When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Saturday, July 28, 2012

RPAH Failsafe diet….and Veronika’s intollerances

About a month ago, at Veronika’s regular visit with her dietitian from the hospital at the hospital…she decided she wanted me to try the RPAH Failsafe Diet, because we have tried everything else in an attempt to get Veronika to eat….

FAILSAFE stands for Free of Additives, Low in Salicylates, Amines and Flavour Enhancers.

I then spent the next 2 weeks trying to get my head around the new restrictions I needed to implement, not only was the list limited for the initial stage of the elimination diet, but I also had to take into account all Veronika’s food intolerances, so not only did in need to eliminate so much, then I had to take out dairy, soy, eggs, gluten etc….so I talked with Elisa, a wonderful friend of mine who has used the RPAH diet before with her children to help with skin irritations. Elisa was an absolute wealth of information, and I went home after talking with her with a clearer idea of a food plan, and of course Elisa had a jar of pear jam for Veronika too(pears are the only fruit you can eat on the strict elimination diet).

I had come up with a rough idea of what Veronika could have at each meal and snack(well to be offered, because she has never really eaten anything much). Veronika refused her breakfast for the 1st week, I alternated between orgran custard made with her formula, and home-made gluten-free bread….after a week I was wracking my brains trying to think of something else to offer her. I thought maybe i could adapt a muffin recipe to be gluten, dairy, and egg free…so I made pear muffins, and she ate half a mini one for breakfast….I was so excited that Veronika had actually eaten something, so for the last week she has been eating pear muffin for breakfast. I have been making potato and leek soup for tea(and some times she has it for lunch too)…and I also made up a recipe for chicken ‘fingers’ with chicken breast that I minced with pear, celery, potato, then I added potato flour and rolled them in rice crumbs.

 I feel like I have spent all the time that I have been home, in the kitchen making up recipes or modifying recipes……

but if it works and Veronika eats then it is so worth the effort. We have another 2 weeks to go, but I am confident we will get thru the 4 weeks that the dietitian wanted her to try Failsafe for….then we will back to see her and tell her the results.

Monday, July 9, 2012

Hoping to find Veronika the right voice.....

Today we went to see the communication specialist...in the hope of finding a way Veronika can communicate, the next step in her transition to school in preparation for next year....

well our appointment went really well....what we were basically trying to find was a suitable way using technology that Veronika can use to communicate. Veronika only says a few words consistently(Mum, up, more and no), we have been teaching Veronika Auslan sign language(I started when she was around 6 months old, but it took well over a year before we got one back from her) and now Veronika would have 80 + signs she uses often putting 2 together (eg more + chocolate).

But because Veronika has Down Syndrome and Cerebral Palsy left side hemiplegia, her signs have been modified by her to accommodate her left hand, and thus there are less than a handful of people who can actually tell what she is signing.

At the same time, Veronika is very good at answering questions with a yes or no answer, by either nodding or shaking her head, or if it's a really definite no, she will say no, likewise if it's a definite yes, she will say yea.

So the aim of today was to find an app for Veronika's iPad that she can use to communicate with when she is in kinder next year, and we want to make sure there is enough time teach her how to use it. The communication specialist we saw specializes in communication with technology, using various devices as well as iPad. We decided that the iPad would probably be the best for Veronika considering she already has one. He was also very impressed with how well Veronika can navigate her iPad, and how accurate she is with her fine motor skills at touching the right part of the screen, even when the button is quite small.

We looked at quite a few apps, and how complex they could become...and decided that the one touch = one word would be most suitable for Veronika and the level she should be capable of. We are thinking about a minimum of 50 icons, but possibly 70  on the page with core words, then an option for 'fringe' words that she can use to expand on. There was one particular app that looked really good Touch Chat HD


The aim is that at the moment as an example is that Veronika can sign 'more' then 'bubbles'....but with the use using her iPad as a communication device, we can start to teach her sequence patterns, so instead of signing 'more' + "bubbles', we can teach her to use the iPad to say 'I want more' and then hopefully 'I want more bubbles please'. Teaching her some sentence structure.

So the next step is to borrow an iPad off the communication specialist for a few days, to see how well it does suit Veronika, before we go and spend that kind of money on an app that might not be suitable. Its great that there is the option to do this, as communication apps aren't cheap and we need to make sure it's the right one.

I know that Veronika has a lot to say, and I belive that she will talk at some point. But in the mean time this should hopefully reduce some of the frustration that she is experiencing when we don't know what she is trying to 'sign' to us.