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