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

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 www.brittlebone.org and you can follow our story here.
Because Awareness Makes A Difference.

Just go to www.facebook.com/crochetknows to order and browse xx

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!

Sickness bugs.......

I HATE 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!!

Autism - Learning to love it!

I Know a few people whose children have autism. My boy does too. Personally I would put him as mild but his diagnosis has come back as moderate.

So this may not be popular with those whose children are worse than mine because each child is different and I wouldn't last more than 5 minutes with anyone elses autistic child, but I am learning to love my sons autism.

We are having some bathroom adaptations done to make the downstairs bathroom more wheel chair friendly.
Qasim is the kind of kid who loves routines and having things done at a set time,  in a set way. As long as he is warned of any changes in advance we are all good.
And let's be honest, you can make it work to your advantage.

We are NEVER late for school. EVER!
Why?
Because we have to leave the house at 8.25 precisely.  Which means we have to get Qasims uniform on at bang on 8.00. He has to have his breakfast at 7.45 which means he has to be up at 7.30.
So when he doesn't want to get up in the morning (and who can blame him) we just whisper the magic words 'but it's 7.30.' And boom - he's wide awake. If he is really tired he may ask 'is it am or pm' in the hope I will say pm - but reassure him it is indeed am, and he will be up and awake and ready for the day.

So to the bathroom adaptation.

He has been warned what is happening, he has to change rooms for two weeks because he can't sleep near any dust.
We have a new bed time.
And it is working!

So sometimes I love Autism.
No unpredictable melt downs because we know what will trigger one off and avoid the trigger.

And Qasim is better than an alarm clock for keeping us all on track!

Drowning in Equipment. - The hoops you have to jump through and the crap you have to keep!

Equipment - Arghhhhh.
I hate all this equipment.
And it is so hard to shift.

At the end of the day, I know it is just people doing their job, but really the system is so silly, I can't get my head around it.
For example -
Me -  We need an outdoor wheelchair. You know, the kind you can use outdoors.
The Policy Makers - Oh no, you can't have an outdoor wheelchair until you have had an indoor wheelchair for 6 months.
Me - But we don't need an indoor one, my son crawls in the house.
The Policy Makers - Then maybe you don't really need an outdoor one!
Me - Sorry? Can you see my son crawling down the street? We definitely need an outdoor one.
The Policy Makers - Well then, you have to have an indoor one for 6 months first.
Me - OK. Erm ,  can we use the indoor chair in hospital then?
The Policy Makers -  Well, I guess, but can you get it into the building without it going 'outside'?
Me - Well, it would have to go across the car park and in through the main door.
The Policy Makers - Ohhhh No! Sorry, can't take it across a car park.

Ok - so the indoor only chair sits at the bottom of my stairs for 6 months, never used, charged up once a week so the battery doesn't die.

6 Months Later.....

Me - Are we ready for that outdoor chair yet - so my son can go to school??
The Policy Makers - You had your indoor chair for 6 months then?
Me - Yes.
The Policy Makers - OK - it's  a two year waiting list for an outdoor chair. If I was you, I would just go get a private chair from somewhere else.
Me - @#*$@~

And then we have the equipment we have got, and this stuff isn't cheap. it costs thousands. I never thought a specialist car seat could cost over £1,600, but put the word specialist in front of it and the price triples.

So we have some chairs - very expensive chairs. Bought by the NHS. For thousands.
We don't really use them - we have found excellent alternatives that suit us much better and cost next to nothing in comparison.
Can I get rid of these chairs?- Can I boot.

Me -We have a couple of chairs we don't need. Do you want them back to pass onto another child who needs them?
The Policy Makers - Are you sure you don't need them?
Me - Yes.
The Policy Makers - Well, why don't you hang onto them in case you do decide to need them.
Me - No really, we don't want them. We don't need them. We don't use them.
The Policy Makers - Hold onto them anyway because you never know!
Me - But they are just sitting in my shed doing nothing.
The Policy Makers - Are you sure you don't need them?
Me - @#*$@~

So I have a shed full, and I mean full of chairs and equipment we don't need. Or want - did I say THOUSANDS of pounds worth?

So yes, it really is the hoops you have to jump through and the crap you have to keep.

Ch-ch-ch-ch-changes!

Qasim hates changes - and so do I! But he has autism, so you can kind of understand. I don't, I'm just happy when things are working fine and don't see a need to change them.
But we have had a bit of a major change in the last week.
Now changes are do-able and easy when we have lots of time to get ready. These are ones that are coming up and you know they will definitely happen on a certain day. For example - Qasim will be changing class in September. From September his teacher will  be Mr T. His classroom will be different - we can go visit his new class, his new teacher.

What is a problem is when one of his aides is leaving and we have only a few days notice. I understand she has a new job to go to, and wish her all the best. She has been brill with Qasim for the last two years. And people can't stay around forever - I just wish they could!

All of which has made us talk about changes - and what may change in the future.
The future is another concept Qasim has difficulty with - but we have to try anyway.

So all in all it has probably been a good experience for him. We have had to tackle something we both don't like - and we have come out the other side with no major melt downs. And we have talked about what may change in the future, so he will have some kind of foundation when things do change again.

Just so long as they don't change too often!

Charites and Gripes!

Well it's nearly May 6th. And that is Wishbone day. Which is the worldwide awareness day of Osteogenesis Imperfecta.
The motto for wishbone day is "awareness makes a difference".

Lots of people wear yellow on this day, and they do raise money for charity. Now this year, there seems to be a bit of trouble in the charity department!
Some people with kids who have the same condition as my son are feeling a bit short changed by charities at the moment.

People have had requests for helped ignored, support lacking, emails never returned. Questions over how money raised is spent.
So this year, I'm making a bit of a stand on this.
Wish bone day is not a money raising event - look at the wishbone day promo videos on you tube. They themselves state it's not about the money.
It is an AWARENESS day. Not a money day.

So I will be raising awareness of OI - which I do at every possible chance I get anyway.
And I'm not raising any money!

Quiet Days

It looks like we are having quiet days. No new things are really happening. Life has been wonderfully normal. Just the usual childhood bugs and not much else.
No fractures. No surgeries. No drama - yay!!
So if I have jinxed it all and we have a nightmare ahead, just slap me now.
Quiet is great in the real world, but not so great in the blogging world.
So is there anything any one wants me to address?? Any topics other OI mums or people in general would like to see?? If so, message me to let me know - otherwise no news is good news!

So Many Specialists - So Little Time.

Someone recently asked me where we find the time to fit in all the specialists that we see. Well, over the years there have been a lot.
Some we now see only once or twice a year, but in the early days we would have up to five appointments a week.
Add this to caring for a child with a condition you knew nothing about before, as well as the other kids, and lo and behold, Qasim became my full time job!
That's probably why it can be hard to let go a bit now. I'm all for teaching him to be independent, but when he has been totally dependent on you for seven years it can be hard to step back!

Yes I can be overprotective, yes I can make great excuses and really sound logical arguments as to why we shouldn't do X Y or Z. But at the end of the day, when you have an OI child, you are there to protect them, care for them and help them along the way.

But you are also there to teach them to do things for themselves. To show them that they can do the same things as their friends, just a little bit differently.
Because I won't be here for him forever - and sooner or later he has to take his own steps out into the big wide world alone.

I hope that he wouldn't want me tagging along with him to college, or high school, however hard and nerve wrecking it will be for us both!

It's been a long time......

It has, hasn't it!
We have had soo many things happen.
Qasim is no longer a fox, he changed schools and is now a hedgehog.
We had a fantastic sports day at his old infant school, an amazing leavers concert, a very teary last day. But we made some life long friends, met some wonderful people and learnt a lot about where not to go to junior school!

Yes, we had a major upset were the proposed junior school where we were going to showed us just how incapable they were when it came to dealing with a child who had special needs. And then showed us how aggressive they could be when we decided it was not the place to be.
It also showed us how great the level of care at his infant school was.
Well, it looks like the new school has a lot to live up to.
I hope they're up for the challenge.

Time Flies When You're Having Fun!

How long has it been??  Tooo long!!
Life has caught up with us yet again!
So what has been happening since September?

Well, Qasim is full time in school, and absolutely loves it.  His class is called the Foxes, and he loves being a fox - he has so many friends now, which for a child with moderate autism would have been unthinkable this time last year.
He has some brill teachers who have really helped him settle in.
The only down side to this is Qasim is going to have to leave this school, and start another one in September. The little man will be leaving infant school and going up to junior school.
If only we could take his whole class (building, teachers and all) along to junior school with him, that would be great. but we have to have a whole new environment, new teachers, new everything to get used to again :-((

We have had Wishbone Day earlier this month as well. The whole school wore Yellow in support of Wishbone Day, to raise money which was fantastic. We have some cracking photos of his teachers dressed as bananas, and Spongebobs. Someone was dressed as a Crayon, but I missed it - hopefully I can find them from somewhere.

Oh and how could I have forgotten - Qasim is a big brother again. Baby Zak was born in April, so it's all been busy busy. No wonder we haven't updated for a while.

And whats next??
SPORTS DAY - I am super excited - more than Qasim I reckon.
I can't wait to see what he does.
So keep watching, more updates on the way, we promise!

Now, if I can just find something to bribe his school with to keep him there another year..................

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........

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.