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!

Hi all!

Hi all!
I can't believe it's been so long.... Again!
The broken arm is healing nicely,  but had to be left displaced.  Surgery to straighten it out wouldn't have worked,  so we have had 6 months of nice healing. Another 6 to go before its completely sorted,  but there's no pain and Qasim can use his arm almost as much as before! 
The moral of this story for Qasim is that x box is not worth rushing through the kitchen for -  but it's a struggle to stop him trying to shoot off again. 
But yet again we have seen how fab our local hospital is,  and how great the staff are.  We even had a nurse nip to Costa for us and get us a cuppa tea because of the really long wait for the plaster room.
That's not to say we love hospitals,  but at least when we have to go we know the staff are all great. 
Unfortunately,  one of my fellow OI mums has had some recent problems at their local hospital with unresponsive (very probably over worked!)  staff,  but we are extremely thankful for our local nurses,  doctors at consultants. 
What's coming up?
Transition to high school (gulp!)  and leaving primary school.  I think both will be harder for me than Qasim! 

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. 

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! 

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 tracked..so 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!

Holidays...

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.
And......
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