Christmas Wishes xxx

Hiya,

It has been a strange and eventful year for us as you all know. I can't quite believe how quickly this year has flown by. When you look back to the beginning of this blog and see all that has happened, it's quite unbelievable how we've packed it all in. We've certainly had plenty of tough times but plenty of smiles along the way.

I would like to take this opportunity to say a big thank you to all those involved in any way with Patrick's care. Without the support from special people like Fiona (Patrick's Neurologist) and Janet (our support worker) and the many others that help us along the way, we really wouldn't be able to cope.

I would also like to give a massive thank you to my Mum, Jackie who has been a huge support to us all from the start. Mum, I love you loads, thanks a million.

2007 has been a crazy year and 2008 looks set to be just as busy, who knows what lies ahead. All we can say is that we will continue to stay strong and keep smiling no matter what.

As always we will continue to up date you as and when we have any news, we get Patrick's latest blood results on 3rd January so look out for info soon after. Today Patrick is stable, his seizures aren't too bad although it looks like he is having 'facial' seizures again since we got him off the carbemazepine. We will speak to Fiona when we can and try and get these under control again.

Isaac had a fab 5th birthday yesterday, he has been an absolute star throughout the year and is really looking forward to Christmas.

So, with all that said, have a fabulous Christmas and a wonderful new year!

Welcome to Holland

Hiya,

Found this on the internet and thought it summed it all up pretty well...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Poorly Boys

Hiya,

I am fed up this week! Both Patrick and Isaac have been really poorly for the last couple of weeks. Isaac has missed loads of school, first with a tummy bug and now he has a stinking cold with a killer cough that at it's worst makes him vomit, poor thing.
Patrick is suffering with the same illness, he's had a tummy bug for over a week now and has also got a really bad cold and he also has some kind of eye infection as well! He's really feeling sorry for himself as his seizures have been quite bad again over the last week. I guess as he has diarrhea he's not able to absorb his meds properly. We're a bit worried really but have been in touch with someone at Southampton who said just to keep a close eye on him and use the medazalam if we need to (emergency anti-convulsant). If his tummy bug doesn't clear up soon we may have to consider taking him into hospital so they can give him his meds another way.
We're hoping to send Isaac back in to school tomorrow as he has his nativity on Thursday and he's missed loads of rehearsals already. He also has his birthday party to look forward to on Saturday so hopefully he'll be feeling much better by then.

Anyway, we're generally enjoying the festive season and have all our decs up and got the Christmas shopping sorted.
Hope everyone else is fine and not struck down with the lurgy like we are!

Merry Christmas, Lots of Love, Gemma xxx

Here is a special clip of our clever little boy feeding himself for the very first time. This is a major achievement for him as he usually cannot hold anything or make coordinated movements so we were both in tears and very proud. He's a little bit shaky and unfortunately took too big a bite and threw up but we can work on portion control another day!