A real pain

Since the party I have been pretty exhausted and have stayed close to home.

My sister, Kay, the birthday girl, has a swollen leg after someone landed on her while she was on the bouncy castle, then it became infected. An unexpected momento!

My Dad was also suffering. He had pulled muscles in his chest and shoulders and was in a lot of pain. I nipped up and gave him some aromatherapy oils to rub into his muscles and it seemed to help. I couldn't think why he was so sore at first and then I had an image flash through my mind of him doing forward flips whilst he was bouncing to his heart's content.  What can I say? If he hasn't learned by now at the age of 75 then he never will! At least he had fun.

that's him in the middle

This week I have been getting very frustrated.  It has taken me a year to win my fight to get help getting Jack up in the morning and getting him to bed at night.  The funding is now in place but there is no agency to provide the service!!!  The only two services in Elgin that provide respite to children are Alba Place and Crossroads. Crossroads carers are not allowed to come in and only provide personal care. They can provide personal care if they are also providing respite but not as a stand alone service which is what I require.  If they ask Alba Place to provide the service, this will cost a lot more and I will get reduced hours! I could scream!

It will soon be a year since I applied to the local council to have Jack's bathroom re-vamped. I have had all the plans approved, the funding approved, I've signed all the forms (about a month and a half ago) and now I wait. The company who have been given the contract are allowed 4 months to honour it. I wish they'd bloody hurry up!

Also the rep who I saw re Jack's bed was supposed to have it ready for me to see this week as I told him I would be away the week after but no, not a word from him. No doubt I will get the call next week when I am not here. Grrrrr!

Then last Thursday morning I had a run in with Father of the Year. The week before I had told him on the phone that I needed him to get more bloods taken as they were looking at Jack's genetics again. When I saw him in person two days later, I asked him if he'd made the appointment as he'd just come from his GP and he said no. Taking a deep breath so that I didn't lose it, I carried on frantically looking for the hospital form for the bloods to give him but I'd put it somewhere safe, so safe that I couldn't remember where! I think every woman does this or is it just me?

Anyway I told him to just go ahead and make the appointment and when he had, I would give him the form.

Fast forward a week later, with no word from him. His mum, Granny Mac came up to the hospital to see Jack and I asked her did she know if he'd made the appointment or not. She didn't know but she did inform me that he was flying away the next afternoon. I was stunned! So I gave her the form (I found it shortly after he'd left) and told her that it was imperative that he get it done asap and could she give him this form first thing.

source

I was so angry! Next morning, I called her from the hospital to see if she'd passed on the form and to ask if he'd done anything about it and she said she would call me back.

Minutes later, I received an unidentified number on my mobile which I answered and lo and behold it was Father of the Year himself. Basically he was totally arrogant, denied knowing anything about the blood tests, then tripped himself up by saying "this is the first time I even knew what they were for" to which I replied " so you did know about them, just not what they were for, well that's cos you don't listen!"

He informed me that he didn't have time to get this done as he was running around packing, don't you know and when I told him that "the staff on the children's ward would be willing to do it if he came up straight away and it would only take 5 minutes of his time" he told me "that he might manage or he might not" and also stating that he "would be back on the 7th July and it would get done then, no sooner, no later" and then he hung up!

I was shaking by the time the call finished. I looked at Jack lying in his hospital bed and I just crumpled. I had held myself together for two days and he was my undoing. I couldn't stop crying and my poor Dad just held me when he came in cos he really didn't know what else to do!

I had a course to go to but I was in such a state walking down the ward that one of the nurses, Yvonne, who has known us since Jack was little, took me into room to get myself together!

This is why I have nothing to do with Father of the Year. He treats me like an idiot, talks to me like I am something yucky that he has just stepped on, he is totally ignorant and he is always right and I am always wrong.

My parting shot to Yvonne was that in my life he was as annoying as a boil on my butt or a pimple on my arse  as us Scots say. You know it's there, you can't see it but you feel the pain of it and itching doesn't get rid of it either and every time you sit down you are reminded of what a total pain in the ass it is! Well that's him!

She fell about laughing when I said this and so did I.  Aaahhh laughing is so good for the soul.

Stop The Bus, I Wanna Get Off!!!

It's 5.30am and Jack has just had his 6th seizure in the last hour and a half.  I have just had to give him Midazolam, which is a rescue medication to try and stop them so fingers crossed. This is day four of sleepless nights and I am completely shattered.   Welcome to my world.

They are not big seizures, just a few minutes long but they are tonic clonic ones, which involve every part of his body.  Afterwards he is completely exhausted and needs to sleep.

Description of Seizures

Since his Vagus Nerve Stimulator was implanted a year and a half ago, his seizures have gone down from between 10 and 20 a day to 2 to 10 and he has even had a day or two without ANY!!!

Most of his seizures these days are through the day so I have been managing to get caught up on years of very little sleep but lately they have been through the night as well as through the day and we both very quickly become exhausted.  This weekend has been particularly hard going.

Yesterday, after putting him on the bus to school, I could have easily listened to the voice from the duvet shouting " come back to bed" but being Christmas, I had so much to do.

So I found myself by 10am in the Post Office, fighting my way through this massive queue of people just to get to the store part to buy a couple of jiffy bags, brown paper and a box.  As I fought my way through, people were chatting around me and most seemed in good spirits with the odd person muttering under their breath.  As it was so busy there was no one to serve me but as I hovered near the cash register eventually someone spotted me and came out.  After battling back through the queue and out to my car, I was seriously thinking that perhaps these presents could wait until January to be sent!!

But no, I was on a mission.  I then drove to my dad's house, had a cup of tea with him while I put all the presents into the relevant bags, boxes etc, addressed them and got them ready for posting.  This took me about half an hour then off I went back to the Post Office, which I drove past when I spotted that the queue hadn't gotten any smaller.  I then drove into town but couldn't get a parking space close enough to that Post Office so I gave up and went home.

I then went out with the dogs for an hour, came back, jumped back in the car and headed back to, you guessed it the f**king Post Office.  I was determined that this time, come what may, I was definitely leaving empty handed!  I had to park a wee bit away from the damn place and after trying to balance two boxes, 3 jiffy bags and numerous envelopes, off I set.  I only walked about 2 steps when I realised I hadn't locked the car, so quick about turn to "point and lock" and the jiffy bags fell off the top of the pile and landed in the middle of the road.  I scrambled about trying to pick them up without dropping anything else and the whole lot toppled over!  Thank god nothing was breakable.

Finally I made it there, with said packages slipping through my hands and being held in place by my fingertips to find that there was no queue.  If I hadn't been bogged down with stuff, I swear I would have done a wee dance, so gleeful was I.  You see, it doesn't take much to improve my day.  It took what seemed like forever to process everything, which I know it didn't but in the time it took, the queue had reached mammoth proportions again but I couldn't help grinning from ear to ear as I left, mission complete.

I then headed to the supermarket for some food cos my fridge was empty and Old Mother Hubbard's cupboards have more in them than mine do.  I arrived back home 15 minutes before Jack was due home and I literally collapsed on the sofa, dogs all over me, demanding attention.

But there was no time for slacking, I had to get some housework at least, done before the ankle biters arrived home making more demands on my time.

I had barely started on the housework and Jack was home.  I checked his bag and read all his diaries to see how many seizures he'd had and what his fluid intake was at before I took off his jacket and hoisted him into his big comfy chair.  Then Holly was home, we all had to be fed and I'd to nip out to the ATM to get cash cos my niece Diane was coming round to cut the kids hair and cut and colour mine.

Diane and her boyfriend Chris, who has just come back from Afghanistan, appeared around 6pm and she took me outside to show me what he had bought her.  A Mini Cooper.  OMG I was so excited for her and inside it was just so girlie, like Diane, with different coloured lights lighting up the interior, going from red through to purple.  It was very cool and I told her how jealous I was and how much I wanted a "Chris" who would buy me a girlie car and how lucky she was but I think she knows :)

Bitch! Jealous much....me? 

By the time Diane was finished with Holly and Jack, my body wants to sleep but the mind has so much more to do and I nearly nodded off while she was putting in the foils! Thank god for Granny Mac who comes on a Monday night to shower Jack and put him to bed!

An hour later and I feel more myself again.  I no longer have roots, which were nearly grown out and worst of all, had bloody silver bits through it and were sparkling brighter than tinsel on a Christmas tree.  No, people, I am back to my usual red with dark purple through it.  Now that I have written that down, it doesn't sound right, but believe me it's GORGEOUS!

Diane left at about 9pm and about 20 minutes later my friend Emma and her boyfriend Mark appeared so I made us all a cup of tea and they had a taste of Jack's baking that he took home this afternoon.  It was a mincemeat tart, very festive and quite yummy too. They left at around 10.30pm.  I set up and connected Jack's feed and put the dogs to their beds before climbing the stairs to bed.  The day didn't end there though as Holly and I had been sniping at each other all evening and we had words before she went off to bed.

I then couldn't sleep until I sorted it out with her and finally fell into bed at midnight. Poor Holly, she has been so miserable after splitting with her boyfriend of 2 years in September and she is finding things pretty tough right now and the combination of that and trying to be "upbeat and happy" as it's Christmas is taking it's toll on us both.  Sometimes you just can't do it!

So that was my day yesterday and here I am 5 hours later, blogging cos I can't get back to sleep. The midazolam seems to have worked and Jack is sleeping peacefully.

There is still so much to do, I haven't even started to decorate the house and just the thought of it, is such a mammoth task that I just want to pull the duvet over my head and hope it will all go away.  Don't get me wrong, I LOVE CHRISTMAS just not all the hard work that's involved in the run up to it when my life is already crazy and hectic as it is.

I now have to get up and give Jack his morning meds, wake Holly and see to the dogs. I need to assess Jack before I decide whether he is going to school today or not but I want him to as it's his Christmas party and it would be a shame for him to miss it but if he does, well that's just life with a child like Jack and you just have to roll with it.

Onwards and upwards :)