Practicing sitting

I have been working on my sitting. I need help to get into position, I can't sit up by myself, but I am learning to balance. Did you know that if you put your arm out it can help stop you from falling over??

I managed to do this for a long time this day. It must have been on a day that I had my hamstrings worked on. I have had trouble doing this now, I must be a bit tight in my legs again.

Pushing up

This is me at the Andrea Plumb Clinic, one of the first times I was starting to push myself up



The more I practice the easier it is starting to become. I am also learning that if I spend more time pushing up, Andrea has less time to work on my muscles he he, clever.

Happy new year!

Happy new year everyone!

A big thank you to everyone that helped me through last year, your support has meant so much and you have helped my family and I through a really hard year. To everyone that gave their time, donated money or took the time to ask how I was doing, what you did for us was really appreciated.

You all helped me to raise all the money I needed for my therapies and specialist appointments that would have otherwise been hard- nearly impossible for me to do. As a result there are some things that I find easier to do.

In 2010.....

I learned to roll!

I started to eat!

I learned to push up!

I can follow a torch light with my eyes!

I tried to sleep and was good at it for a while!

I tried to sit up (more like stomach crunches)!

There is so much more I will try to achieve this year in 2011! Bring it on!

Surprise!!

Today I did something I had NEVER done before and we were lucky enough to catch it on camera! With a little help (but almost completely on my own) I lifted myself up! And to my complete surprise I could hold myself up so I looked around the room in amazement... I did not know I could do that- it was the greatest!! I could see things from a new perspective.

 In a room that I visit for two hours each week I showed

 my new skill.

Myo Fascial release therapy has done wonderful things for me. It loosens the tension in my muscles and makes movement easier. It will keep my bones straight and hopefully save me from many painful operations.

Mummy held my hands flat and I used my own strength to support my weight. I even managed to balance on my own! It felt like forever before I got tired and lay back down.

So this was my wonderful day. With lots of work I am going to have many more great achievements and surprises!

You just watch!

Exhaustion....

I must admit that we have all been soooo tired lately. It seems like we have been working non stop all the time, and so we should- we have a very important goal to reach. One that will change a life forever for the better.

I must also admit that with my sandy eyes I have not been working anywhere near as hard with Blaise has he deserves, but none the less we haven't stopped all together.

It feels like Blaise forever has appointments (and all early mornings too). We have been going to Myofascial release therapy at the Andrea Plumb Clinic twice a week- the best money we have ever spent for Blaise.... and swimming... and dieticians... and physios... and OTs....

Plus what we do for him at home.

But they say that with success comes renewed energy and spirit and I came by some today!

And although I am still tired I find myself itching to do more for him because Blaise wants more from himself and that is the most wonderful feeling.

I will share Blaise's glory in my next post which shows that there is a little person in my house that has been working lots harder than I thought I was.

Christmas Pie Drive

...Christmas Pie Drive...

We are running another great Homestylebake Pie drive!

There are some yummy Christmas cakes, plum puddings, rumballs and shortbreads to name just a few that have been added as extras to the normal pie drive order form.

$1 from every item sold will go directly to me to help with my therapies.

Money and order forms will need to be returned by 25th of November if you wish to participate and they will be delivered on 3rd December to our home in Roderick Street Ipswich.

If you would like an order form please let us know and we will email or post one out to you.

Blueberry Cereal

Since I have taken my NGT out I have been working very hard to find a way to eat 700 Calories per day. I found information that said you need 45 Calories per pound of weight. I now weigh 7.2kg approx 14.4 pounds (14.4 pounds x 45 calories = 648 calories needed per day). This Blueberry Cereal contains approx 164 calories.
This is my own recipe and I have done my own calculations so please consult a dietician if you need help with weight gain to ensure a balanced diet.

Blueberry Cereal
(makes approx 110g of cooked cereal)

2 teaspoons of Semolina (weighs approx 15g and contains 39.6 Calories)
1 teaspoon of cerevite (weighs 4g and contains 17.55 Calories)
9 fresh or frozen blueberries (weighs 16g and contains 8.16 Calories)
75mls of full cream milk (contains 48.75 Calories)
1 large teaspoon of honey (weighs 15g and contains 50.30 Calories)

Place all ingredients in a saucepan and stir until it gets hot and thickens. Mash the blueberries in the cereal as it is cooking to mix in the fruit. The cereal will become purple. More liquid can be added during or after cooking if needed.
Allow to cool before serving, again if it is too thick you can add more liquid.

You can change the honey for any kind of syrup for a flavour change. I use honey, golden syrup, maple syrup or malt. All have a good calorie content and add lots of flavour to breakfast time!