Contrary to popular belief I don't DO drama!

On Monday, Jack had a 22 minute seizure at school. He was sleeping when I went in to see him but he only required one dose of rescue meds.

It's the last week of school and I did say to them that Jack started school with a bang so therefore he was maybe gonna finish the year with a bang!

Tuesday, after being out with my Dad, I got a phone call from the school at 1.52pm saying that Jack had just had 3 quite big seizures, one after the other and they were about to give him a 2nd dose of rescue meds but that it didn't look like it was going to stop. Knowing that they were going to call an ambulance, I told them that I would meet them at the hospital.

He was lying on his side when he came out of the ambulance on the stretcher, on oxygen and and pretty much out of it.  They whisked him into a room then all hell broke loose. People came running from all directions and into the room which totally freaked me out! It was explained to me that as he wasn't breathing too well it is policy to call for the emergency team to be on hand. It was a bit scary sitting outside seeing everyone coming and going but they managed to stabilise him. He had had another seizure too so they gave him more diazepam.

Dr Gray's Hospital (source)

The problem with giving him all this drugs is that it suppresses his breathing and can lower his blood pressure, which it did and then they had to put him on IV fluids to keep him hydrated.

Up on the ward, they were still struggling to keep his blood pressure up so they took some more bloods, an ECG and put a catheter in to monitor his fluid output.

My head was banging by this time and Holly had arrived so she nipped down to the hospital shop and got us both a drink and a sandwich. I managed to beg some headache pills from one of the nurses just as my Dad appeared with Jack's medicine box and his feed pump and then the carer came in, so after making sure that it was safe to go, I took Holly home for her tea and to let my poor dogs out.

When I arrived back Jack was awake and quite restless but then he was sleepy again. I held his hand and sang to him and then after a while I stopped, sat back in my seat cos I was getting tired but then I noticed his little hand come up and he grabbed mine and I laughed cos this was his way of telling me that he was liking the hand holding and singing so I carried on, til he fell asleep.

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I left bout 9.30pm, went for take-away, fed myself and Holly then fell into bed.

Lets see what today brings.

Laugh til it hurts

With Holly being in the show, The Dark Cabaret she missed the first two weeks of 6th year.

One of the classes she is taking is Higher Psychology and she was worried because she had already missed over 4 classes.

Last Tuesday she came home stressed to the eyeballs muttering, saying "why on earth did I take this course, what was I thinking?". Thinking it was maybe too difficult for her I asked what was up. And out it all came.

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She told me that the lecturer was telling them all about the different conditions that can affect a person's brain such as Syphilis, Schizophrenia etc. She was frantically scribbling in her jotter for all she was worth, trying to jot it all down for future reference, all the while getting more and more hyped up! My hypochondriac, paranoid daughter was imagining all sorts of things happening to her and practically having a nervous breakdown.

I, on the other hand, was bent double, nearly peeing myself laughing as her eyes were getting bigger and bigger especially when she was going on about Syphilis.  Jack's O.T., Sue, was in the house at the time and she was in hysterics too.  I commented that, "really Syphilis is something she is unlikely to get" to which she breathed a huge sigh of relief until Sue said "yeah but you don't see the effects of Syphilis for at least 20 years and by then it's too late!". Well you should have heard Holly. "That's it!" she said, "David is not getting anywhere near me ever again, not ever, not even for so much as a kiss!"

By this time, I am crying, I am laughing so hard especially when she then goes on to mention that she has to look up and learn all about the different phobias a person can have and all the illnesses that can affect the brain and how it works. "Is this a wise thing to do?" I say through my tears "knowing what a hypochondriac you are?"

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"You're asking me? I'll have had a nervous breakdown by the time this course is finished!" She then went on to describe how the rest of the class were sitting back, calmly, taking it all in, while she was scribbling so fast and getting so agitated that her pal Lewie started laughing at her, cos he knows what she is like.

Later on that night, she was on the computer and was very quiet. Eventually she started telling me names of some of the phobias and what they were a fear of.  Laughingly she said that she reckoned that she had at least 10 of them so far!

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I peered over her shoulder and couldn't stop laughing because she was still only on the phobias beginning with A! I laughed so hard, I cried, poor Jack was looking on wondering if I had finally lost it! By this time Holly is also laughing and we were holding onto each other in hysterics, laughing so hard that it truly hurt! Finally I managed to get breath enough to say that "I am really looking forward to this course, it's going to give me such a laugh". Spluttering her indignation she muttered "awww gee thanks for being so supportive!"

I do so love our Mother/Daughter time.

Sleep deprivation is no fun

It has taken me a few days to recover from my lack of sleep.  On Friday by 5pm I couldn't even speak properly! So much so that when Jack's carer, Marion, asked me what I had been booking on the computer, I told her that I'd just booked Lublin for Holly's birthday.

I think both Holly and Marion thought I'd lost the plot and Holly wasted no time in taking the piss out of her Mum so much so that I threatened to cancel her trip to Dublin!  It didn't get much better either cos later on we went to the drive in at Burger King and I couldn't get the words out to place our order. I felt a right numpty and all Holly could do was laugh her head off.

Kids don't you just love them!

Jack has been a very sleepy boy this weekend. I think it's the increase in medication but I will keep an eye on him. He was so sleepy on Sunday that he slept through me washing and dressing him, getting him into the car and driving to Rothes to pick up Holly. Then we took the dogs for a walk and he slept through that too!

It's the last week of school and things are a bit manic this week. You would think that things would be slowing down but no. I have two Prize Giving Ceremonies this week, one for the Special Needs base and the other for Holly, on top of appointments, homework and taking my niece to Speyside High School on Wednesday to shave off Holly's boyfriends hair to raise money for his trip to Bangladesh. I will definitely have to get photos of that for you.

I took part in a True Colours Blog Swap which Jessica @ Duck Duck Cow was running. I had great fun shopping for this but I kinda forgot about the colours as such and just sent things that were Scottish instead! Thankfully Jessica was quite happy with this, phew.

This is what she sent me:

unopened box of goodies

my lovely goodies

This was so much fun. I had to take the pictures out in the garden because the colour wasn't showing up properly. Now that I have done it once and have a better idea of what to do, I definitely would take part in this again and I promise that I would stick to the colour this time, honest, definitely....emmm ok, I will try!

So today, as it is about the only quiet day I have this week, I am sitting still in my pj's doing very little. I am meeting a friend for lunch and I will take a trip up to my Mum's grave as it is 5 years today that she died.  I feel kinda weird, that spaced out way that you get and I miss her so much. She was one of my best friends, knew all there was to know about me, was a great Mum and her legacy lives on in us, her children.

This is for her.

 
Have a great day my little gigglers.

A crazy 24 hours

I am so so tired just now.  Burning the candle at both ends is really not good, this is when I realise that I am getting old!

The Take That concert was superb. It was that good that Holly reckoned it was the best concert she'd been to yet and I have taken her to a lot of really good concerts. It was held in Hampden Park Stadium in Glasgow.  We arrived at around 7.30pm, had a quick bite to eat then spent well over half an hour trying to find the right entrance for our ticket number. We missed the support band The Pet Shop Boys (one of my fav 80's groups) but we could hear them well enough from outside.

Hampden Park

Finally we got into the stadium but by then the heavens had really opened up and as we were in the standing part of the arena we were gonna get soaked. I didn't buy one of those plastic mac things, cos really, I have a street cred to protect and there was no way I was being seen dead in one of those! I'd much rather be wet!! And oh boy was I soaking by the end but it didn't dampen our spirits at all because Take That were equally wet once they came on and at one point the stage was running with water.

The concert about to start

The set lasted about 2 hours and we bopped and boogied away, screaming blue murder for Gary, Robbie etc like the groupies we are. All that leaping about wasn't good for me and at one point I had to hold onto my boobs otherwise I was gonna knock myself out! Oh the perils of big boobs.

Donna, Emma, Holly and Moi - soaking wet but having fun

The first song they played is my all time favourite and it's from the movie Stardust which we took Jack to see. I sing this song to him quite a lot and it's called Rule the World. I had a wee lump in my throat then thinking of my lovely boy back in Elgin. Then later, when Robbie Williams came on himself he said " if there is anyone out there who has someone who is no longer with you, or someone who is ill and needs a prayer, this one is for them" and he sang Angels. I nearly came undone at that point.

The concert finished at 10.45pm and it took us about 15mins just to get out of the staduim, a further 2 and a half hours just to get out of Glasgow as the traffic was almost at gridlock stage and it was 5.40am before we got home. We'd very little sleep on the journey home as there were 3 of us squished in the back of the car. Holly did manage to dose off leaning on me a couple of times so she wasn't as tired as me but still really tired.

We fell into bed straight away and was up again at 8am. I took Holly (after filling her with energy drinks)  to school as she had things on that day that she didn't want to miss and I came and fell back into bed only to be woken again less than an hour later by the school phoning asking me to come in and look at Jack as he had been sick and they weren't happy. I spent 2 hours there reassuring them that it was just a touch of reflux, came home, printed out my homework essay then headed up to the respite unit to collect Jack's stuff then from there went off to a meeting with my tutor.

I left there, went to the supermarket, then home, waited for Jack to get off the bus, put him straight into my car and went to the school to pick up Holly's friend Diz, then to the college to pick up Holly. Then straight home in time for Holly to change before Father of the Year came to pick them up to take them to Aberdeen where they were meeting Diz's Mum and Dad and going to the theatre to see We Will Rock You.

You'd think that by now I would have been ready to collapse but no I finally fell into bed at 11pm. I was zonked within minutes and slept like a baby!

ZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZZ

Busy, busy, busy

Yesterday was a pretty hectic day.

Jack was going into respite so I was up at 7am packing his bag. I don't normally pack it at that time of day but as I had a course to go on at 9.30am, I wouldn't have time to do it later that morning.

After I finished packing his bag, I then got him washed, dressed and ready for school. This takes me about an hour as it is very physical. I am flat out trying to get him ready in time for the bus arriving while the cool dude himself, carries on sleeping!

After I'd put him on the bus at 8.45am I rushed upstairs and literally threw myself into the shower. I was back downstairs 15 mins later, seeing to the dogs, dragging Jack's suitcase and meds into the car, then running around switching things off and throwing things into my bag. I arrived windswept and interesting at the course which was packed full and I struggled to find a seat cos I was 5 mins late....eek!

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The course was about protecting vulnerable adults from harm who are being cared for in homes, respite units, residential units etc. This is all part of the course I told you about a while back whereby the local council are trying out a pilot scheme to give unpaid carers a qualification for the work they do. We (myself and the other Lynn) are nearly finished the course and hope to be given our certificates at a graduation ceremony in October.

I really enjoyed the course but it was quite scary how easily abused these people are and it does strike fear in my heart at the thought of Jack being subjected to that but sadly most vulnerable people are actually abused by family members according to statistics. Quite shocking really.

I left the course and went straight up to Jack's respite unit to drop of his stuff and get his medicine checked in.  Everything has to be properly labelled, all pills have to be counted out and just enough given with a few spares, all doses of meds have to match the medication sheet which you fill in.  Unfortunately mine didn't because Jack's medication has been upped and the respite unit can't just take my word for it, they have to get written confirmation from Jack's consultant.

I thought I was covered because this particular medication was reduced just last year but alas no. It was only covered for reducing the medication not upping it. So I spent the next hour phoning doctors and waiting for them to call back til finally an hour and a half later the secretary called to say that she would fax a copy to the unit. YIPEE!!! If I hadn't managed to get anyone, I would have had to come up and administer the meds myself.

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The first thing the secretary said to me was "I called your home number first and couldn't stop laughing.  It is your answer machine that answers and says "Thank you for calling Dial-a-Shrink"?" I laughed too and confirmed that "yes, since we are all a bit mad in our house, it was only right that we should have a hilarious answer machine message".  Apparently she was so taken with it that she hung up, called her colleagues over and rung it again just so they could listen and she thanked me for giving them such a good laugh!

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This then got the girls in the respite unit calling my home number for a good giggle!  I finally arrived home at 3pm only for my Dad to appear asking me to book another part of his holiday for him. So far, I've booked the Eurostar, the Caledonian Sleeper and his hotel in Paris. My sister has had the pleasure of booking the travel insurance!  Dial-a-Shrink and Travel Agent, who knew I was this talented!

Today is slightly less hectic. Holly and I are off to a concert in Glasgow. We are going to see a group called Take That so we are heading off at 1.30pm. It takes about 4 hours to get there and we are driving back straight after. My friend Emma is driving and her boyfriend is going to drive on the way back so I can get a wee sleep in the back of the car as we won't be home til about 3am.

I can't wait. Tell you all about it later, I promise. Have a great day my little gigglers.

I believe I can fly...

As promised, pictures of Jack in his flying jacket

this toy looks interesting

oh oh...she's got the camera again

if I make a face, she might go away

just hanging around, playing it cool

I am trying to ignore her 

now for a close up

getting tired

So there you have it. The flying jacket. It means that I can sit him up without me having to support him. This way he can sit facing me and we can get better interaction.  He was trying really hard to get a hold of that toy and he managed it quite a few times, using both hands.

What a star!

To Edinburgh and back

It has been a busy week for us here in the Mckenzie house.

On Tuesday I made the 8 hour round trip to Edinburgh with Jack to see the Neurologist. My Dad came with me and thankfully he did most of the driving. Before we left, Jack had a session of Craniosacral Therapy at 9am with Joanna. He was very sleepy and so she was being quite gentle with him but I think he was kidding us on cos at one point, he had a wee smile to himself but we clocked it! Wee monkey.

Joanna and I were having a bit of a laugh as she was the one who had suggested I get a subscriber button but being the technophobe that she is, she still hadn't worked out how to do it! She was mortified that she still hadn't clicked on that button 6 months later, so she did it straight away after reading about herself in my Blogaversary post. She thinks she has managed it now. Tee hee hee, only time will tell.

Jack slept for the first two hours of our journey to Edinburgh. I sat in the back with him as he has been having quite a lot of seizures recently and I needed to activate his VNS with his magnet. I was also giving him water boluses through his peg enroute and setting up his feed pump for his lunch. Not easy to do in a moving car let me tell you!

We arrived in Edinburgh at 2.10pm and were waiting in the corridor when Jack took another seizure. The epilepsy nurse called us in at that point and we'd to navigate the corridor with Jack's arms flung wide, which is  really difficult when you are trying to get past other people and other children in wheelchairs and buggies. I could feel my stress levels rising. Hopefully in the new purpose built hospital the corridors will be much wider.

Sick kids hospital in Edinburgh  (source)

We had a lot to discuss but very quickly it was decided that we should up the dose of one of Jack's epilepsy medications. I was gutted because we had managed to reduce the meds by 6 mls a day but as she explained, Jack has grown quite significantly since she had last seen him and his weight had increased to so he was no longer on a strong enough dose for his height and weight. She also programmed his VNS to go off every 3 minutes for 30 seconds instead of every 5 which should help control the seizures too.

After our discussion in November, it was decided on this visit that they would take more blood from myself and Jack to have another look at his chromosomes to see if there was anything else going on. I saw this as quite a positive thing because the more you know, the better it is for managing treatment of your condition. Jack was a real trouper getting his blood taken whereas his mum absolutely hates hates hates needles and was starting to hyperventilate at the thought! You'd think having had chemo years ago it would have made me immune but no such luck. I am a total wimp! They gave me a form for Father of the Year to take to his doctor so that he can get his blood sent off too. He is supposedly due home next week so I asked his Dad to let him know that he needs to contact me.

pic from here

The other thing we talked about was Jack's epilepsy protocol.  At the moment, since Jack was taking so many seizures lasting over 10 minutes, it was decided by a different epilepsy nurse that no rescue meds should be given until the seizure lasted 10 minutes and then to give more rescue meds 10 minutes later and call an ambulance. This meant that we weren't calling the ambulance so often but then conversely it meant letting Jack seize for 20+ minutes which wasn't an ideal scenario either. Damn scary actually.

So we drew up another protocol whereby rescue meds are to be given after 5 minutes and if he is still seizing 5 minutes later then an ambulance has to be called but no other rescue meds to be given. This is a big improvement and I am really happy that the time has been reduced but I am also terrified.

Terrified because this will be similar to how it all was a few years ago. At one time we ended up calling an ambulance 3 times in one week! Once in hospital, we were often there, weeks at a time, away from home and I was torn between being there for Jack and still being there for Holly. My stress levels were so high and I felt like I was on a constant adrenaline rush and not in a good way I can assure you!

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The difference between now and then is that Holly is now 17 and if Jack is transferred to a hospital further away, then she is old enough to be left on her own if need be. Diz has already offered to come and stay with her if the need arises so I know that the two of them will get on just fine.

I wont get the new protocol for a few weeks yet so it is not in effect yet. Hopefully by that time Jack's new dose of meds will have kicked in and the VNS will be more effective too.

Then Wednesday night, I took Jack to see Holly in her show with the Out of Darkness Theatre Company. It was called The Dark Cabaret and was held in Buckie High School to highlight bullying, fitting in at school, peer pressure etc. It was really good, very well done and highly entertaining considering there were only 3 people on stage. I missed the first ten minutes of it because Jack had a seizure and needed changing so I was panicking that Holly would think that we hadn't come to see her but then she caught sight of us when Jack made a noise. I was able to give her a wee wave and I could relax then.

She had such a laugh doing this and she came home with a big fat cheque so that can't be bad for doing something that you absolutely love.

Blogaversary prize giveaway

Oh my god, what a crazy few days I have had, hence zero posts on this blog!

More on that later though as I am excited to let you know about my Blogaversary Giveaway.  I am giving away the prize of a box of Scottish goodies. I haven't decided what form it will take yet but I've already seen some things that I am going to include, like the wee guy below.

a wee highland cow - cute eh?  (source)

On top of that, my lovely daughter Holly has donated a unique pair of girls shoes that she has customised.  They are Diesel (US Size 13/UK size 11.5) as per the converter I consulted! They are so damn cute and they are up for grabs too.

If you want to be in with a chance to win either of these two prizes all you have to do is leave me a comment saying you want to be included in the prize draw, email me at lyndylou38@googlemail.com or leave a comment on Facebook.

That's it, easy peasy and I will do the draw at the end of the month. Good luck my little gigglers.

It's my anniversary!

A year ago today, I wrote my first post on this Blog. I actually set up the account on the 7th June but it took me 6 more days to pluck up the courage to write anything!

In the beginning my posts were short and without any pics cos I hadn't worked out how to do it but I soon learned through sheer trial and error.

After a few weeks I plucked up the courage to post it to Facebook and I got my first comments on the 16th July in response to something Holly had said.  There were only 2 but I was so so chuffed! It was another month before I got my next comments, mostly cos I wasn't continually posting to Facebook, just periodically because I was still unsure that people would be interested in what I had to say.

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I originally started this blog as a way to have a voice and to test the water to see if I could write. As a carer, you have so little help. Cuts are made to vital services without barely a thought, respite is cancelled at a moments notice, fighting for everything you need to help you care for someone takes up a huge chunk of your time, then there are the endless multi agency meetings, hospital appointments, school reviews and the list goes on.  Then there is the caring.

Saying that, there is so much more to me and my life than caring. So yeah, there have been many posts where I have vented my frustration but equally there have been some posts where I have laughed my ass off at something that has tickled my warped sense of humour. My darling daughter Holly was often the focus as she was just so damn funny!

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It amazed me when people started to Follow me and before long I was celebrating the fact that I had 10 followers. God I was so excited!!! You see, I am easy pleased. I now post on Facebook regularly and friends comment or stop me in the street to chat about it and I am always surprised that they have read it! Most of all, I am secretly delighted!  It was on the advice of Joanna, Jack's therapist that I added a subscriber button because she wanted to get it in her inbox but didn't want to open a Google account. A year on I have 95 subscribers and 90 Followers and that doesn't include the lovely people on Facebook who read it too.

You've no idea how much I appreciate you all.

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I have had the pleasure of meeting so many people on Blogger from all over the world. Many I wish I could meet in person cos I think it would be a total scream! I have been given awards, nominated for Blogger Awards and have even done a few guest posts on other people's Blogs. It has been so much fun.

To celebrate I have a Giveaway planned which I will tell you about tomorrow because I have to be at Jack's school in half an hour, to show them how to put on his flying jacket....a what you say? Yeah well suffice to say there will be no Peter Pan impersonations done by Jackyboy today! Pics on the flying jacket to follow.

So Happy Birthday to The Giggle Fest, one year old today.

Clown Doctors

Yesterday afternoon, Jack had a visit from the Clown Doctors.

We have met some of them before, usually in the hospital when they pop in to cheer up the kids. This time we were offered a home visit, arranged by the Children's Hospice Association Scotland.  Clown Doctors in the Community it''s called and they are keen to develop it. I have to give feedback too so that they can see if it is working or not.

I wasn't sure what to expect because during previous times, Jack has been unwell and although took an interest, he didn't have much energy to show his enthusiasm.

Dr Cheese called before hand to check that Jack was well and to ask how they would know if he was enjoying himself and how he would communicate with them. I recognised her voice (she is a Canadian) and I was sure that she was one of the Clown Doctors Jack and I had met before. She explained that they would arrive already made up in their costumes.

They arrived at our house at the same time as Jack and they were so excited. Dr Sprout and Dr Cheese introduced themselves to the three of us. You should have seen Holly's face! She'd not had the pleasure of the Clown Doctors before as she was usually in school when they visited him in hospital.

Dr Sprout after she'd fallen over

Dr Cheese wonder what she's doing!

Holly's reaction

Having a wee sing song

Jack's taking a good look at Dr Sprout

The Doctors getting a special hug from Jack

Dr Sprout having a nap whilst getting her cuddle

Never mind double trouble, I think it's triple trouble!

Dr Sprout on the swively chair

Dr Sprout stealing my shoe that Holly had decorated! 

At the end of the visit, Dr Cheese, Dr Jackyboy and Dr Sprout

There are videos too but Blogger doesn't seem to want to let me upload them but I will keep trying!

All I will say is, that this was the most fun I have had in an hour in a very long time. It was so much fun and they were such a scream! I just know that Jack enjoyed it because at times his eyes were big and wide, taking it all in and the times he raised his eyebrows at their antics, was priceless.

It's life Jim....

It's 2 years next month since Jack had his Vagus Nerve Stimulator fitted.

His seizures were quite bad at the time, 20+ a day. Within a few months of having it fitted and turned up, I noticed how the seizures were beginning to shorten. I tried not to get excited about it but secretly I was. Within the year, I was able to, with the guidance of the Neurologist, reduce some of Jack's epilepsy meds.  Even with the reduction in meds, the seizures not only were shortening but they were becoming less and nearly two years on, Jack only has around 4 - 10 seizures a day. Big improvement.

Holly and Jack in his inflatable wheel

Up until last November, it was my hope that with the reduction in seizures, Jack would, once again be able to learn new skills but when it was explained to me that he also had another problem on Chromosome 15, that hope kinda flew out the window. In my heart I knew there had to be more to it.

Jack and Holly in Disneyland Paris

Jack wearing his Captain Jack Sparrow wig

Jack and I on the Casey Junior ride

I have spent the last 7 months coming to terms with this and it has been pretty damn hard. I have made baby steps and have started to sell off toys that I know he will never play with, taken down his photo board with his choosing cards on, rearranged his bedroom to make way for new equipment, contacted Occupational Therapy re a new shower room, new bed and other equipment.

I am getting more sleep at night, yet I feel emotionally exhausted. My emotions are all over the place. Anyone who has a disabled child will tell you that it is a roller coaster ride of emotions and you endlessly grieve for the loss of every little thing. I am a glass half full kind of person so I always try and see the positives in everything but there are days when I really struggle.

Jack 2 years ago in school, wearing his protective cap when he could  sit up

Jack playing with the tambourine

There are days when I feel like I am walking through treacle and then other days I bound out of bed (a dangerous occupation for a girl with big boobs!). There are days when I don't feel like I do enough for him and other days when I know I have. In the end, I just muddle through, like any parent does cos that's all you can do. I wish many things. For instance, I wish his father would take Jack to his house when he comes home and spend some quality time with him, I wish I had more time and energy to play with him, I wish I didn't have to fight for every little thing that he needs.

Unfortunately, fighting for everything he needs comes with the territory and that's the thing that takes the most out of me. Looking after Jack is the easiest bit!

I am not giving up on him, I am just accepting and that frees me, takes the pressure off. I will always try to coax a smile from him, laugh when he raises his eyebrows at something I have said, chat away to him whether he likes it or not and sing to him bits of songs that pop into my head, annoy him by tickling him with lots of tactile toys, encouraging him to stroke the soft fur on our two dogs and lots of other things.

2 years ago in school, playing interactive music

I will continue to fill the house with music, love and laughter and if that is all I can give him, then to my mind it is more than enough.