Ewwww........yuck!

I am typing this post from my bed. I have a sore throat and my muscles ache....a lot!

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Holly helped me get Jack up this morning cos I was feeling so yuck. He slept through it all, lucky for some eh.

It was highly amusing having her help cos she kept getting in the way!  The funniest bit of all was her reaction to taking off his clothes because he was soaking wet having peed out the side of his nappy. Being the person I am, I made sure she was down at the business end taking off his pyjama bottoms and she was making "ewww" noises the whole time, picking them up by her fingertips once she'd gotten them off.  Even in my unwell state, I was bent double with laughter.  She was not impressed especially when I made her carry them and his bedding to the washing machine. Wicked eh?

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I used to be like her.  Bodily fluids were enough to turn my stomach but nowadays I have a perverse kind of fascination for them.  I am constantly monitoring Jack's bodily functions.  Making sure he has enough fluids, keeping on top of constipation and now the most fun thing of all, NOT, keeping his chest clear of gunk!

Over the course of last weekend, I spent quite a few hours while Kathy and the kids were here, trying to get Jack to cough up all the yucky stuff just sitting in his upper airways.  You can tell it's sitting there cos it makes a crackling, rattling sound when he breathes. Jack on the other hand is a tad mean with his offerings and prefers to not give them up without a major battle.  So when he finally coughs up some stuff, I am literally jumping up and down with excitement, much to the amusement of James (13), Kathy's eldest.

After watching me get all excited and praising Jack for his meagre offerings, James was looking at me as if I'd lost the plot (quite a normal reaction to me really) until I explained just how important it was to get rid of this stuff and how delighted I was that the gunk was white or clear as that meant no infection.  James thought about this a while then said "so really, you managing to get all this up is like the best thing ever, like finding gold, white gold" " and I laughed and said "you know what, I think you could be right!".

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So the gunk coming out of Jack's chest is now nicknamed White Gold and oh boy did I get lots of white gold over the weekend.  Clever clever boy.

Then last night, not only was my clever boy up on his knees quite a bit but he was also very vocal.  So vocal that Holly recorded it on her iphone!  He doesn't do this often but when he does, I join in so that we are turn taking, it's hilarious cos his face is usually a picture! He's probably thinking wtf?

We have had a home visit from the people at Rachel House, the hospice I told you about.  They came on Friday and then they phoned yesterday so we are booked in for a few days from Monday 11th April to Thurs 14th April and then again for 5 days in July.

I did break down over the weekend, in the arms of Kathy, not once but twice then we ended up laughing.  I know it is a positive step as we need this type of support but at the same time I was feeling kinda overwhelmed about it all.  I know I will feel better once I have been down there.  More than anything, I am looking forward to just being his mum for a few days without having to do the caring bit.

Now I am going to cuddle up in bed and die quietly or perhaps not, depending on how many times I can annoy Holly for a cup of tea.  She was sent home from school for being sick yesterday but she is much better today. I haven't the voice to yell so I will just stick my foot out the bed and bang on the ceiling til she comes running! Oh yeah, it's going to be a fun day!!! TTFN.

Ninja Erin strikes again

 I saw the poop coloured car again today!  I'm still laughing about it.  Little pleases little minds eh?

My weekend was pretty hectic.  Holly's boyfriend David, stayed from Fri to Sun and my friend Kathy and her kids, from Aberdeen, came to stay on Sat night.

Kathy's son James, was barely in the house and he was winding up Holly, yelling up the stairs to her and David to "not use up all the condoms."  Then he ran! I think that was a very wise move on his part.

On Saturday night, we strung up Jack's piñata and had great fun battering it into submission.  These things are a lot harder to break into than you'd think!  Jack was taking it all in and even had a bash himself.

James giving it some welly!

Erin, giving it a whack!  Camera is on shake for effect!

Holly's gonna kill it

Jack having a go

and again

at last the piñata is starting to give up its treasure

Once we managed to crack it open, lots of yummy sweets came tumbling out.  The kids piled them all up into the middle of the mat and Kathy and I shared them out between them.  There's nothing like sweets to silence kids is there?

After putting Jack to bed, around 10.30pm, we sent all the kids upstairs to sort out beds.  Holly has a den off of her bedroom, a really cool room, so it was decided that David and James would sleep in there and Holly and Erin would sleep in her room. There was quite a lot of giggling going on but finally they all crashed out.

Next day was a fairly lazy day.  Kathy got up with Jack and gave me a lie in but then the kids woke me up.....GRRRR!

Once again, little Ninja Erin was ensconced on the swirly chairs.  She was much sneakier about it this time, quietly slipping into the seat whenever someone moved from it. She had the best seat in the house as per usual and the remote control so she was as happy as a "pig in shit".  The day before, she had asked me not to call her 'magass' but I didn't have a clue what she was talking about.  Apparently this is the nickname her dad has given her after hearing about her reaction to the swirly chairs the last time she was here.  It stands for magnetic ass, cos her butt is drawn to the chairs!  Tee hee hee but I still prefer Ninja Erin.

On Sunday night, I decided it was time to wind her up a little cos, well, I had not had my fix yet.  So there she was, thoroughly ensconced on a swirly chair, like the cat that had gotten the cream when I mentioned that her butt had been super glued to that chair all day and that no one had gotten near it.  She sweetly said "no, that's not true.  I would give up my chair if someone wants it" to which I replied "off the seat then".

The wee monkey said "no!" I couldn't stop laughing but still insisted she get up and she curled deeper into the seat saying "no one wants it yet".  Flabbergasted, I spluttered "I do".  She had the grace to hang her head at this point, saying under her breath "I didn't really mean I'd give up my chair".  Kathy and I couldn't stop laughing cos it was just so so funny but we ousted her out the chair none the less and madam was so not impressed, screwing up her face, hands on hips, glaring at me.

I was only joking about giving up the seat!

NO! DON'T MAKE ME!

Not happy about being moved

is that supposed to be a scary face Erin??

Absolutely hilarious from where I was sitting, on the very comfy swirly chair! She is never going to live it down.

I apologise if I offend......

I saw something yesterday and I couldn't stop laughing!  It's probably not funny to you but it fair tickled me.

I was driving along to pick up Jack from school when I suddenly noticed the colour of the car in front of me.  I couldn't stop staring cos I thought I was seeing things but no, when it pulled in and I'd to drive past it, I wasn't imagining it.  The car was the colour of poop!  A lovely shade of dark brown.  I have never seen a car that colour before in the UK. A shit coloured car, wtf???

It was darker than this!   (source)

I giggled all the way to Jack's school at the thought of me driving a shit coloured car.  I apologise to those of you who own such a thing but this is a new one on me!  Is it just my mind?  Maybe the person who was driving it, saw the colour and thought of dark chocolate but all I saw was shit! Have I just become jaded over the years. Has 13 years of changing poopy nappies coloured (pardon the pun) my view and am I just looking through poopy (sorry couldn't resist) tinted glasses?

Then when I was driving Jack back to school, I passed a poop coloured mini!!! Two poopy cars in one day? Holy Shit!

Later, whilst driving Holly to her guitar lesson I was telling her about said cars and was hysterically laughing at how the dealers were describing this colour.  You know what I mean?  Like Racing Driver Red or Anaconda Green................Thick as Shit Brown!!! EEEEEWWWWWWWWWWW!

Holly was looking at me like I had lost the plot but hey she is used to my random ramblings. Then later, we were talking about her boyfriend and the lovely things he has said to her and I mimicked making myself sick, cos she is so besotted, as is he. I am so not a romantic!

Laughingly she said "aww mum, he's sweet, he says the nicest things to me and I didn't believe him at first but now, it's just lovely, it'll grow on you too" and quick as a flash I replied "mmmm, you mean like a fungus!".

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You should have seen her face!  I laughed so hard, the tears were falling down my face and I very nearly peed myself! She got a bit panicked cos let's face it, not being able to see for laughing and crying does not make for good driving!

What can I say, your own jokes are always the funniest aren't they?

Every picture tells a story

 Some of the crazy goings on in our house.

Holly and Shiloh, her best friend

It's a dog's life!

Even Loki gets the treatment

Diz and Holly....a pair of numpties!

no peace for those poor dogs

bored of annoying the dogs......... so lets make icing figues

Pingu??

Diz and her creation

Holly with her seal....how sweet.

no! don't eat it!

oops too late....yuck!

this is what happens when you do!

Diz's little family 

Ok enough  of the silly stuff, lets party. Diz and Holly glammed up

the boss.....moi......looking tired

Mum and Jack enjoying a cuddle

Hope you enjoyed the photos.  Have a lovely day folks.

Oh Joy!

I've had a pretty busy week. It's been emotional for a number of reasons, like the two birthdays I've previously posted about.  I can't believe I am now the mum of 2 teenagers!  Eeeek! I refuse to be that old!

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A lot has happened this week. I attended a meeting on Friday organised by Enable to discuss the governments changes to Disability Living Allowance here in the UK.  A local MP, Angus Robertson attended to answer questions and to try and explain the changes to people.

The allowance name will change to Personal Independence Payment (PIP) and there will now only be 2 levels: higher rate and lower rate, as opposed to 3.

Other changes are:- a medical test is now needed, you have to be ill for a year before you can claim, your wheelchair will be taken into account during the decision making process, your allowance will stop if you are in hospital or a care home for more than 28 days, you can only claim if you usually live in the UK.

My biggest worry is the 28 days in the hospital because Jack is no stranger to 6 week hospital stints and as I pointed out to this MP, the government then assume that the hospital is looking after Jack, when in fact it is me who is there constantly as they don't have the staff to sit with him 24/7. It is assumed by the government that local hospitals/care homes will then have funding for this kind of care should a person require it.  Well, I soon put him straight on that.

Then there is the problem of my car. I pay for it with the mobility part of Jack's DLA.  Are they gonna take it away after the 28 days?  What happens to it then and how will I get Jack to his appointments in Edinburgh and Aberdeen?  Take the bus? Then what is the criteria for getting it back and Jack's payments reinstated? Me thinks that David Cameron and his minions aren't really giving a shit either way because that will be the problem for local government, effectively passing the buck as is the governments want. Once again, David Cameron is punishing those in need, as if their lives are not hard enough.

I left that meeting feeling a bit frustrated and a little frightened if I am honest.  The future looks bleak for many of us and I am sick and tired of hearing about it!!!!

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I was only out of the meeting minutes when I got a text from Holly asking me to take her home early from the party she was at.  I was a bit surprised and asked why.  Turns out some of the kids there were taking the piss out of kids at their school who they were referring to as 'retards' or as one particular ignoramus stated "the correct word is mong!".  Just shows what a total idiot he was!  What pushed Holly over the edge was that one particular friend was laughing along with the others when she, who shall remain nameless, has spent quite a lot of time in our house and therefore should know better but alas no.  What cracks me up about this, is that this same girl, is so disapproving of Holly and her new boyfriend and was giving Holly a hard time about texting him just before this incident, really riling Holly but yet her disapproval didn't extend to people laughing at others who are different from themselves. She did finally say something when she caught the look on Holly's face but it was too late.

So Holly left and cried all the way home.  As she said, some days she lets it go over her head and other days she just can't.  Friday was one of those days.  To be fair to Holly, she left because she didn't want to be a party pooper as the girl who was having the party was oblivious to the goings on. She was only home 5 minutes when her pals, who do know better, rushed round and cheered her up.  Total stars.

These same pals, came round on Jack's birthday.  One, Daniel, gave Jack a home made card, in the shape of a bird and the other Jordan, bought Jack a bright yellow piñata and filled it with sweeties! I was quite emotional about it. People surprise me all the time and often in a good way, I'm glad to say.

the card from Daniel

Jordan's Pinata

Jack watching his ebirthday card from Joanna on my new laptop

Holly and I can't educate the world about disability but we can start by educating the people around us in our tiny part of the world.  I do think some of it is rubbing off.

Saturday night, my big sis, Kay and I drove to Montrose as we were going to a party.  My older sis, Julia lives not far from there and she was having a party for her husband Mark as he was 40. We had a brilliant night.  A rock band were playing and they were actually quite good although the lead singer did look like a Liam Gallagher wannabe!

The Southern Comforts were going down well, too well and I was starting to get a bit tipsy.  I was dragged up to dance by a young guy.  We were having a right laugh when a guy passed us carrying balloons and the young guy yanked one outta the guy's hand and presented it to me.  I laughingly took it and was quite chuffed at his gesture although, I would have preferred flowers ya know? lol I danced with him a couple of times and then went back to our table, where me and my balloon continued to boogie together much to the disgust of Kay, who hates balloons.

I was gaily waving my balloon around when Lauren, my niece came to speak to me.  Kay took this opportunity to stick her fork (left over from the stovies) into my balloon, popping it with a loud bang. Both Lauren and I jumped with fright, her drink jumped too and half the contents of her glass landed in my lap!  Both Lauren and I cracked up laughing and were helpless while Kay looked on bemusedly thinking "it wasn't that funny!!". Finally I managed to get breath and explained the situation to Kay who was even more gleeful cos she had gotten me a double whammy!  She killed my fecking balloon! WTF? Party pooper.

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Really really funny! Never a dull moment eh?

Happy Birthday Jack

Thirteen years ago today, Jack was born.  He is officially a teenager as of 10.22am .  I can't believe it, he has come so far.

Little did I know when I was carrying him, how much my world was going to change with his arrival. And boy did he take his time to arrive!  He was reluctant to come out even with lots of encouragement from the midwife. I had been in hospital for 4 days with nothing happening. The morning he was born I was due to be induced at 9am.  I was really not looking forward to it as I have a terror of needles and drips....eeek!  So I was sitting by the window, staring out into the sunshine, in a wee world of my own, trying not to panic about it when suddenly, out the corner of my eye, I saw a hand coming towards me out of nowhere.  I just about leapt my own height, screeched and was clutching my chest with fright.  It turned out to be nothing scary, just an auxiliary who had come over to see if I was ok.

As she was apologising profusely I was overcome with the most horrendous pain, had to be helped to my bed  and was having another one before I got there.  She gave me such a fright I'd gone into labour! That was at 8.30am and he was born less than 2 hours later.  She felt really bad but I was laughing and really grateful to her cos I had managed to avoid the dreaded needles.

The ex wanted to give him a really Scottish name like Angus or Hamish but I wasn't keen so we gave Holly the deciding vote.  She went with my name and I could have done a wee dance around the ward!  It had nothing to do with the fact that I had been telling her for weeks how much I liked that name (wink wink) and anyway, Jack is more often than not the name of the hero in stories, movies etc.  He was well named.

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In his 13 years Jack has endured two years of constant pain followed by brain surgery at the age of 3 and a half. He has been on a wheat and dairy free diet short term and has had so many tests, bloods taken, scans, x rays and he has been prodded and poked at by so many doctors that by the age of 5 he used to scream any time someone in white approached him. He has been hospitalised with seizures more times than I can now count and each time he comes out of hospital, he loses another skill and by the time he was 8, he was struggling to eat and drink.

He was always on the go, running, climbing, always wanting to be outside.  He never slept and was up most of the night.  I used to have to sleep in his room as he could get out of the bed and as he had no sense of danger he couldn't be left alone. I nicknamed him Houdini at that time cos you just couldn't keep him in!

He would have been able to get out of this!!!

His seizures were horrendous.  No two were the same and he had from 40 to a 100 a day to begin with.  When they were happening every two mins, seconds apart he was usually rushed to hospital.  We have been in every major hospital in Scotland.  Many times we were away from home for up to 6 weeks and I found this very hard as it meant leaving Holly behind but often I would just take her out of school as she was still young, homework in tow so that she didn't fall behind.

He has been on the Ketogenic Diet which is very similar to the Atkins diet where he ate loads of fat and very little protien and carbs. This was to help with the seizures.  I had to test his ketones twice a day to make sure that he was ketonic.  Everything had to be weighed and measured and he had to eat everything, down to the very last drop otherwise it didn't work.  This meant he had to eat 4 meals a day and I spent a hell of a lot of time cooking. He was on this diet for 9 months.  It didn't affect his seizures at all but it did make him a bit brighter.  He had a feeding tube fitted too, as a back up as he was struggling to eat at times.  They said it was temporary but it never came out again.

3 years ago

Five years ago, he spent half of March and April in hospital with seizures and again in May and June.  My mum died 2 weeks after he came out of the hospital in June.  She adored him. Shortly after that he stopped being able to walk.

Two years ago he had a Vagus Nerve Stimulator fitted.  A month later he had an x ray which showed that his swallowing had become unsafe and I actually saw the food going into his lungs.  I was devastated!  He loved his food, it was one of his few pleasures and now it was gone.

At the same time, his chest then became a problem.  The more seizures he has, the more saliva he produces, which he then swallows and half of it goes into his lungs causing infection.  A child like Jack, can die from a chest infection. He has been on so many medications over the years that I am sure he rattles at times.

Despite all of this, Jack has been a ray of sunshine in my life.  He is such a beautiful child, inside and out and everyone who knows him just adores him.  A smile from Jack can brighten the darkest day. He never gives up, always trying to get up again when another seizure or chest infection has floored him. He has such a determination that he astounds me at times and he never accepts his limitations. He can't speak but he says so much with his eyes and body language and he knows that he is so well loved that he has to fight off my kisses at times. Bad mum!  He is the bravest person I know and in my eyes he is my hero.

Birthday boy today

So Happy 13th Birthday Jackyboy.  I hope you've had a great day.

Here's looking at you

Today is my mum's birthday.  She would have been 68 today.

I miss her but I know that before she departed this world, she equipped me with all the tools that I needed to survive without her.

I know she was proud of me as she was of all 7 of us.  A lot has happened to me since she died and I truly believe that she is still looking down on me, watching and laughing.  In fact, I can probably guarantee that she has nearly fallen off of her big fluffy cloud, laughing hysterically at my latest antics and my reaction to them.

Yes, her very warped sense of humour was one of my legacies and I truly embrace it.  It's what keeps me going.

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So Happy Birthday Mum, wherever you are and I will be toasting you tonight with a very hefty dose of  Southern Comfort and Lemonade and a piece of chocolate cake, all the things you used to tell me were bad for me.  Yum yum. I can hear you tutt tutting already but luckily for me you aren't here to give me a telling off........nah nana nana nah! Tee hee hee

Just to clarify

My car is a wheelchair accessible car.  It is quite wide and has two passenger seats in the front and two in the back.  When I was choosing my car, I made sure that there was enough space for a carer and for Holly to bring a friend or two on days out.

My car is often full of teenagers, mostly boys, and it can get a little crowded at times.  When I have two passengers in the front, the passenger closest to me often has their knees pretty close to my gear stick so when I am changing gears, my hand nudges against them.

the front seat of my car

One particular teenage boy, A we'll call him, to save his embarrassment, liked to sit next to me in the front.  This used to cause a lot of hilarity among Holly and her mates.  They were sure that he had a bit of a 'crush' but I just thought he was pretty funny.

A couple of times while changing gear, I brushed against A's leg and he would shout loudly "Holly, your mum is feeling up my leg!".   This caused them all to fall about laughing as usual but it was starting to get a bit outta hand so I decided next time it happened, I would sort him out.

Sure enough a few days later, I had a car full of teenagers, with A, having pride of place in the seat next to me.  I was driving along, had to change gear and off he went telling his mates that I was once again "feeling up his leg!".

After the hilarity died down, I pulled into the side of the road and stopped the car.  I turned the music down and said to A " I think you are getting a bit confused here, so I will clarify it for you!".  I demonstrated changing gear and commented "this is what happens when I change gear. Right?" as I nudged his leg. He nodded, wondering what the hell I was on about and then I began to stroke his knee, saying "and this is what happens when I feel up your leg! You see the difference? So which one am I doing?"

A's face was bright red and he looked totally mortified but he finally muttered "changing gear".  I replied "that I didn't get that" so he said it louder!  Holly and her pals were in hysterics, and one of them blurted out  " ha ha A, you've just been owned by Holly's mum!!!!".

Suffice to say, he didn't do it again, in fact he wouldn't even sit next to me after that!!!  I'm bad!

A trip to the paediatrician

Yesterday,  Jack and I were at our local hospital as he had a paediatric appointment.  When I picked him up from school he was threatening a seizure but he waited til we arrived at the entrance to the hospital to take one.

I quickly dealt with it but he was quite sleepy after.  We didn't have long to wait before we were seen.  It wasn't our usual doctor as he retired but I did know this doctor so it wasn't too bad. He asked about the curve in Jack's back, asking did I think it had gotten worse.  It doesn't seem any worse to me but then he showed me the x rays from 2 years ago and I was quite shocked to be honest.

Jack's spine twists one way, straightens for a bit, then twists the other way.  Most unusual apparently but that didn't surprise me in the least as with Jack, nothing is ever straight forward. The doc then showed me a front view of the top half of his spine, taken about 6 months ago, when he had a chest infection and they were looking at his lungs.  It just looked just as horrible from the front.  He suggested that Jack get a x ray of his spine at our next appointment in 6 months time to just see if things are actually worse.

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He also referred us to another doc to discuss the results of Jack's HP test as it wasn't his particular area of speciality.  Jack is on meds for reflux but he doesn't really have a lot of it.  What he does have is reflux, brought on by a seizure and he then ends up swallowing half of what he brings up thereby aspirating it into his lungs. It's a constant battle to keep his lungs clear and not easy to do either as he fights me if I use the breathing mask.  Who needs to go to the gym when Jackyboy is around!  In fact, I do often wonder why I am not remotely thin!!!! 

I took the opportunity whilst there to show him the infection around Jack's peg site.  It's pretty red and raw and no amount of sudocrem is shifting it. Turns out it's a fungal infection so he wrote out a prescription for me.  While he was doing that, he was leaning on some hospital notes.  The physiotherapist, Liz, who was also there commented that "they were all Jack's notes".  I couldn't believe it cos there was a hell of a lot of them.  I said "I wish I could get a photo of that" and she replied "why not? You got your camera?".  "Yes, I do actually" I replied, causing her to laugh.  So I whisked it out and took this picture.

Jack's medical notes

The nurse even gave me a tape measure and his notes are 8 inches high!!!!!  Thirteen years worth. Nearly.

That would take some amount of reading don't you think? I was a bit blown away by the scale of them!

The doc made us laugh when he commented that "most women would tell you Jack, that 8 inches is good!" When it was time to go, the physio, Liz, gave me a big hug cos I had just mentioned that her referral for Jack to attend the hospice, had been accepted. She is such a lovely lady.

You don't normally gets hugs on the NHS!!!

Oops......

When Jack could still eat normal food, I used to have to give him his medication, which was in tablet form, wrapped in a piece of cooked ham or chicken.  This was the only way that he would eat it.  He was quite a funny wee guy back then.

One night, about 7 years ago, Marion, his carer was looking after him.  Normally Marion would feed him, bathe him, give him his medication and put him to bed in the time she was there.  This particular evening though, he was being picked up by Granny and Granda Mac to stay overnight with them as his dad was home.  I arrived in time to give him a kiss goodbye and Marion was acting a little bit weird. She looked a bit pale and wasn't her usual chatty self.

I didn't have time to think about it though as I was being licked to death by the labradoodle puppy we had at the time, while trying to usher everyone out the door.

Once Jack and grandparents were away, Marion blurted out "you'll never believe what's happened!"
She looked so so worried that I burst out laughing and said "it can't be that bad, surely?".   She was so upset so I sat her down so she could tell me.

Everything had been going fine with Jack, she'd made up his medication and left it sitting on the counter top while she showered Jack.  When she came back, it was gone!  She searched high and low but no, it was definitely gone and then she caught sight of the puppy, Rollo, sitting there wagging his tail and she knew by the look on said puppy's face that he'd ate it!  Trying not to panic, she quickly got another tablet for Jack, wrapped it in cold meat and made sure he ate it all.

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Then she went back to the midication box, pulled out the info on that particular medicine and quickly scanned the side effects and came to the conclusion that it would only make the puppy a bit listless and lethargic.  Whilst I am listening to this story I could feel the laughter bubbling up and I just cracked up laughing cos, really, the puppy was normally so full of beans so it wouldn't do him any harm to be a bit lethargic!  I reassured her that he would be all right and that it wasn't her fault, she wasn't to know that the puppy would jump up and steal it!!!

The next day, late afternoon, Marion text me to see how Rollo was and I text back saying that "so much for being listless and lethargic, he was so hyper, I could peel him off the ceiling!!!!!

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He was like that for two days! Practically bouncing off the walls and then he was fine.  Suffice to say, he got a lot of walks that weekend.  He might not have been tired, but I sure as hell was.

This happened one other time, this time on my watch.  You'd think once would have been enough eh?

Check me out!

My very clever but determined boy trying to stay upright not long after having a seizure.

still a bit groggy

starting to get more awake

I am even managing to keep hold of my Beastie!

bit tired though

might just have 40 winks

Jack has not been up on his knees for quite a few months.  I just wanted to share my awesome boy's major achievement with you all.