Saturday, 17 September 2011

Starting School

The time has come for Qasim to start going to school. We have home educated him so far, due to there not being any suitable schools in our locality (thanks for that government cut backs).
But eventually we have got him into a mainstream school with two aides, a nice power chair for his own independance and safety, and enough written instuctions on "What To Do In Case Of Fracture" to sink a ship!  I'm sure it's not just me who has ever been a little on the over cautious side when sending their OI'er into school - well that's what I'm telling myself anyway!
So, off we go to school, me more nervous than Qasim to be fair. And where are the tears of don't leave me mum? I don't know either. - I'm still waiting for them to appear.
I have still been on site in case of emergency and while his aides get used to handling him, and he has only been in for two hours max at a time until he gets used to it - but no seperation anxiety - really??
Ah well, maybe he just can't wait to get away from me!
But what ever the reason, he is absolutely loving his time in school.
Maybe when he is there for a whole day, he may start to miss me - just a little would be nice........

Thursday, 4 August 2011

So, we have had a bit of a break, and not been here for a while. Why, I hear you all ask - Well, we felt very brave and headed to France for our first summer holiday in 6 years. We stayed on a British campsite in a small french village for 2 weeks. Qasim spent all his time in the swimming pool, watching the birds and roosters, or playing chess with his older brothers. He had a great time!
It was a bit scary to be honest, going abroad with an OI child for the first time. What if we have a break? What if we need hospital treatment and can't speak enough French? We spent weeks planning beforehand, finding out where the hospitals are, how to get to them, and how to say Brittle Bones in french!
We got there in the end, though, and had an amazing time. The campsite, Camping de Courte Vallee, even held a quiz night in aid of the Brittle Bone Society, and raised £100!
We had no problems, thankfully, and we'd love to go there again next year.
Thanks to Jo, Alistair, and everyone at Camping de Courte Vallee for a fantastic break.

Tuesday, 5 July 2011

What's in a Snowflake??

Many of us who have children with OI call them our snowflakes.  Sounds crazy, I know, but it sums up what OI is in a nutshell (or snowflake!)
Snowflakes are fragile, and every one is unique and different from the next.  The same applies to OI.
There are several types of OI, from mild to severe. OI is caused by a collagen disorder that impacts on many elements of health, including bones that can break from little or no apparent trauma.
Qasim has type III OI which is severe. But two kids with type III can have completely different signs of OI, fracture rates, levels of mobility, etc.
I'm a mum of a type III kid, and can handle him safely, but would never consider handling another OI child without being shown how that kid can be handled.

So that's the boring technical sciency stuff over and done with, now onto real life and fun!
Because our snowflakes are KIDS first and foremost. OI just adds a little spice along the way!

Sunday, 3 July 2011

Starting Our Blog

This is our first blog for Qasim's Story.
For those of you that don't know us, Qasim is 6 yrs old, going on 16!!
He has a rare genetic condition, Osteogenesis Imperfecta (OI), also known as brittle bone disease.
Our aim is to raise awareness of OI, because awareness does make a difference.

So far,our OI journey has been a roller coaster ride of sorts.  From being told Qasim would not survive birth (his OI was picked up in utero), to then having a life expectancy of 2 weeks being definate lows. The highs have been surviving the first year, taking his first independent step age 5 after surgery, and currently planning his first experience of school for this September.

I'm sure there will be loads to blog with this little guy's attitude!