Things are hotting up for summer

Hi everyone, It's been a while since we have given you all an update on whats been happening.

This year has gone so quickly with our trip to Europe in March, intensive therapy sessions every week at CPEC in Melbourne, Meg is swimming once or twice a week which she loves. Plus our daily exercise/therapy routine which takes up most of our day.
So we have little time to update our Blog.

Meg has learnt to blow bubbles in the pool and is now holding her breath when we put her under the water. This has been a great thing for her eating and drinking as she is learning the art of keeping her mouth closed and breathing through her nose.

Meg has had a great winter with only a few sniffles and one cough which she handled very well with a small dose of antibiotics, her health is excellent and her cheeks rosy and plump with the brightest blue eyes you have ever seen. They have the cheekiest sparkle in them when she is being naughty or cheeky.

We have had a great 6 months with her weight finally going over the 11kg mark it is just shy of one year since we weaned her from her tube feeds, she still has her PEG (feeding button in her tummy) as it's quite handy to give her foul tasting medicines and if her fluid intake is a little down we can give her some extra while she sleeps. The PEG is not doing any harm and really has given us the best of both worlds with keeping Meg as healthy as we can. We will consider removing it once she consistently is drinking 500mls of fluid a day.
Meg's eating is outstanding, and she has quite an appetite these days - she is basically eating everything we eat - just pureed, she is even having the odd honey or vegemite sandwich which she enjoys but is very slow - so we keep up with the purees. Her absolute favorite thing is Mini magnums - which I try to limit to one every second day.

Meg has had difficulty this year tolerating her therapy and we have been working hard with the team at CPEC to overcome this with help from the child Psychologist . Despite our best efforts her progress remains slow. We are trying many different approaches to make her more comfortable in her therapy positions and many many adjustments to her orthotics etc.

The main difference we have seen since her stem cell therapy has been her ability to facial focus, I talked about this being one of the first things we noticed after her treatment. Meg now often stares lovingly into my eyes - which of course makes me cry every time!

The relaxation in the spasticity in her hands has also continued but not improved much.

Our next big hurdle is to get Meg actively stepping and even possibly walking in a walker. This is extremely difficult for her as she has what is known as fluctuating tone - so she goes from being extremely floppy to extremely stiff and she has to work extra hard to find the middle ground. It is so important for us to get Meg weight bearing as her left hip is more than 50% out and needs the weight bearing to form correctly, we are looking at surgery early in the new year to help with this in conjunction with Botox and Phenel to relieve the spacticity in her muscles.

That's about all I have time for today, please keep in touch.

Have more exciting fundraising news coming up!

Kate Meg & Tom
xx

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