wow

Two years since last posting! do I start this again or not?? Answers on a postcard! :o) L. x

blog holiday

yes I have had what i can describe as a blog holiday. originally because I wanted my next post to be about the wonderful day Mikey had with TMBF when they came from all over the country just to make him smile and smile he did... again, if any are reading, thankyou so much.. that day will live on forever in my heart.
then after that wonderful day life became a whirlwind, not a roller coaster as they are supposed to be exhilarating with a little scariness and then stop for a rest before the next adventure... our life has not stopped with a rest before the next adventure and there has been more of the scariness than exhilaration.
so for that reason i took a blog holiday, mainly due to lack of time but perhaps also due to not wanting to show how strong I am not. I set out with this blog to give my readers a realistic view of how life is and can be yet at the toughest of times I found myself crawling back in my shell and hiding my feelings deep inside...where they are safe therefore avoiding the sympathy vote and awkwardness that can follow when things are "different"
So a quick catch up..
Mikey has deteriorated somewhat over this summer. He had a PEG fitted which though expected to be the biggest problem has been a breeze... a couple of infections and a few tears and confusions from himself that comes with not being able to eat food that he so loves but all in all it has been a success and a big relief that he is getting the nutrients he needs safely.
Seizures are a huge problem, apparently they are harder to get under control as they are due to the neurodegenerative condition as opposed to epilepsy... either way they are yuk and they rip a small piece of my heart out each time as I cannot take them away from him..
His oxygen requirement has gone up though since leaving school (another story!) he is able to rest when he needs to so daytime requirement is not as bad as it was at one point. Hand on heart I thought he was slipping away from me and I wondered if Christmas was something we would be celebrating..
but Mikey has fought for what Mikey believes in and is enjoying the lights and festivities that go with Christmas. There is a hell of alot going on for him but as those who know us will know my saying.. "plodding on"...

I will attempt to get back into the blogging world as it is important for me to share our life in a true light, it's just sometimes it is easier to hide and bury my head deep in the sand.

but i do want to say thankyou to my friends who have been absolute rocks over the summer.. I don't think I would have got through the last four or so months without you. xx

Mikey’s dream is only 4 sleeps away!!

Well, you may remember a recent blog post (view here) about Mikey’s love of motorbikes and the kindness of then strangers… well this Sunday these amazing people are popping on their bikes and riding hundreds of miles just to make my little boy smile. I so wish I could tell him now what is going to happen so he could share in my excitement now but there is not a way of making him understand so it will definitely be a huge surprise for him. There are around 30 bikes coming from all corners of our country and they tell me off for saying thank you but I can say it on here should any of them be reading THANKYOU from the bottom of my heart. It really is going to be a very special day for Mikey and in turn that is special for me.. so everyone else.. vibes, prayers or whatever for a safe ride for them all and that this sunshine sticks around too. ;-)

Friday the 13th

OK, I haven't quite lost the plot, I am aware that it is the 12th today but this time last year it was Friday the 13th and I am having a “this time last year” day.

I never used to be superstitious but this time last year I did begin to wonder if there was anything in it! It was Friday the 13th and we lived at number 13. Mikey was very poorly with a chest infection so the day started off as a normal day looking after little man and making him as comfortable as possible with a lot of fights with keeping his oxygen on him.

Then all hell broke loose at lunch time. A little background: we were having our bathroom changed into a wet room. as part of that asbestos was found. to cut a long story short this asbestos was disturbed in a bad way the Tuesday before this day and on this day (the 13th) a company was coming to do air monitoring tests, bearing in mind that myself and my sick child had been left in that property since the disturbance happened.

So two (rather cute as I remember lol) fellas turned up with equipment and a lab in their van which I was very impressed with being a science geek. This followed to events that will stay with me forever. At 1.45pm I was told that we had to leave immediately and could take nothing with us. I won’t go into details about the heartache that followed in trying to find somewhere suitable balanced with worrying about M’s present health condition but in the end we had to go 150 miles away to stay with friends, all we had was the clothes we were wearing, an 02 bottle for Mikey, his medications and a packet of nappies oh and my bank card and I sneaked my mobile and charger out in my pocket. I can’t begin to explain that terrible journey. I needed to get there as quick as possible but keep Mikey oxygenated at the same time. The poor child didn't even have any shoes on…we were proper nomads!! I had to push my feelings aside of losing everything we had in that property and concentrate on getting to where we were going to.

The days that followed were extremely hard and it was months before we were relocated to where we are now. I am forever grateful to the love and concern of all who helped us since this incident…with the practical things and the emotional turmoil. Those responsible for this mess are having to take responsibility for it which is why this all is a bit vague (legalities!) but nothing will ever make up for this time last year and the anxiety and issues in the days/months that followed and the concerns associated with asbestos exposure which we now have.

But… refocus.. need to concentrate on the here and now but is just a snippet into today's thoughts and thank goodness it is Friday the 12th today and not Friday the 13th!!

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 :-)

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