair nodded

I did something stupid the other day. Well, not stupid.  I just didn't think. I made a presumption. 

We were in a car park when I noticed a Wheelchair Adapted Vehicle next to us. There was a lady in a wheelchair, must have been in her twenties. She had cerebral palsy. She was with another lady who was possibly a little older, possibly her relative or carer. 

I was curious about the vehicle and hung back to enquire about it. The able bodied lady was sorting out something in the front of the car so I smiled at the girl in the wheelchair, who smiled back at me. 

I waited until the able bodied lady came back to the rear of the car to ask her a question about the vehicle. She answered me and at the same time, said to the girl in the wheelchair "that's right isn't it?" To which the girl in the wheelchair nodded and said yes.

I did what most people do. I who have a child that has cerebral palsy decided that the person in the wheelchair wouldn't understand my question. How could I have been so presumptuous? But that's what we do, don't we? We are all guilty of creating stereotypes in our heads, or assuming certain things about someone. For a moment, I realised how easy it is to slip into that assumption. For the rest of the day I was kicking myself. 

It has made me think a lot about how, even though I live in this world of disability, I can be guilty of not offering the same understanding and courtesy that I would afford my son. 

I am still kicking myself now. But you can be sure I won't do that again.

Not much crying

What do you do on a cold, very wet Monday morning? Why, get up at 6am and take your son to Manchester Children's Hospital of course.

Zack went in to get fitted with grommets to fix his glue ear that has remained since birth.  Essentially a little cut is made into both ears and the grommet, a little tube, is inserted. All the fluid and wax is also drained. All done to hopefully improve hearing.

I was really impressed with how efficient the hospital was, we were in by 7.30am and Zack was all done and ready to come home by 1pm. 

I am also super impressed with how amazingly well Zack did. Not much crying and it hasn't seemed to have knocked him back at all. As for his hearing well, I can notice a change in his behaviour he is jumping a lot more if you talk too loudly and he is turning to people's voices. 

I know that after a few months the grommets may naturally fall out but for now I am happy that it is giving him the opportunity to hear how we hear.

Dressed up as large rodents

Did I mention that we have been on holiday?

Yes, we have been on holiday. It all seems like too long ago now but we spent a few nights in North Wales, near Porthmadog I think. Another caravan holiday, it was brilliant. 

We had a fantastic view of the sea and beach (don't know what bloody sea it was I am rubbish at geography). Scarlett thought she had her own little house complete with easily accessible bedrooms and toilet. Zack was very happy with the place.

We took them swimming which they loved. On the first night we went to view the local scene. By scene I mean people dressed up as large rodents pretending to DJ. Zack managed an hour before the loud noise, bright lights and crowds got too much for him. As for Scaz, well one night led to me having to take my 18 month old daughter disco dancing every evening. May as well enjoy it now, one day she will want me or her dad to pick her up from around the corner and keep a distance of at least fifty feet from her.

It all went too quickly. Next year we may try abroad....hahahahaha......hahahahaha......that is both excited and demented laugh. I must be mad.

Here's some holiday pictures.

Caravan living

Post swim session.

One of our many views

Beach ready

Portmeirion

Happiness is...

Is it disco yet?????

Still not managed to extract Zack's bike pictures. Still not giving up.

Stupid bloody woman

As I type this post I am waiting for photographs and film of the Pants on his new bike to download on to the mac. 

It is normally quietly and efficiently compliant tonight the stupid thing is having a hissy fit and taking it's time so this may turn into a post about something completely different and not at all related to bikes.

Yes. This is turning into a different post. 

Here read this.

Costa coffee kicks us out of disabled tot

In a way I am kind of glad that something like this has happened. Why? For weeks I have been listening and watching the build up to the Paralympics. Followed by the coverage of the sport. A lot was said about how it will help the nation become more accepting of disability, how it will only be positive for people with disabilities. Why it could even make us more tolerant, more inclusive. 

Yes. It was amazing to see such achievement. And it was great to see coverage of the Paralympics (even if it was Channel Four with ads). We could even feel a bit jublilant that disability got such positive coverage in the media.

And then this. Back to what we all know but never say. Some people are not that tolerant. We don't like different, we are unsure of not the same, it makes us uncomfortable. 

I am now used to the stares I get when I park my backside down in some coffee shop. {Which is now no longer Costa bloody Coffee......Starbucks will be jumping with glee.} No people aren't staring at me, but Zack, when I pop in his little feeding tube to his button in his stomach. I then happily push down some medicine and a bit of water. All the while enjoying my coffee and the general ambiance of said venue. 

Why I've even fed him his blended diet in a restaurant. You see, I used to give a rats ass what people thought. But then one day I saw a family in Debenhams, one severely disabled girl was being tube fed quite happily by her mother. She didn't give a rats ass and that day I thought why the hell should I be embarrassed about feeding my son. It isn't his fault that he can't swallow safely, it isn't his fault that he doesn't understand the complex movement needed to chew and swallow food. He needs food, he needs water. So he has a small tiny button in his tummy, it's no big thing that's how he eats and drinks. 

From that point on I didn't care where I was I just fed Zack. When people stare I stare back. But if that ever happened to me, if I was ever asked to leave a restaurant or coffee shop because of a complaint from a customer. Well....lets just say I might need to spend an evening in the cells. It's beyond shocking what happened, it's intolerant, it's unjustified and it just widens the gap between us and them.

What does that say to other parents in a similar position? Are we all to hide are children away because it makes someone else uncomfortable? Pathetic. So next time you are out and you ever see a child being tube fed, or having to use a suction machine, or whatever medical intervention it is they need to survive. Don't stare. Accept the differences that makes us special. Either that or you'll get a Tall Latte over your head. Stupid bloody woman.

And you, you tube feeding parents. Never be ashamed. 

And you, Mac. Start working. I'm still waiting on those pictures.