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?