Saturday 29 December 2012

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.

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.



Monday 29 October 2012

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. 

Monday 8 October 2012

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.

Wednesday 26 September 2012

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.




Monday 17 September 2012

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.







Wednesday 12 September 2012

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.

Friday 31 August 2012

Applause, very good old people

I have blog guilt. 

Not posted for a while, but I have been busy. It's hard work trying to entertain two small creatures. I have discovered that Play Doh holds the key. Well for the smallest one anyway. 

Zack loves squishing it and Scarlett, she likes to sniff it, walk round with the pot, sniff that, then attempt to eat some of it. 

Pants has been a bit poorly. He developed some high temperature, vomiting, upset stomach bug. The doctor gave us some antibiotics just to be safe. Safe of what? Probably to ensure that if he did have anything chesty it didn't get worse or develop into anything nasty. No idea what it was but it seems to have disappeared as quickly as it arrived. 

He's been in a lovely mood these past few days. Very smiley, very happy, very responsive. We even left him with Nanny/Grandad Price. And Nanny Price did all of his afternoon food on her own, medicines too. She was extremely pleased with herself. We have to give some credit to Grandad Price as he mixed up Zack's food in the blender. Ahem. Stand up, applause, very good old people, proud of you. I can say that, I know they read this. Hahahaha.

Zack's trike has arrived. My, oh, my it's fantastic and he loves it. But I am not going to say too much now, I am going to film him on it for his blog. So watch this space.

We are off on our hols next week, North Wales, not too far but far enough for it to be a change of scene and a break for all of us. Excited. Yes. 

Final update, Zack went to see eye lady. Usually he reserves all of his ability to see for home this makes me look like a deranged liar when I tell people what he can and can't do.  However today, what a brilliant little man. She actually saw him, watch, follow, smile at and laugh, yes laugh at the toys. She was really delighted with his progress. She still thinks he is a cheeky boy....I've said that all along. But that just makes me love him all the more. 

Tuesday 7 August 2012

Six long weeks

It's the summer holidays. The "Summer Holiday" season has always eluded me, I didn't really get why people would go on about it. I get it now. 

Six weeks of having both children to look after, for six long weeks. I think I got used to having three mornings with just one child when Zack went to nursery. I understand why summer could be so difficult, thought it would be nice to have six weeks of nothing. It also completely throws your routine out of the window. 

On the plus side some nice things have happened. Dan is off for a week which means days out all together, and days to ourselves. 

This weekend we had Scarlett christened. We were really pleased to have it at the same church with the same Curate that Baptised Zack. It was a lovely day and Zack was brilliant. Scarlett was, as usual, fabulous. Here are some pictures for those of you who haven't already seen them on Facebook.

Looking fine and dandy


Don't think she rates his outfit.

Nanny




We have also been making use of the fantastic Warrington Sensory Play Centre in Woolston. It's a soft play area especially designed for children with Special Needs. During the holidays they have been running a session on a Monday for a couple of hours called Dolphins (no idea why we have that name but no matter). It's for children with complex needs. As well as the usual soft play things they also have a sensory room, an area for use with ultra violet light, a quieter dark area with two projectors.  It really is a brilliant facility for the Warrington area. 

Scarlett loved it. But the Pants, he thought it was brilliant. They have a very large soft play slide. I let Zack go down on his own. He shut his eyes the whole way down then laughed his head off at the bottom. This called for a lot of slide activity....any excuse to play really. 



Sunday 1 July 2012

The Trolley Buddy

Going the supermarket is quite easy with an able-bodied child. 


Get out of the car, get a trolley, stick kid in trolley. Go shopping. Get kid out of trolley. All done.


Not so easy with a child that has cerebral palsy. They don't sit very well in the trolley. They tend to fall forward, or to the side or even fall out of the trolley. Nope, you can't just pop off to the supermarket. 


Then, I spotted something developed by a fabulous charity called Cerebra 


I have mentioned them before. They helped us out with a grant so that we could pay for private Speech Therapy for Zack. I swear if I win the lottery they will be getting a huge sum of money. 


They have a development section within their charity that design products to help children with disabilities access things in life that most mainstream kids take for granted.


A parent had asked them to design something for their child so that they may use a supermarket trolley. They did. They came up with the Trolley Buddy. It is so simple. A little portable seat that you take with you to the supermarket. You just pop it into the trolley, strap it round the back, pop the child in, strap them up and taaaadaaaaaaaaa. Child goes supermarket shopping. 


I phoned them to see if I could buy one. They sent me one free of charge to trial. Have I told you how much I love this charity. They have a waiting list for them and are looking for a commercial partner so that they may produce them. So Tesco, Sainsburys, Morrisons, Waitrose, come on buy the Trolley Buddy. Have them to hand behind your counter. Help us mums and dads out. We just want to take our children shopping.


Here's Zack testing his out. 


In me Trolley Buddy

Slightly Leaning in this isn't just any supermarket trolley


He loved his shopping visit. He had a smile on his face all throughout the store. Only hitch was at the end. Zack's tone is quite tight, his legs got stuck trying to get him out of the trolley.  He needed two people, one to lift him and one to try and get his leg to bend. He couldn't stop laughing. His poor legs are all bruised but he found it highly amusing. Might need to re-look at that. The other hitch was he needs just a little bit of side padding to stop him leaning. However a slight prod now and then and he was back in the centre enjoying the ride. The next test will be sitting next to his sister in a double trolley. Think she'll like the company though. 


Thanks Cerebra. You are brilliant.

Sunday 24 June 2012

Does this make me his carer?

Last week was Carers Week. A national campaign aimed at highlighting the many millions of carers in the UK.


This is taken from their website www.carersweek.org 


" There are almost six million carers in the UK 1


 People providing high levels of care are twice as likely to be permanently sick or disabled 2
 Every year 2 million people take on new caring responsibilities 3
1.25 million people care for more than 50 hours a week 1

One in eight adults in the UK is a carer 1
3. 3 million people juggle work with caring responsibilities for a disabled, ill or frail relative or friend 1
The main carers’ benefit – Carers Allowance - is £55.55 for a minimum of 35 hours, equivalent to £1.59 per hour
58% of carers are women, 42% are men 1
1.5 million carers are over the age of 60 1
Carers’ unpaid contribution is £119 billion each year, yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer 4
1 Census 2001

2 In Poor Health, Carers UK 2004
3In The Know, Carers UK 2006
4 Carers UK / Leeds University 2011


I am classed as Zack's carer. I hate that term. When asked who is his main carer I say myself. But I don't view myself as his carer, I'm his mum. I am supposed to look after him, who else is going to do it?


This got me thinking, how many other mothers or father's view themselves as carers? Do we see what we do as something that we should get paid to do? Do we think about the amount of money we are saving the government?   


I don't want this to be a pity post.  I suppose I wanted to blog about it because the issues highlighted by the Carers Week campaign are things I never consider. Perhaps I even feel a little embarrassed about it all, I mean why should I receive monetary help just for being a mum?


Yet if you look on the flip-side. My son is three years old and still requires the care of a newborn child. It will most likely always be that way. This doesn't make me sad. It doesn't fill me with a sense of tiresome dread. To me it's just the way things are and will be. In a strange way caring and loving Zack has given me happiness that I don't think many people will ever truly experience. 

I have the added help of his Father. A secondary carer, who receives no monetary help. He continues to work full-time as well as par-take in his share of looking after Zack. I bet if you asked him does he see himself as a carer the answer would be, no I'm his dad, this is what I am meant to do.


I have no idea how other carers feel. There are many different types, those that care for elderly relatives, those that care for their spouse. And most concerning of all children who care for their own parents. And with each caring relationship comes a variation in stress, hours and free time. 


Whilst trying to write this post I have been in and out of young man's bedroom trying to get him to sleep. And he is still wide awake shouting about it at 10.15pm. No doubt when he finally does drop off he will be up again in the night. Perhaps something many parents deal with, perhaps not, perhaps he doesn't fully understand bedtime routines, perhaps he does and is just being a little git. Does this make me his carer?


During the week I take Zack to hospital appointments, we see therapists of all kinds, I discuss adaptions to our house, I try to figure out which of the two schools available to us offer the best option for a child with special needs. Does this make me his carer?


I undertake countless hours of therapy with Zack. I am his physiotherapist, his occupational therapist, his speech therapist, his sensory therapist. Does this make me his carer?


I feed him all his food and his water. I give him his medicines at the correct time. I monitor how many seizures he has in a day. I research products and equipment that could help him in his daily life. Does this make me his carer?


I know every minute detail of that boy. I know the meaning of every small tiny movement. I know what he needs and what he is trying to say without him uttering one word to me. 


All of this would in the eyes of some make me his carer. But all of that to me just makes me his mum. He's my boy what else am I supposed to do.



Thursday 17 May 2012

The break did us all good

We've been on holiday. Oh I do beg your pardon, we've been on a mini break. To the Lake District.


Found a lovely little self catering place to stay, which was so cosy, comfortable and clean that I could quite happily live there forever. Well, okay not forever, but definitely for more than a week or two. Liked it so much I am going to give it a little plug. Here's the link.


Ivythwaite Cottages, Windermere




Zack had a ball as we all did. He has been so happy and in such a good mood. The break did us all good. 


We've been on boats, in aquariums, visited animal parks. 


Here's the pics. Enjoy.

The Windermere

The Animal Park




Got myself a set of wheels from the gift shop




Afternoon tea for three

Zacky and Travel Teddy

On us boats

Fishes

Otters bum
Fishes....again.

Thursday 10 May 2012

Thank you soft play Mummy

Someone posted this on Facebook.


9 Ways You Can Help A Special Needs Parent


Some of it I like.


For example No. 1, No. 3 and No.8 and No.9.


Especially No. 8.


See My Child. I think Maria has eloquently put what I see too. My son. 


It's true for some people disability equals uncomfortable conversation, awkwardness, not knowing what to say, and so better to ignore than to engage. Sometimes people don't see the child, they see the disability first. They don't see the person. 


However I do understand the other side to this statement. As parents of children with special needs we can't stand and berate our friends or strangers because they may feel awkward. Before our lives change, I wasn't 100% comfortable with disability, I didn't understand. But I do now. And it's up to Zack and everyone who cares for him to allow others that distance, to allow others to ask questions and to educate those who may never experience what an absolute honour it is to care and love someone as brilliant as the Pants.


Everything is relative to the individual. It doesn't matter if you worry that your child may have a cold, it doesn't matter if you worry that your child isn't sitting yet, it's important to you and your world. And no it does not upset me to hear you share your stories of your children. 


Recently we took Scarlett and Zack to a soft play area. You know, one of those squishy, sticky, padded cells. Basically somewhere Scarlett can fall over and Zack can slide, roll and drown in a sea of coloured balls.


A young couple came along with their baby girl, a couple of months younger than Scarlett, we got to chatting as you do, usual thing, ages, milestones blah blah. I told her about Zack and just said he had Cerebral Palsy. Stock answer usually. It would take me an hour to explain all his added extras. 


When I say to someone he has Cerebral Palsy you usually get the ohhhhh polite nod and then silence. I usually change the conversation to ease their awkwardness rather than us stand their smiling at each other.


Not this time. This stranger, this lovely girl, asked me lots of questions about him. Asked why it happened. Asked if he liked his nursery. Asked if I still worked. Her other half was also interested. We spent the next half hour talking about Zack. Towards the end of the conversation she apologised for asking so many questions. 


Sorry? Sorry? No you carry on, I love talking about him. I don't mind at all, it was so refreshing. 


That young mummy was going back to college to train to become a nurse. I think she will be a very, very good nurse. Thank you soft play Mummy for taking the time to talk to me about my son. 

Wednesday 2 May 2012

Battle, bureaucracy and bollocks

Where have we been? It's been a while since I last posted and to tell you the truth I haven't had much spare time.


Most of my time has been taken up on the battlefield. Just one ridiculous fight after another.


On the plus side Zack has wangled an extra day at nursery, he now attends three mornings a week. He's not very happy about it. I am.  He also has a new looker-afterer, he's not very happy about that either. As his dad said, he has to get used to different people. I suppose he needs to just shut up and put up then. 


Met with the ENT doctor about Zack's glue ear. Really wished I hadn't met with the ENT doctor about Zack's glue ear. I swear I am talking a different language in there as he doesn't seem to hear me. Pun not intended. I was asking for gromits for Zack, he said they wouldn't make a difference as his hearing is the same even with hearing aids in...do you remember this discussion from about a year ago? I kind of get what he means but at the same time, how helpful is it to have glue ear, surely leaving it for three years isn't healthy. 


We also discussed Zack's snorting at night. Again, took me about ten minutes to get him to understand. We are having a sleep study at some point to see what's happening. He recommended nasal decongestants, which by the way I have since found out you can't buy over the counter as he suggested, oh and nor can my GP prescribe them, so ball back in his court. Do you see why I haven't time to blog. 


Adaption is back to feasibility stage. At least I managed to get grants lady round to look at the house and make useful suggestions. She was very helpful and is returning with her boss due to the complicated nature of the house/job. 


At this point, all of the above can go and shove itself up it's own backside. I have had enough of all the battle, bureaucracy and bollocks. Sometimes I think people that are involved in lives such as mine need to experience the reality of it all. Things need to be simple. Easy. Co-operative. 


Ha. Wake up. When will that ever be the case. 

I want to alleviate the fear of death

The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the o...