Bloody cappuccino…….

So, day 5 of our current nightmare.

Daisy was given so much medication last night I’m amazed she woke up! 4am was her lie-in over with and I was relieved that I’d gone to bed before 8pm. It’s hard to believe that I’m actually happy with her waking so early but after three days of being up at 1am, 4am felt like half the day had gone.

Today has been mixed. She was beyond manic for the first three hours, jumping on bed, sofa……..not unusual you might think but Daisy is a 98kg 16 year old! She was laughing hysterically at nothing, punching her head, throat and nose and running, stripping, throwing anything she could get her hands on and continually ripping any nappy I dared to put on her. This did cause me a big problem as she took the opportunity to poop on her clean bedding and then run around upstairs, I’ll spare the details.

Bath.

After the bath she calmed for a bit until there was a knock on the door. A guy came to do a report on our kitchen, long story. Out came her horns and I have to say I did chuckle to myself when she ‘charged’ full pace at this poor 6’2″ 20 stone man, he looked terrified! He was a great source of interest for Daisy and I’m sure he made up all the measurements as he was gone in a flash. Flash……….yes she did!

As I’m slowly going mad with my own company I thought I’d take her for a drive, go for a walk and get a Starbucks. Mistake. Queuing at the drive thru she suddenly took a turn for the worse. She went bluey grey, started trembling and then continuously punched her nose incredibly hard, it was like a bloodbath. I was trying to clean her nose and calm her shaking just as my cappuccino appeared through the window. I reached over with blood on my hands, apologizing I asked for a serviette and just grinned at the poor guy, who knows what he thought, probably took my registration and has reported me as we speak.

I abandoned all hopes of wheeling her round the barrage and drove home.

She has now settled again and thanks to good old MacDonalds has eaten for the first time in five days which means I can also give her ibuprofen for what must be a very sore snout.

I have no idea how long this phase will last, it will end………probably just in time for her dads return on Saturday!

Easy like Sunday Morning.

Seizure day, tick.

Post-ictal day, tick.

Lucid, lethargic day, tick.

Post-ictal psychosis day, ARGHHHHHHHHHHH!

Today, may possibly go down in history as the worst day, EVER, and it’s only 4.30am. Carers have cancelled on me so bring on the day.

Daisy woke at 1.35am. I thought I had a plan. Medication to sedate her was by the side of the bed in preparation for her awakening. Jumping on her to syringe it in I thought I’d won. I popped her tv on (Postman Pat 2 hour dvd) and lay her down, snuggling her into her pillow. The sound was so low only a dog would hear it. Lights off I went back to bed so that she wouldn’t be distracted by me snoring, if only! Within a minute the bed rail was rattling. Within two she was attempting to climb over said bed rail. Within three THUMP, she had.

I could tell by looking at her huge pupils that something wasn’t right, I’ve seen it many times, my heart sank. Great, what else can be thrown at me. She stripped, ripped her nightie, punched her nose that was already congealed with dried blood, threw her drink cup that I’d offered her, clapped manically all in the space of a few minutes; all this whilst laughing in a scary way.

Post-ictal psychosis shouldn’t occur in children, trust Daisy to be an exception. There is little research into it and probably none regarding mentally handicapped children but believe me, it’s horrendous to deal with. I keep a bottle of haloperidol for such occasions and have administered a low dose, but so far it’s not doing its job. My only fears today are that 1, she really hurts herself by punching her nose so hard or 2, I really hurt myself by jumping off a cliff!

Easy like Sunday Morning!

I wanna be weak…….

You can always tell I’ve been awake for hours when I start wittering on about inane and uninteresting things……..today is one of those days sorry. Best stop reading now.

Yesterday wasn’t good. Daisy wasn’t on the same planet as the rest of us, she was locked into her silent world with little movement (apart from her bowels ……. many times!). Sleep was alien to her the night before so I had only managed three hours sleep in total which doesn’t do my reflection much good, I looked horrific and any small child would have run screaming from me.

We started the day half a day before the rest of the planet and by 5 am bedding was changed, washed and drying, Daisy was zoned out on the sofa just staring at nothing, but not letting go of my hand……arghhhh, and I was watching a catch up of Trauma (I have to say, 3 hours of my life were wasted with that, shite ending). The day didn’t really improve. Daisy just lay like a little (cough) dead thing, not eating, drinking or interacting and to make it even worse bloody Davina McCall had replaced Holly on ‘This Morning’, shoot me now.

By 3pm I thought it best I try to bath Daisy. I prized my hand from hers and ran her a lovely bubbly bath. It took about 45 minutes of coaxing to get her to follow me and she was walking like she was on the moon, but we got to the bath and it was much more pleasant sitting next to her for the following hours.

Wine time, I mean Bedtime…….whoop whoop!

I think I fell asleep about 8.30pm, not sure, but 1am was the next time I definitely remember seeing on the clock. Surely she will go back to sleep? In the following hour I administered a sedative, to Daisy not me, changed her nappy, put tv on, turned it off, screamed, swore, screamed louder, swore more……. in fact, I half expected the police to break down my door, surely someone heard me scream? Course they didn’t, we are alone. They say sleep is for the weak, I wanna be weak……….

So today, let’s see, she’s a bit brighter looking, she’s sitting rather than lying down, she’s holding her iPad to her ear listening to Fireflies on repeat, she’s not eaten or drunk anything but it’s early so I’m hopeful. She is still silent but giving me the odd smile. Oh, and I haven’t smothered her! I do wonder if her insides are dissolving though as there can’t possibly be any more nappies to change, but they keep on coming.

HAPPY SATURDAY

She sleeps………

I was woken at 4.45am by the awful sounds of Daisy suffering a seizure. I bolted out of bed and she was face down into her pillow, blue lips, gulping for air. I dropped the bed rail, straddled her and pushed the pillow deep into the bed so that I could remove the dummy and let her get some air. It lasted about three minutes but felt much longer. I lay next to her and fell back to sleep.

5.50am it started all over again. This time the seizure seemed much longer but probably wasn’t however the shaking and groaning was very alarming. I held her hand and watched her.

9.05am I decide to administer emergency medication to halt this next seizure. She sleeps.

10.30am, you get the picture……….

We are now on the fifth seizure and each one has increased in intensity. It’s 2.35pm and Daisy hasn’t woken yet. I’ve tried to rouse her by talking and singing (that’s enough to rouse anyone!) but she doesn’t want to join the world today.

I’m hopeful there will be no more, I can only give one more dose of emergency medication so I am praying to a God I don’t believe in that she will wake soon and ask for yum yum. I fear it’s going to be a long day and night but I know she will recover, she always does, this time it might take a little longer but she will soon be driving me to distraction once again, of that I can be sure.

So, I’m sitting next to her on her bed, with a hot water bottle on the base of my spine (a back ache as a result of trying to change her nappy) ordering clothes I don’t need and reading stories regarding epilepsy that I shouldn’t be reading. Life was never meant to be like this. Today it sucks.

It’s been a long time………

It’s been a while I know but you really would not have wanted to read what I had to say for the last few months! It’s been very difficult, emotional, tiresome but hey, shit happens and now we must get on with our lives.

Daisy is amazing. Don’t get me wrong, she has not sprouted angel wings in the last couple of months but what she has done is shown what an incredibly strong character she is. The incomprehensible pain she suffered last year is forgotten in her world. She has forgiven me, I can see it in her goofy (bad choice of phrase) smile. Every day I’m reminded as I stare at her lost looks and I feel so sad but what’s the point, I can’t magic her teeth back, they have gone and she didn’t even have a chance to pop them under her pillow for a pound off the tooth fairy (not sure what the going rate per tooth is nowadays but if it’s more than a pound per tooth, wow, it’s just as well that b****h of a dentist didn’t give them back to me!) Damn, I knew my bitterness would slip in.

So, what has changed? Well, Daisy has lost quite a bit of weight but I guess if you have 21 teeth butchered from your mouth and don’t eat for nearly a month because the pain is so intense weight loss is inevitable. Her seizure pattern has increased, oh and she looks like a little gummy old lady! Unfortunately her sleeping pattern hasn’t changed and she still insists on torturing me with rattling her bed rail at 1, 2, 3am, in fact I have to say that on certain nights it’s actually been her lack of teeth that has saved her life for if she hadn’t given me a toothless grin I swear she would now be in the great big dentist chair in the sky!

Does Daisy care about looks? Does she heck. This blissfully unaware teenager just gets on with being Daisy but me, being the selfish individual that I am, well I’m devastated and I doubt I’ll ever get over what has happened to her. Everyone tells me you can’t tell until she smiles but they lie to be kind and many would argue this, but I’m not daft!

So, here we are, 2018. Another year and who knows what will be thrown at us? Who knows what will test my patience? What I do know is that whatever happens Daisy will remain un-phased. Me, assuming my liver holds out, will do my best to care for this incredible girl who on alternate days I want to love and then murder. She tests every part of me but ultimately she needs me so I will fight for her, what has happened isn’t over but so far as my tedious posts go it is and no more will be said……….famous last words!

Said it before, I hate Mondays.

I’ve invented a new word. It’s only ever going to be relevant to a handful of people, well to be precise just me (and my husband, very, very occasionally).  Drum roll please……….the word is ‘Roo-lag’. I think it should be defined as ‘a physiological condition that affects your ability to function in a pleasant, calm and tolerable manner due to constant sleep disturbance and ridiculously early mornings’. Symptoms include irritability, excessive eating (due to being awake for 20 hours out of of 24), ugly black circles around eyes, self loathing and complete child loathing. Treatment, none found as yet. Clinical trials ongoing but a possible solution could be in the form of a bullet right between the eyes.

I shouldn’t be nasty, it’s not Daisy’s fault but it’s so difficult to be nice when tiredness envelopes every part of me. I think this episode of sleep disturbance is due to a tooth problem. I may be wrong but Daisy has not been eating well for quite a few weeks (hasn’t lost any weight though). She is booked in for an ‘urgent’ tooth examination under GA but that ‘urgent’ request was three weeks ago and as yet there is no sign of a date. Daisy isn’t like any other child. She can’t go to a dentist and just open her mouth for a peek at her pearly whites, no, my bloody child needs a GA for a simple procedure. This will be her third one for tooth examination, it’s horrendous but has to be done. She can’t indicate pain, she can’t tell me if her mouth is throbbing or her throat is hurting. I have to guess by process of elimination. It’s all guess work. Sometimes I get it wrong, mostly I get it right.

She was up at 4.30 today. Breakfast has been served since 5.30. Normally it would be demolished in minutes but today it is sat there, laced with some medication. It remains untouched. Quavers will be offered soon, I’m holding out but inevitably they will be placed on the platter in the hope her appetite may trigger. She doesn’t appear unwell, she’s giving me nasty glares and I’ve had some high pitched screaming from her so I’m now going to attempt to dress her and medicate her, I have a feeling this isn’t going to be easy this morning.

I have to go, she’s just kicked her banquet on the floor. She will be lucky to make it to school……….alive, arghhhhhh! 

Happy Days

We have had a few good days this week which is a rarity I know. Daisy had a positive experience at Touch Trust on Saturday (a sensory session that focuses on touch and positive feelings). I was apprehensive before the session as not only did I think it would be a complete waste of money but also Daisy had proper ‘kicked off’ in Costa Coffee en route, targeting the only two couples quietly enjoying their drinks, so we (Harvey was my second pair of hands) were convinced she would continue with her destructive, angry mood – we were wrong. She sat in the dedicated Touch Trust room which had a hippyish almost Ottoman tent vibe and waited patiently. Daisy has a strange obsession with pipes in ceilings, odd I know, so immediately spotted them and happily for the first ten minutes pointed and pointed and pointed whilst we had to keep repeating “ooh, yeh”.

The session began. Sensibly I chose to sit on the opposite side of the room to Daisy, Harvey drew the short straw and was perched next to her on a sofa. It began with an introduction and we each in turn had to clap each other as a welcome. There were six of us in total. Daisy, me, Harvey, the therapist a young man and his carer. Daisy loves to clap and doesn’t understand ‘taking turns’ so happily clapped……a lot!

A bit of weirdness followed, we had to remove negativity from our bodies by almost brushing it out with our hands…Harvey had to remove Daisy’s (she would need a heck of a lot of ‘brushing’ but he went along with it). He held his hands close to her skin and ‘whooshed’ all negativity away, I couldn’t look at him, I’m so immature at times. Daisy sat quite happily as all her demons were exiting her body, I smirked at Harvey. Harvey was the sensible adult and ignored me.

Next – choose a musical instrument. The young man chose some cymbals, noisy cymbals, but he was loving the clanking they made, we clapped, a lot.  Daisy’s turn. She doesn’t understand the concept of choosing or playing an instrument. Harvey chose a shaky bell thing, he shook it for Daisy, we clapped, a lot.

Next Elton John – not in person, now that would’ve been something, no, a rendition of ‘I remember when rock was young’. Daisy didn’t get up to dance but was smiling and jigging on the sofa. Thinking I could just sit and enjoy the show, I was then encouraged to dance to try to entice Daisy to her feet, I threw some shapes on my imaginary dance floor but Daisy remained on the sofa, clapping. Harvey’s turn to smirk.

The session ended with the lights dimming and some soft music. Daisy was still clapping whilst the therapist seemed to be meditating, I was grinning, Daisy was now ‘yum yumming’, loudly! More clapping. The hour ended and both myself and Harvey felt that it was money well spent. Strange, but a success. If Daisy can remain in a room without escaping, pushing, pinching, hitting or grabbing someone for a whole hour it’s a success. We will return.

On Sunday Daisy behaved herself whilst out with two carers for a few hours. The previous week she was returned after less than an hour because she had hit a pregnant woman who was having a nice stroll with her family. I found myself apologizing for her behavior to the carers as I always do. The lesson to be learnt is to think of possible incidents before they happen then maybe they won’t happen.

Sunday afternoon, the car. I took my usual route which has a benefit of  Starbucks drive through so it’s a win win situation as Daisy will happily moo, quack and grunt at all forms of wildlife on her car journeys and I get my triple shot caffeine hit.

Daisy is now at Ty Hafan (children’s hospice) for respite for a few days. The reports so far are promising, she’s being a diva so must be enjoying herself. My anxiety due to guilt has waned. My house is clean, washing is up to date, all internet purchases are being delivered to the Esso garage so hubby won’t see them and so here I am catching up with all the reality sh*t tv that I love, Love Island, Ex on the beach, Big Brother……..drinking plenty of wine, eating too much chocolate and basically doing very little. I know this period of my type of heaven won’t last too long but for now I’m enjoying not having to do much, hubby is home tomorrow so my only job before I go to bed is to bury all the empty wine bottles in the bottom of the recycling bin.

Glass is empty, time for a top up.