Saturday, 24 January 2009

Behind the mask

.... is a little boy fighting a horrible infection. I had hoped for happier news to tell you but this infection has hit him hard. There are signs of improvement and the glimmer of smiles today. The reason for the photo is you may see the mask is HUGE! Mikey is needing a high level of oxygen input to keep his oxygen levels above 90% and he has fought his usual canulae and paediatric masks so while on a hunt for a solution I found the said mask. RESULT! More toleration and a better oxygenated Mikey and happier mummy! After a better night during the night last night I had hoped he had turned the corner this morning. When I awoke it was all quiet and I got the familiar panic feeling as I went in his room not knowing what I may find. I know I am not alone in this feeling and used to worry I was morbid in my thinkings but a recent discussion revealed I am not alone in this fear, some may understand and some may not. I won't dwell on it. Mikey decided to scare me some more by coughing up some blood... that was a new experience for us both but in different ways. So's not to go into details all i can say is though Mikey is still very poorly, he is fighting it and tomorrow will bring a new day with hopefully more improvements in his health. Thankyou to the lovely messages we have recieved and thankyou for allowing me to blog this, I think I needed to get it off my chest (for want of a better phrase!)...always easier to write (or type) than talk.

Keep getting well my lil dude. You are my world. Loads of Love, Mummy. xxxxxxxxx

Thursday, 22 January 2009

life is NOT fair

my little man is unwell again. Chest infection perhaps caused by aspiration as many choking episodes. All scary. It stinks! I need a magic wand to make him better. I cannot post much for fear of making my readers as unhappy as i feel but will update at the weekend with hopefully some happier news.
my thoughts are with his sicky twin tomorrow.. why our boys? why any of our kids? Hugs for all the special kids out there and especially the two M's at the mo.
Sorry I can't type more today. x

Sunday, 11 January 2009

He's found the buttons!!!

I returned to the living room after changing Mikeys bedding to find a quiet contented little dude and here's why.......


Mikey has found the buttons on the Sky+ box... Great for encouraging his cause and effect but not great for my sanity... trying to "nip in bud" before a new obsession emerges......

THought I would share as the sequence of pictures is cute even if the reality of it isn't!!

Catchup and highlights...

Ok, here goes, I will attempt to include snippets from the holiday period while attempting to post pictures along the way instead of just at the top.

And so christmas begins...
THe christmas celebrations started with going to a party with some very special friends from a support group I belong to specialkidsintheuk Mikey and I made our way to Preston and had a lovely few hours socialising and joining in the christmas fun. Mikey still has not the idea of pass the parcel and much prefers to "throw" the parcel, he wasn't impressed by santa and wouldn't go anywhere near him and at last count managed to make four children cry though not intentionally, where else could I take him where parents are so understanding of Mikey without knowing him properly?

Christmas day

A lovely day, my favourite part is my escape to the kitchen to cook a meal for the people I love. Of course, before that there is the inevitable present opening session. This should be the best part, watching the sheer glee on childrens faces as they see what suprises they have, perhaps the following picture is not the best example of this?
Present opening can be tedious with Mikey, he doesnt cope too well with the obvious differences in the day, his concentration goes and he just wants to escape. His favourite presents... not the Elmo live I was so excited to get for him but:
Squidgy things that are a quid from asda
and a close second was a lovely battery operated fibre optic thingy which the hospice santa gave him:

All in all a lovely day had by all.

Home for a few days..
We came home for a cuople of days mainly to attend a very special young ladies 18th birthday party. WHat a fantastic night we had. Mikey was fluctuating with his oxygen saturations but managed the whole night on the go to arrive home by midnight (was a tired grumpy boy next day though but well worth it!) We danced, Mikey kept trying to escape to the food part... my fear was not him emptying the tables by putting the food into his tummy, more him emptying the tables by grabbing the table cloths LOL But we really really enjoyed ourselves and though not christmas related, this was the best night of the christmas period for me and much needed.
Photobucket Photobucket

Another little funny (dont show any physios!) was Mikey decided if he propped his foot up on his chair he could eat it (or attempt to!)...hows that for a child with supposed balance and coordination problems? (though guess it is a good example of his hypermobility!)
Photobucket Photobucket
and so we are then heading back to the north west for new year, a parting present bought by the postie... ammended proposed statement, but wont go into that just now!!!

New Year
Mikey didnt stay awake to see the new year in but celebrated new year in his own way a few days later. He appeared in the room looking like this:
Sheepish?? OK, closer inspection.....
mmm...chocolate...where has he found that????
the evidence:

:-) oh it was so nice to see!!! (Just grateful he hadnt choked in his naughtiness as previous few days he had been choking on anything with a thicker consistency than custard... now I get it.. he wanted some jaffa cakes!!!!)

and on that happy little tale I will say bye for now and happy 2009 once again (I am resisting the urge to post of our bumps back to reality along the way and now we are back home, but they will wait!)

Friday, 2 January 2009

Happy New Year!!

A small gap in my blogging adventure, mainly due to my newly aquired dongle not being too cooperative so while away for the christmas period I am limited in cyberspace, however will be back to normal next week, but wanted to battle my dongle to wish everyone a happy new year...