Friday, April 8, 2011

Random questions you may know the answer to...

Question 1 Mic-keys
As you know we are new to  the mic-key - so we got a big shock the first time Ashlea's fell out.  It fell out one Thursday.  Then again on Friday.  And again on Sunday.  Each time the balloon was empty - so I tested it by filling it with water - couldn't find a leak - and replaced it.  After the 3rd time I put a new button in and  we haven't had any further problems.

My question is - how long should a mic-key last?  I think this one lasted 4 months.
Also, why did the balloon keep deflating even though I couldn't find a hole?  I tested my theory by filling the balloon of the old button with water and keeping it in a jar (as you do) - and a week later it is still full of water.  But as soon as you put it in her belly it loses the water.  Anyone know what's up with that?

Question 2 Coeliac Disease

Anyone know much about coeliac disease?  One of the interesting things that our tissue typing (for Ashlea's transplant) showed up was that Murray is genetically susceptible to coeliac disease.  The twins have also inherited this susceptibility (there are 3 HLA types associated with coeliac and he and the girls have all of them).  None of them have any symptoms though.  Emma on the other hand refuses to grow and spends a LOT of time on the toilet (sorry - TMI I know).  I am wondering if she has inherited this susceptibiltiy or if in fact is coeliac.  Any thoughts???  What a hassle that would be.

Question 3 Writing / Typing at School
Ashlea starts school next year and it has only just occurred to me that she can't write.  She is unlikely to ever be able to write.  Her ability to learn and understand will far outstrip her physical ability to write.  Which begs the question - what is she going to do at school???

Will she type?  Should I be looking at getting some equipment for her?  A computer?  A gadget of some sort?  I really don't want to 'waste' time trying to teach her to hand write - I would rather she understood the concepts of letters and reading and used an easier method to get them on paper.

Any thoughts?  I know many of you have school kids with phsyical disabilities.  What do your children do as an alternative to writing?

Question 4 Phone etiquette
Why do people think it is OK to talk on their mobile phones while using public toilets?  Seriously?  I work for a university, and a number of times this semester have had to listen to student's conversations while they are using the bathroom.  Seriously wrong.

Anyone got any answers for me?


Casey said...

I am the coeliac expert! Both Maddy and I are coeliac (gotta love those genetics). Its a big deal when you are first diagnosed but its easy to adapt to. We should talk!

E. said...

I'm a coeliac too. It's not that bad once you get used to it. Of course you can't eat most (if any) Lindt chocolate anymore....

Big brother, Little sister. said...

I'll put my hand up for the writing /typing question!
We have had first term with just using the pencil and hand and Cooper is over it as a complete tool- so we will stick to hand with letter recognition as far as tracing out the shape so he can oneday write his name but next term will use a computer with a keyguard/keyboard and an adpated joystick mouse, and the Ipad with letter writing apps...

any hot goss from the dunnies? ;)

Becca said...

Okay, here's a very quick and dirty rundown of the options: please note that all of these have reasons for and against using them with a kid like Ashlea.

Lower-tech: an Alphasmart. Bit like an electronic typewriter. No clever stuff. Light, small and don't usually break if you drop them. Might be tricky to see the screen for A.

Medium-tech: laptop of some sort. Much more potential for adding clever gadgets, I'm thinking particularly of Clicker. Can be very light but also may be pricey. More likely to break if dropped. Maybe add a larger monitor for improving vision access. Small ones can be a bit slow, which is frustrating.

High-tech: proper desktop PC. Pretty much infinite capacity for adding bits. Can get touchscreen monitors or work with a tablet controller for pen skills. Awful if you're moving rooms a lot.

Go find the blog "Teaching Learners with Multiple Special Needs".

Good luck!

Sarah-Beth said...

Sometimes a Mic-Key button's plasticity varies, which can lead to it deflating or forcing the water out.

Four months is a good length for a button to last. The length a button should last varies by patient/condition/stoma characteristics, plus a bunch of other variables.

And I second the "Teaching Learners with Multiple Special Needs." An absolutely wonderful site.

ferfischer said...

Question 1: We replace Cici's mic-key about every 3-4 months. The valve goes and occasionally it gets pulled out. That seems to be about right to me.

Question 2: No clue on celiac, although the gluten-free stuff is quite common around here.

Question 3: Get her an ipad. Without a doubt. Save up!

Question 4: Because they're idiots.