Surgery, Legs, School Holidays!

When is the ideal time to have leg surgery?
Probably any time to be honest - but Qasim has had his last week, right at the beginning of the school holidays!
On the bright side - he wont miss any school.
On the down side - he wont miss any school. 😂

Surgeries are always a worry for us - Qasim gets this condition under anaesthetic called malignant Hyperpyrexia. The clue is in the word malignant - it's not good.
This results in something else called Metabolic Acidosis which results in organ shutdown - so any surgery for us is even more of a worry than normal.
End solution has been to change the anaesthetic to one less associated with this reaction - which has worked so far.

So as you can see one of the great things about Osteogenesis Imperfecta is that it is not just about Osteogenesis Imperfecta.  It's all the other stuff around it - like Malignant Hyperpyrexia. Like endless physio. Like huge hospital waits. Like missing school holidays because of surgeries.

But with every cloud there's a silver lining - we've met some amazing families all on a similar journey to ours.  We've had some amazing staff help care for Qasim when he's needed the support.

Sometimes you just have to focus on the good bits even through the bad bits.

2018 - More fun!

Well, it has been a while....again!

Lots has happened since we were last on here.

High School transition has gone really well - Qasim is now in a mainstream high school with a 1:1 with him at all times. The school has been outstanding in their approach to Qasim - both seeing the need to educate his fellow class mates about his condition and make sure Qasim's physical safety is uppermost in their concens. Yet they also are ensuring he is treated equally  - he does get warnings for not doing his homework and is expected to work as hard as everyone else.

We have also had a leg rodding surgery in the last year - Qasim has rods in his legs to strengthen and support him - preventing fractures and enabling him to have some independent mobility. All four of the rods need to be replaced. Two femurs were replaced last year and we are expecting the Tibia rods to be replaced in a few months time. 

We have had some nasty surprises - two compression fractures in his spine that Qasim never even noticed!

It just goes to show you that his positive outlook can overcome even fracture pain. Ask anyone who has met him - he is the most positive little man you could meet!