The seizure monster is evil evil evil

What a day!!

Last Night I spoke with the epilepsy nurse and was so pleased to tell her the recent increase in M’s anti epileptic meds had worked. Boy did the seizure monster let us know the opposite today. On arrival at school Mikey had a biggy.. not tonic clonic… but floppy, drooling, eyes twitchy/gone, unresponsive. Hence ambulance was called and we spent the day in the hospital. They wanted to keep us but I made it plain that home was where we wanted to be and where M would settle best so home we were allowed. Seizures really scare the hell out of me. Perhaps three years ago as now they were unthought of of with M but the last two years they have definitely let us know they are unfortunately a part of his life and more recently they are evolving into different types and prolonged. I am awaiting arrival of a epilepsy monitor which will go under his mattress and alert me in the night to prolonged movement, peace of mind so I can get a couple of hours sleep knowing i will definitely be awoken in the event of a seizure. But now he has had this non convulsing “silent” seizure which took some shaking off I am again petrified. It is gone midnight as I type. M is fast asleep, I should be too so to be strong for whatever tomorrow brings or sleeping while i can before he wakes up thinking it is morning.. the bottom line is I daren't. I am sat in his room with my laptop. I have my sleeping bag ready in here to go to sleep close to him… but bringing myself to close my eyes is far from my plans.

Seizures are dangerous.. longer than 30 mins is classed as status and whether convulsing or not is dangerous. SUDEP is a very frightening concept. I don’t know how to deal with the whole thing. I will never get used to them. While they occur, instinct kicks in and you deal with it as you have to, its after when the what ifs and such kick in and the intense sadness at watching my boy go through all this.. the feeling of not being able to control what is happening to the person who means the most to you is immense and despairingly frustrating and upsetting to put it mildly.

A very good friend was on the news today talking about her beautiful family and the challenges they face. Some words she said have stuck in my mind “why waste time today worrying about tomorrow” I love the phrase, I just have to grasp it with both hands.

Touched by the kindness of strangers..

I'm guessing some of you are wondering why on the hottest day of the year I have posted a picture of Mikey in his motorbike jacket. Mikey loves motorbikes..admittedly he prefers them moving to not, he spots them a mile off in traffic...oh the giggles and we frequently go to a woods near us so he can see them come and go.. hours we watch so he can smile and enjoy. Well just over a week ago I posted on a motorbike forum to ask if there were any ride outs near here so we could come and watch. I explained a little about Mikey and was over the moon when I got responses, this has escalated over the last week to an invite to their rally, ride outs and now they are arranging a ride out just for Mikey possible with him being part of it (obviously in our car) and raising money for his hospice too. One member has even bought him a basil brush and the forum are getting him one of their fleeces for his birthday, separate from that a member is arranging a ride out from a local group and the messages I have received have resorted me to tears, tears of happiness and to be honest, completely overwhelmed at the care and kindness of complete strangers. I really needed this lift after a tough few weeks, so if they are reading this thank you all at TMBF for everything, as you know I cant put into words how much I want to thank you, my little boy is going to be buzzing. You are truly amazing people with hearts of gold. Lori and Mikey, xx

lots of photos of mikeys smile...enjoy :-)

Make a Smilebox slideshow

Something nice..

alot going on after a rollercoaster of a week which i will post about in due course as i need to (and when I am less fragile!) but something happy and huge to me...
Mikey came home from school on friday with "headteachers award, junior swimmer of the week" came at just the right time to cheer me up and v proud mummy. Not sure how he/school achieve anything in the pool as when I take him swimming he clings onto me like a orangutan with eight legs :) proud happy mummy though. :) Well done Mikey dude. xxxxx

The London Marathon

....was this morning. Every year I watch and in particular since completing it in 2003 I feel a certain warmth and buzz and envy of those on the streets. I have vowed to take part in it again before i am forty..that gives me nine years.. I have four more years of rejections before I am guaranteed a place so I should achieve my aim. Below are pics of my attempt first time round..what a day and what an atmosphere. It is a killer, no doubt but boy is it so so so worth it. I would hope to do better next time, I have lost a lot of the post baby chunk you can see in my pic below (disguised by my Minnie mouse costume :-)) but serious training would be needed first, not a bad thing though as is the only thing that would make me give up smoking again... that or being pregnant and the latter would be a definite no no!!! Last time I raised alot of money for scope but this time I would raise money for more local charities which have had a huge impact on Mikey's life, just a little way of giving something back for the support they provide. That is why I need a ballot place.. but one years rejection and four to go, but maybe this years application will be a lucky one and maybe not...
Here's a couple of pics...excuse the white flash marks... all proudly arranged in a posh frame so photos of photos ;-)

It's not abandoned!

Am aware that my blog is looking a little vacant, it isn't abandoned, am being a good girl and in between Mikey's care needs am studying every spare second as have my final year exams in a few weeks. I have pictures to add but when I take a break I find myself staring at some useless programme on TV or walking around in circles looking for a corner to hide in. :-)
A very quick update though, Mikey's new feeding regime though hard work (more in the preparation) touch wood is working well. He enjoyed his Easter holidays as did I and I didn't want him to go back to school, mainly for my own selfishness of wanting more fun times with him but also in the back of my mind I knew his return to school meant I had to study study study! Got the appointment through today to see the surgeon in five weeks. Have definitely come round to the idea now and look forward to how it will help Mikey. I refuse to think about the issues around the anesthesia just now, just focusing on a healthy choke free time ahead for my special boy and as always taking one day at a time and concentrating on Mikey's ever present smiles. :-)

Decision made..getting used to it

At an appointment yesterday the decision for Mikey to have a PEG (gastrostomy) was decided. This follows alot of choking incidents and one last week which was extremely scary.. for this reason my head and heart is in it but the idea is taking some getting used to. It has been mentioned several times over the last few months but I have been holding out for hope of a alternative solution. There is none. I am focusing on the positives pointed out by friends who's children have had this done; namely no more sitting on the child to give yucky medicines, no more worrying if had enough fluid intake or food/nutrient intake, dependent on child it all goes down the tube, but the biggie for me is the reassurance of Mikey being able to enjoy bits of food rather than knowing he has to eat but being petrified he is going to choke on anyone of the mouthfuls. Due to so many episodes, it could be his bad winter of chest infections could be mainly due to aspiration. This is all to scary to not go ahead with the procedure. I have to allow it for Mikey's quality of life to be optimum. I am confident that once done it will be one of the best things for him but it's going to be a rocky road getting to that point, but as i always say, Mikey keeps smiling so I have to too. I am so lucky to have friends including the doctors secretary and Mikey's nurse who have all been a fantastic support in the last twenty four hours. I am not focusing on what this means in the big picture of Mikeys health but looking at it as a piece in the jigsaw that will ease some of the problems he is having to deal with.

Aside from the above we have been enjoying the sunny weather (despite a puncture in the wheelchair) Have pics but need to upload them yet, but will hopefully this side of Easter... but don't count your chickens... ha ha. :-)