Wednesday, 25 April 2012

A show, a birthday and alcohol....what more could I want?

This post was going to be all about a friend's wedding but I am having trouble uploading all the pics so that post will have to be for another day.

Tomorrow Jack is supposed to be going into hospital in Edinburgh for an operation on Friday. Tonight he has been coughing a lot and has a wee bit of a temperature. I hope to god something is not brewing cos I have been nursing his jejunoscopy tube along for months now and it started to fall apart on Monday night.

The tubes only last about 6 months therefore it needs replacing and I truly don't want to put it off so he needs this operation for a fundoplication done, sooner rather than later, so that we can get back to gastrostomy feeding again.

Hopefully he will be a brighter boy tomorrow and we can go ahead as planned.

This week has been pretty hectic as Holly was in the show Joseph and his Technicolour Dreamcoat. I took Jack to see it on Wednesday night, along with Holly's boyfriend David and Jack's carer, Marion.

The show was amazing! I just don't know how they managed to get all those kids on stage at once without any major mishaps. Holly was one of the narrators in the show so was only off stage twice so it was a bit full on and by the last show, she was exhausted.

She did manage to stay up til after midnight on Saturday night so that we could all toast her on her 18th birthday.

Kathy getting ready to toast

James (party animal)  with his champers

Erin (swirly chair ninja) enjoying her tipple

Jacqui reluctantly getting her photo taken 

Emma and Mark the Newlyweds
Holly and David before they tasted the Champagne

and after!!!!

Yes as you can see both Holly and David do not like the taste of alcohol! The reason the last photo is so fuzzy is cos I was laughing so much at the faces they were making that the camera shook.

Monday, 23 April 2012

Tea boy of the week

When I was at the Chas at Home ladies night last month they told us about their Tea Boy of the Week.

Apparently this idea came about because, well, we all know how boring it is watching a kettle boil don't we? So they came up with the idea of having a handsome man to look at while they waited.

We all had to come up with names of handsome men to add to the list which was a real conversation starter and a really good laugh. I was telling them about this musician I had seen on the TV that morning but I couldn't remember his first name but I could remember his last name. So the next thing we were looking him up on the net and when his picture popped up on screen I had all the ladies who were hovering, gasping! One lady told me that I had very good taste, which made me laugh!

Anyway, this is him......

David Garrett - violinist

I would listen and watch him play all night hot hot!

It was decided that the Chas workers Sue and Yvonne would share their Tea Boy of the Week with us mums who were happy to leave their email address. Anyway, the first weeks copy of Tea Boy of the Week consisted of Tom Hardy (Holly's favourite actor) with a little pic of David Garrett just for me off to the side.

So I stuck it on the wall behind my kettle....

So that I could admire and ogle at every opportunity! Then Holly's boyfriend came to stay for a few days over the holidays and he made me endless cups of tea during that time so I had my very own, real life version of a Tea Boy.

I asked him to let me take his pic for my blog but he was a bit shy at first but then my charm wore him down!

So here he is my little gigglers, the best Tea Boy ever!!!

Tee hee hee. Me thinks Holly is a lucky girl.

Sunday, 8 April 2012

It's all broken

I think I need to write a book about my life!

The problem is that some of the things that happen to me, are at times, so unbelievable that I am sure people will think it is fiction.

If recent events are anything to go by; I was struggling to believe it so how can anyone else?

All of you who read this blog will know a little about the past traumatic few months that we, as a family, have endured.

I was quietly starting to breathe properly for the first time in as many months as things were starting to go well.

Wednesday started off as a fairly typical day in the Mckenzie household. The kids were having a lie in as it's the Easter holidays. I was taking a bit of time to get going as I was fighting off the dreaded lurgy and was feeling a bit sorry for myself but came to after copious amounts of gargling with paracetamol! (A cure Granny Mac treated me to regularly when Jack was very ill and I was constantly coming down with sore throats).

When I got Jack out of bed, he was quite sleepy for the first half of the morning and then as the afternoon progressed he got a little more active. He hadn't had any seizures that day so far so things were looking bright.

Mid afternoon found him rolling around on the floor, getting into all sorts of mischief much to Holly and I's amusement.

He kept rolling towards a large pine cabinet in the living room and I kept moving him away from it as he often bashes his arms or legs against it, incurring many bruises. In fact, since he has come home and been so active, I have talked about moving this cabinet out of the living room into the dining room but with being so busy, I just never got around to it.

I had just moved Jack away from the cabinet for the 2nd time and was sitting chatting to Holly when she yelled "Jack's legs are caught under the unit!" I looked over to see that the lower half of his legs were trapped under the unit, with his knees bent inwards. He was trying to sit up and twist his body in the opposite direction from the way his legs were.

I knew he didn't have room to turn his legs, so I sprinted across the room, which wasn't far believe me, shouting "no Jack!" but as I reached him I heard a loud POPPING sound and I knew that it was too late, that he'd broken a bone. His reaction confirmed it as he was breathless with pain and his face was contorted in agony. I looked over at Holly who had her hands over her ears in shock!

I was hysterical, sobbing, trying to console both him and Holly who leapt into action, getting dressed (we were having a pyjama day!) whilst I got Jack, who by this time was whimpering, into his sling ready to hoist him into his wheelchair.

It took Holly and I just minutes to get him into his chair, a few more minutes to get him into the car and we were at the hospital within 10 minutes.

The shock was starting to set in and I lurched from sobbing hysterically to being ever so calm. Once at A & E we waited about 15 mins before we were seen. It was another hour before he got any pain relief because they tried to give him paracetamol but he is on that regularly so couldn't be given another dose. It didn't matter anyway cos they had drawn it up in the wrong syringe and it didn't fit his jejunostomy tube. She got another medicine in a different type of syringe but again it didn't fit, so poor Jack ended up with an injection into his stomach.

Jack asleep after his injection. Had to put his soft collar on as he was stopping breathing!

By this time it was nearly 6pm and Jack was due his epilepsy meds so I asked them to hurry with the x-ray so that he wouldn't be too late in getting them. He had his x-ray at 6.50pm but there was problems there as they had no hoist so Holly and I had to lift him out of his chair, trying not to hurt his leg but not succeeding at all and causing him huge discomfort.

We then had to pin him down so that he would be still for the x-ray which was like trying to hold a slippery salmon!!!!

Jack's spiral fracture on the right side

We spent another half an hour waiting for someone to come and put a back plaster on to stabilise his leg temporarily. Each time, we saw a different person and I had to go through the whole story again and again to the point that I wanted to scream.

Again Holly and I had to pin him down while they put the back plaster on. No mean feat let me tell you and our stress levels were getting higher by the moment. Once that was done, again we had to take a seat to wait for another x ray. This time, the girl got a set of steps so that we didn't have to lift him then afterwards we'd to take another bloody seat and wait to be told if we could go home. By this time it was 8pm and we'd been there for nearly 4 hours.

the half plaster cast - back slabbed only

We were leaving at 8.10pm and had stopped in reception to put Jack's jacket on when my Dad arrived with Jack's medicine. Seconds after that a nurse appeared to tell us that they had changed their mind and they were admitting Jack. She couldn't tell me why but the decision had been made and there was no point in arguing.

I sent Holly and my Dad off to get feed, pyjamas, nappies etc for Jack, telling them I would meet them at the Children's ward shortly. I was stressing about Jack getting his medicine but was assured we would be put up to the ward shortly.

By the time the doctor came to speak to me, an hour had passed and I was slowly losing the plot. Jack had been sitting in his chair for 5 hours, clearly wasn't comfortable and still hadn't gotten his meds. Add to that the fact my mobile phone battery had died so I couldn't text my Dad or Holly to ask them to come back with the medicine so I grabbed a nurse and gave them a piece of my mind. Jack finally got his meds at 9.30pm when Holly brought them down.

The doctor appeared again to say that he needed to check Jack's chest so took me to an examination room. He asked me "so Jack did this by trapping his leg between two filing cabinets?". I knew I was about to blow a gasket at that point cos I had told the story so many times and each time they heard something different.  One time it was a desk, another time the cabinet fell on him and I was getting so bloody tired of correcting them. It was like Chinese Whispers! So this poor doctor kinda got it. He got 6 hours of my pent up frustration, stress and worry slamming into him as I spelled out to him exactly what happened through gritted teeth.

Holly, realising that this poor guy was gonna get it, came into the room and asked me if I was all right and I calmed down a bit. Then he asked what meds Jack was on so I started listing them, one after the other, in quick succession til his face registered that maybe he had better start writing them down! I did relent and give him a copy of a list I keep with Jack's meds and as he headed out the door, my Dad came in. It was now nearly 10pm.

As soon as I saw my Dad again, I just fell apart, couldn't stop crying.

Finally at about 10.15pm we were taken up to the Children's ward. Jack was sleeping by now and I was completely exhausted, starving and extremely traumatised. I made sure that Jack was settled, that the nurses knew all about his new peg and then I headed home via the pizza take away but to be honest, I could hardly eat.

the full cast in a groovy purple colour

fast asleep waiting for his x ray

The next day there was more hanging around in A & E whilst we waited for the doctor and male nurse Glen to put on the proper plaster cast. Glen turned out to be good company and was a welcome distraction from all the hanging around. Jack had to have a full leg cast in the end, in a lovely shade of purple. He coped beautifully with the pain while they stretched his leg out and was asleep before he even had his x ray after.

I finally got him home at 5pm Thursday night. He slept most of that day and was as bright as a button the next day. So much so that, he even tried to get up on his knees in a full leg cast no less. WTF!

As for me, I am still totally traumatised but now I can laugh about it, just a little.

Wednesday, 4 April 2012

We made the news!

I have finally come down from the high that was last week.

Since then, Holly has been interviewed by the local paper and we, as a family, have all had our photo taken. The rest of the week was so busy that I had kind of forgotten about the article until my friend Angie sent me a text to say that Holly and Jack were on the front page!

After that, I kinda had to rush out and buy up quite a few copies. I got a bit emotional when I saw the picture of my two gorgeous kids. I am so so proud of them both. We have been through so much over the years and I had to stop myself from telling the lady at the checkout that it was my kids on the front page!

Front Page
Page 4 Picture with Diz, Holly's best pal

Page 10 Editor's comments
She was even Quote of the Week

I was getting texts the whole day about the article from friends and professionals who deal with us as a family. My dad even stole the big sign from the newspaper stand later that night as a momento! Tee hee hee.

Things are very up in the air right now. The companies that won the contracts for respite, care in the home, special needs playgroups, clubs etc have now officially taken over. As per usual, nothing has gone smoothly and the transitions are causing a lot of worry on the part of parents, especially those with children who have Autism as change, however small, can affect them badly and usually it is the child and parents who suffer the consequences. One of my friends, Moira, is particularly worried as her child will not know any of the new staff at the playscheme her son attends and there is only one member of the old staff staying on.

I am also affected because I lose my Crossroads carer Marion, who has been with us for 9 years. Also the new company Allied do not think they can provide the same kind of care that Crossroads provided. Which leaves me with no care provider for the 6 hours a week that I use to spend with Holly. Luckily there is a two month transition for this so I have been told that I may have to go down the route of Direct Payments which I really don't want to do. I already have enough to do. This people is the plight of carers. Nothing is ever simple and straightforward. Energy that you don't have is used up worrying, fighting and searching out for the right kind of support, care, education etc etc. The list is endless!

Saying all that, I refuse to get down about this. I refuse to let it take the smile off my face. It's a new month, it's a new day and I'm feeling good.

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