Saturday, 19 September 2015

Oh dear!

Quick Update

It had to happen one day!
Normally I update when I realise it has been a long while since I posted anything, or we have had a fracture.
Well this time we have a fracture.
Qasim fell in the kitchen last weekend.  He fractured his upper arm bone -  called the humerous. 
There MUST be a link between that name and why they call it the funny bone!  But I've never had the time to look into it. 
Anyway -  fracture was right through the bone and displaced,  so not very nice. 
Lots of pain relief and almost a week later,  and Qasim can finally move without being in pain. 
This looks like the beginning of looking at  rod surgery in the arms -  something I really wanted to avoid.  But we'll see.
Here's hoping the next few weeks go smoothly,  and Qasim heals up nice and strong. 

Tuesday, 2 June 2015

Planning for the next big step

I can't believe we are planning this already... High school!
Past experience has taught us (the hard way)  to plan for these things well in advance. 
We had planned to go to a junior school,  which  said all the right things,  but unfortunately came no where near actually doing anything useful.  So we had a very quick transition to our current school which is fantastic.  Now we have to leave the fantastic school and venture into the realms of high school....... Very scary!
We have over a year and a bit for transition which is great.  And so far the high school we have opted for is mainstream, close enough to home,  and is saying all the right things.  We have a nice long transition period now where we can go visit with Qasim very regularly and see if this school can deliver what it says it can. 
So if you ever find yourself having to plan something like this,  it's NEVER too early to start.  Two years or one and a half years in advance is not too early.  Physio,  occupational therapy,  aides, parents, teachers and most importantly your child,  all have to be on board and all have to be happy to make it work. 
The earlier you start,  the earlier you can find potential problems and iron them out.
And any school that says two years is too early...? Don't bother going back to them! 

Friday, 10 April 2015

Thomas Land Fun

Finally,  we all went out for a day trip.  The whole family!
That's seven kids with two adults- the amount of times I have muttered  'I must be mad'  in the run up to the actual day..... I have lost count!

When we go out on a day trip,  it is like a military expedition.  We have check lists of what to take and what NOT to forget. 

Did I mention the 24 sandwiches (three different types to keep everyone happy..), the 20 packs of crisps,  16 fruit snack bars,  24 fruit juices and 12 cans of cola?  In addition to the spare clothes for little ones because you never know,  three sick bags because you never know,  and an ample supply of nappies,  baby wipes,  kitchen towel and a few extra pairs of socks. .. because you never know!

So after getting the car packed full with that little lot,  including a pram,  a wheelchair and the nine of us,  we really need a break before we get there.

So onto Thomas land which is at Drayton Manor theme park..... 

Car parking wasn't particularly well sign posted,  especially for disabled bays.  We managed though by cutting across a few grassy patches that I don't think we were supposed to,  but we made it in the end.

And it was  busy.  Very busy.
Even so,  we weren't queuing for that long before getting through.  And the little ones loved Thomas.
There was plenty for the older kids as well with the main theme park rides. Disabled access to everything was fantastic. There was fast track access because we had the wheelchair to the Thomas and Percy train rides.  And staff helped us on the train before letting anyone else on the platform so there was no risk of crushing or pushing.... Such a relief with brittle bones. The train driver even stopped to chat with Qasim and check he was happy and everything was OK for him.
Because we had a mountain of food in the car we didn't try any of the vendors there for a big meal.  We did get two coffees and six ice creams which came to just about £18 so it wasn't too badly priced.  Obviously a bit pricey because these places always are, but not overly so.
Kids rides where short on queuing time,  but there was so many of them its not surprising.  The longest kids queue was probably the train ride which we fast for us it was only five minutes.
The main theme park had huge queuing times which we expected.  But that's not too bad -  older kids are happy to queue for a while before being hurtled through the air.  Small kids aren't!

All in all it was a great day.
Great entertainment, great staff and easily accessible. 
Not one autistic melt down in sight which is fabulous when it comes to these places. 
We can't wait to go back again.... But we  need a break from all that sandwich making first!

Sunday, 5 April 2015


Easter holidays are here!
We haven't had a bad run of late.
A few niggly issues with the recurrence of scoliosis which seems to have popped up over the last 6 months and appears to have a few professionals in a flap.
A few broken fingers over the last few months  but nothing we can't handle at home.
We are braving the theme park world and are soon to be visiting Thomas Land,  courtesy of the 2 yr olds love of all things Thomas  and trains.

So we are really hoping they are wheelchair/disability friendly,  and there are some good activities that everyone can get involved in. ..... Mmmmmmmm -  there maybe a Thomas Land Review coming up!

And don't forget Wishbone Day is coming up next month.  Awareness makes a huge difference  -  it's not about the money!  Xxx

Monday, 2 March 2015

Wishbone Day 2015

For those of you who don't know, wishbone day is on May 6th.  Wishbone day is a world wide awareness day of a condition called Osteogenesis Imperfecta, which my son has - also known as brittle bone disease.  The colour for Wishbone day is yellow...... So throughout March, April and May,  all yellow items will have a 15% discount  at Crochetknows.  Just mention code Wishbone15 when ordering. 
For more information on Osteogenesis Imperfecta go visit and you can follow our story here.
Because Awareness Makes A Difference.

Just go to to order and browse xx

Sunday, 4 May 2014

No news is good news.....

They say no news is good news.
So this should be a warning that we have news.......
It has been such a long time, but since our last foot fracture waaaay back in about 2010, we have been pretty fracture free. Not including the odd finger here and there.
So today the sun is shining, the birds are singing and we get a letter from the childrens hospital that Qasim's vitamin D levels are low. So low as to be shocking.  (20-50 is deemed normal. Qasims is just over 7).
So we have the bright idea of doing some extra playing outside in the garden - soak up some of that sun and get that vitamin d boosted as naturally as possible while we wait for the gp to prescribe the supplements we need.

And thats when our 4 yr fracture free record is broken - quite literally.

It wasn't a fall or a trip. It wasn't anything dramatic like a football or a spare tennis ball flying around. One minute Qasim was fine, the next his foot gave way. Nobody near him, no knocks or bumps.

I guess this is the part of OI that we have forgotten about.
Sometimes there is just no reason to break. There is no sinister trauma or 'accident'.

My little man broke his foot just looking at the grass, listening to the birds and enjoying the sun.
So the rest of this beautiful sunny day was spent in hospital and having x rays done.
But at the end of the day we really have had an easy time the last few years.  We have seen our friends fracture over and over. Some have had fractures that just wont heal. Some have been stuck in hospital for weeks while dr's poke and prod and play guessing games, unable to give them a diagnosis.

So I guess one fracture in four years is really bloody brilliant!

Sunday, 30 June 2013

Sickness bugs.......

The ones that make you sick.
Well, to be precise the ones that make Qasim sick.

Because Qasim is never a little bit ill. He is either absolutely fine, or he is really really ill.

Thankfully he isn't ill often. He is 8 yrs old and only ever had antibiotics once for a chest infection.

But sickness is his weakness.
He will be sick until there is nothing left to be sick with.
And he will be sick in his sleep but not be able to wake himself up. So at these times of stomach bugs, we have to sit up with him all night and help him if he is sick in his sleep.

So I'm really hoping that this bug is a short one and he is not ill overnight.

And if anyone knows any good remedies please please let me know!!