Sunday, 31 July 2011

Busy busy busy!

It's been another very busy week.

On Wednesday, the kids and I went through to Aberdeen, picked up Kathy then we headed into town to pick up my friend Phyllis, who is in her seventies.

The journey had taken two hours and I didn't feel like driving much further but Phyllis didn't want to go to the lovely garden centre just up the road from hers so I ended up driving out of town again to the Holiday Inn in a place called Westhills.  Phyllis struggled to climb up into the car this time, which was a bit worrying and I'd to squeeze her wheelchair in behind Jack's.

Once at the Holiday Inn, the Italian restaurant that Phyllis had set her heart on was closed and they were only serving bar meals which she turned her nose up at as "she wanted a proper meal" don't you know! I explained that it was proper meals and not just sandwiches and she relented.  After our lunch, which was lovely by the way, she wanted us to take her to the supermarket, which we did but she refused to use her wheelchair and wanted to use a trolley instead.

By this point Holly and I had taken her wheelchair out and in the car about 4 times and I was beginning to wish we hadn't brought it but sods law, if we hadn't she would have needed it! I hadn't slept very well the night before so I was feeling pretty tired and all this activity was wearing me out.  Eventually Phyllis had filled her trolley with what she needed and had to take a seat as she was looking very tired and pale so Kathy and I put her shopping through the self serve tills for her. When we got back to where she was sitting, she decided that we should have a cake with our coffee when we got back to hers. We explained for about the 10th time that day, that we couldn't get Jack into her house because there were 3 steps up to her door and we wouldn't be able to lift him! Eventually she got her way by saying we could sit in the garden and I agreed to that, anything for peace. Kathy and I offered to go and get the said cake but Phyllis insisted on going herself as she wanted to choose it.

Back at her house, she was all for leaving Jack in the car while we sat outside where he could see us but I squashed that idea, as it was so hot and stuffy in the car, the poor boy would have melted without the air conditioning on. So I struggled up her uneven path and onto the grass with him in his chair. He really wasn't having a good day so I was keeping a watchful eye on him. He was very listless and lethargic, had been sick a couple of times and was just generally not himself.

After a quick coffee and cake I got Jack back into the car for the 8th time that day and we headed off. By this time, exhaustion was setting in and I didn't even have the energy to stop for a cuppa when I dropped Kathy back at her house.

Back home, my dad arrived to help me take the furniture out of the room next to the bathroom. It was big heavy stuff so it took us a while. In the meantime, Holly was watching Jack and putting away the delivery of food that had just arrived. She really is such a star!

I finally fell into bed around midnight, having finally finished emptying the bathroom and the other room.

I was up early the next morning expecting plumbers around 8am but they didn't arrive til after 9am. Within an hour my bathroom was just a shell of it's former glory. But they have been very busy as I now have pipes and a shower tray and now we just have to wait for the flooring and wall panels to go in next week and then everything fitted on top.  These guys have been great. They've made very little mess and have gone out of their way to be helpful.





Can't wait til it's finished as poor Jack is unable to get a shower til then! I did attempt to wash his hair this morning, with Holly's help by having his head hanging out over the bed. It was hard work but we managed and I could tell by the look on his face that he was feeling better for it.

this is the room next door which is being turned into the laundry room

pipe for the washing machine....yipee!


I also got a demonstration of Jack's new bed on Thursday afternoon. It is more clinical than I am used to but I am sure I will get used to it. I did insist that the padding was changed from cream to a more child friendly blue as it truly looked horrible.

So things are a changing my friends, all for the good at the moment. Jack's seizures are still quite stable so I am hoping for a easy, chilled week next week.

Wednesday, 27 July 2011

Hello! I'm back!

Hello from Scotland! Bet you thought I'd disappeared? Sorry to worry some of you but thanks for your emails asking if we are ok.

It has been a busy week.  I had a lovely birthday. Thank you for all your birthday wishes. I got lots of lovely cards and presents from my family and friends. My friend Kathy and her two kids came to visit and stayed at Rachel House with us. We visited the local Scottish  Deer Park and since I forgot my camera, I thought I would take photos with my mobile.  Now I've always found it quite difficult to take photos with a mobile cos you have to barely hold the damn thing cos otherwise there are fingers in the photo. So there I was, snapping away outside the outer fence of the wolf enclosure, when I lost my grip on the phone as I was taking a picture and dropped it inside the enclosure!

they were really pretty close up

I let out a squeal and Holly and crew came running to my rescue by grabbing some sticks and they managed to drag my phone to the fence where I clutched it lovingly! The noise I'd made had attracted the attention of some stags in the next enclosure so off we went and I took pics of them too. Barely 5 minutes later, we were back taking pics of the white wolf which had gotten up from sleeping and was starting to pace and I did it again! You should have seen the look on Kathy and Holly's face when I told them through my hysterical laughter that I had indeed dropped it in the enclosure for the 2nd time.  Needless to say, I was ordered to put the damn thing away! Spoil sports!

Holly and Erin




James feeding the deer
Back at Rachel House we all sat down to dinner.  I had barely finished when I looked up to see Kathy carrying a birthday cake complete with a 4 and a 5 on it. I'll kill her! LOL Everyone sang Happy Birthday and we all had a piece of that lovely cake. Turns out Kathy had brought a cake with her but the staff at Rachel House had already bought one. How cool is that? And they gave me a handmade card that Jack had helped them to make.

We spent the evening with Jack before setting of to see Harry Potter, parts 1 and 2. I have to say, seeing them both together was a brilliant idea and well worth doing. Everyone managed to stay awake and we arrived back at Rachel House at 2.45am, tired but happy. It had been a great birthday.

Jack's seizures seem to be calming down this last week. He went into respite on Thursday for the weekend and Holly and I flew to Dublin for her belated birthday weekend. The first day was spent strolling around the many shops there. We stopped at this chocolate cafe bar called Fiji's where I had a hot chocolate with chilli. OMG it was to die for, chocolate heaven for sure. It was the best hot chocolate I have ever tasted!

After much shopping we wandered back to our hotel and fell into bed. The next morning we were up bright and early as Holly wanted to go to Dublin Zoo. We decided to take the Hop on Hop Off bus tour of the city which would eventually drop us off just outside the zoo. So there we were on the top of the open top double decker bus, enjoying the view and the live commentary. It started off lovely and sunny but very soon it was bloody freezing! Being die hard tourists, we were not going to be wimps and move to a sheltered part of the bus, no no, not us, instead we giggled and shivered, ducked to avoid low hanging branches, oohed and aaahed at everything, giggled and shivered even more until finally it was time to get off the bus. Down on the ground it was a sweltering hot day! Who'd have thought it???

We had a great time wandering around Dublin Zoo and Holly being the same kid she was many years ago, insisted that I see every animal from EVERY angle and was not satisfied til I complied! From there we hopped on the tour bus again and was dropped off in the middle of a zombie apocalypse, I jest you not!

We stood and watched all these students in their zombie gear demand our "brains" as well as money for the many good causes they were raising funds for. Great great fun.

they were really getting into character

zombies marching for "brains"

some of the make up was ace

From there we went on the Viking Splash Tour which was hilarious and involved lots of yelling at unsuspecting Celts when they weren't looking. By the time we had finished on that, Holly's hay fever was really giving her problems and she was literary sneezing for Britain. She was so miserable with it that we jumped into a taxi to get us back to the hotel quickly so she could take more pills. Once she was medicated and provided with enough tissues to wipe half a dozen snotty noses, we headed back down to reception.

our Viking vehicle

Getting ready to roar at unsuspecting Celts

We needed life belts for the "splash" bit of the tour

I had arranged to meet up with C from the blog Looking for Blue Sky for a coffee.  She appeared about 10 minutes later with her daughter Smiley who was a bit under the weather. Jack and Smiley are very similar in ways, both have unique conditions and both face their disabilities with utmost determination and the purest of hearts. Smiley is the perfect nickname for her daughter who wasted no time, despite feeling under the weather, in giving us a beautiful smile. Considering it was the first time we had met, there was no awkwardness between us and we were chatting away, trying to cram in as much as we could in the little time we had as we both had daughters who were feeling lousy!

Poor Holly suffered the rest of the night and was much better by the time we flew back to Aberdeen as the weather was cold and windy and didn't affect her so much.

Back home, after picking up Jack and the dogs, I was hoping for a few days of calm but no, I got a phone call yesterday from the plumber saying they were coming today to start Jack's bathroom! I was in shock because I needed to clear the damn place of all his stuff and equipment before they could start so I managed to put them off til tomorrow and then we have a week of total uproar while the rip the bathroom apart and hopefully make it look lovely again.

So Holly and I quickly set to work and it is more or less done. Phew! No rest for the wicked eh?

Have a great day folks.

Tuesday, 26 July 2011

You are a winner!

Finally I have gotten around to drawing the winners of the Blogaversary Prize Giveaway.

I was giving away a wee box of Scottish Goodies and also a customised set of children's high top boots which Holly worked on.

So I popped all the names into a hat, mixed them up and asked Holly to draw out two winners.

So without further ado, the winner of the Scottish Goodies is

It's a bit faint but congrats Bouncin' Barb

and the winner of the very cool shoes is

Shiloh had to get in on the action! Congrats Sush


Well congrats to the winners. All I need now is for Bouncin' Barb and Sush to let me know where to send it to. Email all relevant info to lyndylou38@googlemail.com

It's been a bit hectic here since we got back from Rachel House so normal blogging will resume in the next day or two. Have a nice day my little gigglers.

Wednesday, 13 July 2011

Stressed, what, who me?

Greetings from Rachel House.

I had an eventful time getting here. I drove the hour and a half to Aberdeen to pop in to see my friend Kathy who was providing us with lunch and also to give Holly a chance to see the dogs since she hadn't seen them all week.

Jack had quite a few seizures that morning so I was a bit stressed when I arrived at Kathy's. I was busy telling her that I'd forgotten Jack's bibs and feeling bad as his secretions are really bad at the moment when she said "the important thing is that you remembered Jack and you remembered his medication". That's when I looked at her in complete horror as I realised that I hadn't put them in the car!!! She thought I was joking at first but then when I was still looking horrified, the penny dropped that this was a complete disaster!

source

Not one to hang around, I grabbed her house phone, phoned my Dad, explained the situation and asked him to go to my house, pick up the meds and the bibs and meet me in Huntly which is kinda half way between Aberdeen and Elgin.

Luckily for me he was in and wasn't away gadding out and about or I would have had a 3 hour round trip as opposed to an hour. So off I went, met him, checked the meds were all there, thanked him profusely and headed off again. Thank god for my Dad.

I had enough time to grab a cup of tea and a sandwich from Kathy before continuing on our journey.

We got to Rachel House around 4.15 and we quickly got Jack settled in. He had more seizures and was feeling pretty lousy. The rest of the evening was spent answering questions again because the last time we were in, none of my answers were recorded in the care plan and they didn't have any of Jack's routine written in.  They weren't sure if it had gotten lost or just not filled in by the the people looking after him the last time and Jack's name plate that we spent hours making him has gone missing too, so we are a bit gutted by that as we'd spent so much time on it! They couldn't apologise enough!

I was still answering questions most of Tuesday and I had called the epilepsy nurse at Edinburgh Sick Kids as previously arranged re Jack's seizures so she came out for a visit. Straight away she upped both meds this time, reviewed his epilepsy protocol which still wasn't right and we discussed other drugs and other forms of rescue meds which I truly truly hope we don't have to use as it has to be given rectally and it is very very undignified, distressing and basically just awful. Fingers crossed people that the meds start to work to get us over this bad patch.

source


By 7pm I felt like escaping so I grabbed Holly and suggested we go to the cinema. She didn't need to be asked twice so we let them know where we were going and bolted out the door!

We went to see Bridesmaids and OMG it is so so funny and rude and I laughed til I cried. The best kind of therapy.  While we were there, we booked tickets for the showing of the new Harry Potter film Deathly Hallows Part 2 at a minute past midnight on the 15th July which meant we got free tickets for the showing of part 1 which was on just before hand. Woo hoo bargain or what. I am so excited. This is my birthday treat to myself as I will be 45 tomorrow (Thursday).

In my head I am still 21 and often I act even younger than that according to Holly so I am definitely not mature yet. Being grown up is soooooooo over-rated!



Monday, 11 July 2011

On the road again

Yesterday, Sunday, the house was very quiet.

Jack was still sleeping most of the morning and I had no dogs. I took them through to Aberdeen on Saturday to stay with my friend Kathy for their holidays as we are off back to Rachel House today. This time for a week. The dogs have settled in well and didn't so much as give me a backward glance when I left. Traitors! So they aren't missing me one bit as they are getting a major amount of spoiling there.

Holly got back at tea time after being away for a week. Her boyfriend, David, surprised her by hiding in the kitchen when she came into the house. She wasn't expecting to see him so when she caught sight of him, she threw herself into his arms! Aaah young love.

I am really looking forward to going to Rachel House and I am planning a few days out too with Holz while they look after Jack. It's my birthday this week too so I am excited about being pampered for a change. It will be a huge improvement on last year when I was too exhausted to care that I was a year older but I did manage a rare night out a few days after. A girl has to get her kicks somehow!

source

While I am away, I am extending my Blogaversary Giveaway, so if you haven't already put your name down to be drawn out of the hat, then go here.

I am taking my computer with me so that I can keep you posted on all my escapades while away.

Have fun my little gigglers.

Saturday, 9 July 2011

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.

Monday, 4 July 2011

A birthday bash in the garden

It's been a crazy three days!

Friday was spent cleaning my house in case it rained and everyone would have to be inside. I then took Holly and her friend Diz out for tea, while the carer was in looking after Jack.

After I dropped them off at Diz's house, said my goodbyes to Holly as she is off with them for a week, I rushed home and finished the last of my tidying. I had barely finished when my friend Kathy arrived with James and Erin, then hard on the heels of them, Jacqui and Angela.

That's when I collapsed in the swirly chair and enjoyed the cup of tea that Kathy made for me. Then we had a few glasses of wine before going to bed.

We were up bright and early the next morning. I didn't have to worry about Jack cos Granny Mac was looking after him. We nipped out to get a few things, leaving Kathy in charge. We had only been away bout 5 mins when she called. The bouncy castle had arrived 2 hours early and didn't fit! Luckily they had a slightly smaller one so they put that one up instead. They couldn't get a hold of Liam who had ordered it and as they wanted the money up front, so we had to go back with the money. Then back out to get a gas bottle for the new barbie we had bought, some food and drink, then home again. We spent the rest of the morning, putting out chairs, putting up banners and balloons and getting organised.

Jacqui helping with the banners

Kathy getting ready to decorate

We had to get my nieces fiancĂ© over to help put the new barbie together cos there was a lot of screws and bits!

ooh err...a diet coke moment for sure!
James helping

Then Liam arrived with all the food etc and he also pitched in to build the barbie that took over an hour to put together.

I finally sat down after running about like a mad thing when I suddenly realised we'd not gotten her a cake so off Jacqui and I went to get one. No sooner had we arrived back than it was discovered we'd the wrong kind of gas bottle for the barbie so Jacqui and Liam rushed off to change it! Aaaaaaaaaaahhhhhh!!!

Then around 2.30pm, they went to fetch the birthday girl who was shaking like a leaf, all worried that no one would turn up and that they wouldn't enjoy themselves! I hugged her and pushed a glass of wine into her hand and sent her off to sit down.

After a few sips of the wine, she relaxed. People started appearing after that, bringing gifts, chatting to each other, enjoying the beautiful scorching day and partaking of a bounce on the bouncy castle. My friend Suzi brought her face paints and stencils so nearly everyone got a tattoo. It was so much fun and the bouncy castle was a total riot!

Kay wouldn't wear the huge birthday badge her kids bought for her so, when she wasn't looking, I just held the badge out in front of me and took a pic of her at the same time! Aye, there are ways and means of getting your own way!!!

tee hee hee....do you think the badge is big enough???
my wee sis

my eldest sis Julia and her daughter Rosie
the birthday girl having a bounce
Jack chilled out

the biggest child of all....my dad!

he finally coaxed Angela on
showing off my temporary tattoos

even Jack didn't escape
The party was a huge success and the sun shone on us the whole day. We danced, we sang, we drank, we bounced, we laughed, we hugged and there were a few tears too, thinking of those who are no longer with us. To add to that, every one of us had an assortment of bruises and aches and pains from bumping into each other on the bouncy castle.  I actually had Chris (the hunky, bare chested one in the photo) land on my back and I thought I was gonna die! I did say to him after that if we hadn't landed back to back and the other way instead, I might not have complained so much!!! Tee hee hee.

Around about 11.45pm the party was winding down and people were starting to leave. After sending my dad on his way at 12.45pm, I locked up, put the dogs to bed, got into my pj's and came back downstairs and ordered everyone to bed! And they went!

Next morning I was up at 7.30am as Jack had a seizure. I couldn't get back to sleep so I just sat with a cuppa enjoying the peace and quiet.

It was still gorgeous outside so I sat on the patio, drinking in the sun, exhausted but happy. What a bloody week!

Friday, 1 July 2011

Thank god it's Friday!

It's been a stressful few days. On top of the fact that Jack was in hospital, I have still managed to fit in a trip to David's (Holly's boyfriend) school with my niece to shave off his hair for charity, go on another short course, see the rep re Jack's new bed and have a run in with Father of the Year!

Holly arriving at David's school
David with long hair wearing Holly's hat
after - holding up the hair he is donating for wigs for children with cancer


Jack got out of hospital yesterday (Thursday) at 2.45pm.

Just before he left, he had a 6 and a half minute seizure, then one in the lift at the hospital and I was kinda thinking....here we go again!

He settled down though and we had a fairly enjoyable afternoon til he had a seizure about 6pm and was very sick but luckily he didn't aspirate it.

No time to worry about it though, because I had to get him changed and ready for going out to Holly's Prize Giving.  My lovely girl got the prize for best in Art and Design and best in Business Management.  It was a bit of a rush but at least this year, I didn't have to be in two places at once!

Jack unfortunately, missed his Prize Giving because he had decided that he would rather flirt with the nurses at the hospital than go to something like that.

As per the last 5 years, I did my duty and whooped and hollered for all I was worth when she got her prize and I also did the same for all her friends. I have to say that I am the noisiest parent there and I take great pride in that as all other parents behave impeccably, apart from the ones sitting with me! They just have to join in!

Holly was on a high last night afterwards and I was so very proud of her.

Today is the last day of school and then it's 6 weeks of holidays. Holly is off tonight for a week with Diz and her mum Jemma.  Jemma has the same sense of humour as me and she has already started winding Holly up, so much so that she said yesterday "I am so looking forward to the next week, it will be such a laugh with these two". I am gonna miss her but I am sure she will have a blast.

Now today, I am totally stressing out cos it's my sister Kay's 50th Birthday tomorrow and she is having the party in my garden. She wanted a bouncy castle and a BBQ! The weather has been horrible here so I have been frantically running around trying to tidy my house that has been neglected the last few days so that if it's raining tomorrow, I wont be mortified when people have to come into the house. Pray for sun people!

I will also have a house full of visitors tonight who are coming for the party so I have to get their rooms sorted but they will pretty much have to take me as they find me, which they will, cos they are good like that!

Roll on Sunday, when I can collapse in a heap and not move! But before I go, I will leave you with a pick of Jack at his prom last year.

a true Scotsman

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