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!

Leaps and Bounds

This is me in my latest piece of equipment it is called a bumbo

I wanted to keep this blog happy and positive and I have some really great news about my progress! All of this has happened in the last week.

My vision... My eyes seem to have improved! To focus on my hand I used to hold my fingers 5cms from my face, and to see my fingers now I hold them around 15cm from my face! I can also see that people are there from further away too!

My right arm... I used my right arm to stretch my back. I lifted it right up above my head and did my       "I'm so tired but I'm awake stretch"

My left arm... I hadn't seen my Great Grandma for a while and when she was giving me a cuddle. I straightened my back, lifted my head pushed my self out with my arm and looked around - you have never seen someone so excited to see what I can do.

My left fingers... I can seperate out my fingers now. I can put one or as many as I want to in my mouth. I can isolate my thumb only if that's what I feel like doing. (I still can't grab or hold though)

My left leg... I was rocking out in my bouncer- my favourite thing in the world, and I kicked my foot on the corner of the wall. Mum thought I would cry, but I tapped my foot around to find it again and I kicked myself away from that darn wall! It was in my way!

My Torso... As you can see I have a new piece of equipment called a bumbo. It helps me to sit by supporting my hips. It is my job to work my abdominal muscles to balance me so I can sit upright. I have had comments today from the physio about how much more strength I have in only one week.

My Eating... You may also notice that my Nasal Gastric Tube is gone. It fell out and Mum decided not to take me for a new one (I'll say yet). It's a good thing she didn't because I had forgotten how to eat. I'm all good now though, wolfing down 5 meals per day! Let's see if this helps my weight!

Thanks to everyone that takes the time to read about me. Please join as a follower so that I know you are there!

Feeding Tube vs Weight Gain

I was told that having a nasal gastric tube in was a sure fire way to "fatten" me up and to help me to grow. After having my night feeds for 7 weeks now, I have now puzzled doctors... I have still put on the same amount of weight as I was normally without the tube.
The thing is having the tube in has made me not want to eat like I did normally during the day, I gag on my foods - and I have started being sick on formula during the night because of it. It has been suggested that I now be fed through my NGT for day time feeds too- not something I want to do. The truth is I LOVE FOOD, I LOVE TO EAT it makes me excited and my eyes sparkle and dance.
Mum has this great cookbook that my Aunty Megan found for me called Wholefood for children by Jude Blereau. She got it just before I went on night feeds, and it has some great tasting receipes in it with ingredients that we hadn't even heard of and we are itching to see if they work for me.
Mum took my tube out last night to give me a couple of days break, ( I have been vomiting so much these last few nights) and this morning I ate a HUGE bowl of yummy cereals (semolina, wheatgerm and maple syrup) Mmmmm!
I think that for me food is the best way to help me grow. Before my tube was in place I weighed 6.78 kgs and after a month using it I weighed 6.83kgs.
I am not skinny - just little - just me, with lots still to learn about eating.

Believe in Magic- The Matt Hollywood Show!

Our Matt Hollywood show was a Huge Success! Thank you to the hundreds of people that attended- Most of you I hadn't met before!

Matt Hollywood performed 3 Grand Illusion Magic Shows and we could not believe our eyes... Yes Matt really did levitate an audience member and as you can see he isn't using a fake leg.... He was also amazingly funny and a genuinely nice person.

 We couldn't have asked for a more perfect entertainer or theme. Let's just hope that some Matt Hollywood magic has rubbed off on me... it is time to get back into my therapies full time and I hope to progress in leaps and bounds!

Officeworks BBQ Results

We have been so busy that we have't had time to calculate the money we raised form the officeworks BBQ on 26th June.

Well finally we have the tally!

$1975.05

Thanks to all the very kind people who gave up their day to help cook and run the BBQs.

All the money raised will help me get therapies and equipment that I would normally not be able to have.

The countdown is on!

The countdown is on!

In 5 DAYS!!!

Matt Hollywood will be here doing his great shows at the Ipswich RSL Services Club!

He will be levitating people from the audience, making people disappear- and then magically reappear right in front of your eyes!

He is also working on some great new illusions and tricks that have never been seen before - it's going to be great!

Don't miss out on your tickets we still have heaps left

Friday night $45 per person

Saturday Lunch $35 Adult $25 kids

Saturday Night $45 per person

Includes a buffet meal and a not to be missed show!

All the procedes go towards my medical expenses

Please come and see us for your tickets at the Ipswich RSL Services Club daily from 4-7pm or call Dawn on 0407324222

Help Wanted

A few months ago I was visited by Chad Timmermans from the Australian Institute for the Achievement of Human Potential - AIAHP. Chad assessed my skills and abilities and wrote me a special exercise programme to follow. It is designed just for me, to help me reach the next level of development. I eventually need to do atleast 4 hours of exercises per day as well as all the other specialist visits and alternative therapies that are good for me. Some of the exercises only need one person, some need two and there is one extremely important exercise that needs 3 people to move me together. If you ever have some spare time and would like to help me please let me know. I would be very grateful for your help! These exercises are an essential part of my rehabilitation but it takes up so much time that Mum and Dad really need some help!

I will write more about Chad and the exercises that I need to do but in the mean time if you would like to know more the AIAHP website is http://www.aiahp.org/

My Nasal Gastric Tube

This is my brother Corey and me!

Last week I spent a few days in hospital being fitted with a NGT - Nasal Gastric Tube. I am fed through this tube for 10 hours every night, not because I can't eat... because I can... but because I need lots more calories than other children to help me to grow. The doctors have given me a special formula that has 1 calorie per ml. It made me sick for the first few days until they got the dose right. At the moment I am at 27 mls per hour so 270mls per night.
It is a pain and not nice to have, it irritates me and makes it harder for me to eat. But it is lots better than having a permanent one through my belly. Hopefully I won't have to have it in for long if it makes my weight rise faster. I need to put on about 3 kilos... I will keep you all posted :)

Myofascial Release

3 times per fortnight I go to the Andrea Plumb Clinic in Silkstone. Andrea works on my muscles doing myofascial release therapy, it is hard to describe, it is sort of like she gives me little chinese burns all over. Everyones muscles are coated with a muscular stocking (fascia) that helps to keep all our muscles connected and gives us support. It can also be so strong and pull so tight it is capable of breaking bones!  Because of the trouble I have using my muscles my fascia is tight and she works to loosen it. It does hurt to start with! Depending on which part of me Andrea works on the pain level is different. For example when I had my first visit everywhere hurt. Now in some places it doesn't hurt so much. She aways works on my right arm to help make it easier to move and my legs to help stop them from crossing over like scissors when I kick. I had a session last night and she worked on my neck- gee that hurt! It is a new spot for me! And then we worked on my right arm. It felt so good I nearly went to sleep! So the more I go and the more places I have worked on the less pain I will be in and the more freely I will be able to move. Andrea calls herself a "problem solver" she likes challenges... and I can give her plenty of those! You can see more info about Andrea and her different therapies on her website http://www.aptherapies.com.au/ - She is great!

I'm going to be in the paper!

Keep an eye out for me in the QT sometime this week and in the Advertiser on Wednesday16th June. They came and asked me about my show and took some photos. Don't forget that my show is only one month away now!! It's coming up fast! Please get in and buy your tickets for the best seats before people read all about it in the paper.... You don't want to miss out!

Blaise day Sausage Sizzle at Officeworks

Officeworks stores around Queensland are doing a special sausage sizzle just for me on Saturday 26th June. I am looking for some back up volunteers that wouldn't mind cooking and selling Sausages on this day. We are in the process of organising this with Rotary but just incase they can't come I am asking any one who is interested to put their name down to help.

The stores so far are - Ipswich, Toowoomba, Oxley, Lismore, Loganholme, Mt Gravatt, Windsor, Virginia, Aspley, Rockhampton, Capalaba and Hervey Bay- more might still join in.

The very nice staff at Hervey Bay have volunteered their time to run the sausage sizzle on our behalf.

If you are free on this day and would like to help out, please let me know. We need about 3 people per stall.
The selling times will be between 10am - 2 or 3pm

I am learning!

Hello Everyone... I have a new skill to share....

I am learning to roll from my belly to my back...

I am a very clever boy...

I just need to work out that right arm of mine and I will be set...

I have been Sleeping...

The last two nights I have discovered this wonderful thing.... It is called sleep!

I'm sure Mum had forgotten how great it is to have more than 3 hours in a row at night! I have recently discovered how wonderful it is. My Trick? I went to a Chiropractor.

It turns out that I had a short right leg which he popped back into place and he also adjusted my spine because it was rotated to my left side. I guess that not being able to move too well has made me a bit crooked. I hope that being able to sleep at night will happen all the time from now on- How great would that be? Atleast now I think I know what my problem might be if I have trouble again.... And I know where I will go!

What is it like raising a special needs child??

I didn't write this story, but we have come across it several times and the further along we go on our journey with Blaise the more relevant it feels to us.

...WELCOME TO HOLLAND...

 I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michaelangelo David. The Gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy."

But there's been a change in the flight plan. They have landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. You must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And the rest of your life you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Hydrotherapy

This is me doing my hydrotherapy. Hydrothearpy is very good for me because it helps me to feel my by body and it is nice to float about in the warm water. The spa needs to be at a special temperature of 34 degrees so that my body does't have to use its energy trying to keep me warm. 

It did take some getting used to though because it was scary  to be so far away from Dad in the water! Now I can splash about and Dad is teaching me the differnce between warm and cold and how to blow bubbles and soon I will start to go under water.

I have been given excercises by the AIAHP (I will tell you all about Chad in another story) that will teach me how to move so I can eventually swim on my own. That would be great! Moving in the water is alot easier than being on the floor, so really learning how to swim should be easier than learning how to crawl!

Thank you to my good friends the Wicks for letting me do these exercises at their house. It is really very nice of them and we appreciate it a whole lot! x o

Pie Drive Success!!

Hi Everyone!

I would like to say a big THANK YOU to everyone that helped me sell pies for my pie drive.

With your help we sold over 800 pies

and managed to raise $900!!!

Our Family greatly appreciates all your support!

What to do about your brain injured child

For those who have been told that there is no help for their child- READ THIS BOOK. For those seeking hope when they have been told ther is none- READ THIS BOOK. For those who believe that their child deserves to lead a better life than what is predicted for them- READ THIS BOOK.

 It is a sad fact that when your child has been diagnosed with a severe disability parents are often told not to expect much, that the brain cannot be fixed- in some cases it can. This book is written by Glenn Doman, founder of The Institutes in Phildephia USA. Through his life time of work with the brian injured he has proven that a damaged brain can be made to function again. He has developed a program that can help the blind to see, the deaf to hear, the immobile to crawl- then to walk and then to run. Don't be mistaken, this program is extremely hard work... but it can be done. If you are looking for hope- you will find some in this book.

Yesterday I met Matt Hollywood!

Yesterday I got to spend some time with Matt Hollywood! He came up to meet me and to see where we are holding our Magic Show in July. He was very nice... and tall too! He carried me around while we went over how the shows would run and told us all how fantastic this event is going to be. Matt had some great ideas too- it is going to be a great event! If you would like to see bits of his show you can see it on his website matthollywood.com and you won't be disapointed.
You can now buy tickets for my dinner shows on July 16th and 17th 2010- So get in fast before they are all gone! I would love to see you all there!

                  

My Therapies and Treatments

Although my treatments are just beginning I need to see alot of different people! I have a paediatrician that I see regularly. He doesn't give me exercises but he does give me medicines to make sure I can grow big and strong. He has given me melatonin that I need to take before I go to bed to tell my brain that it is night time, so I will go to sleep. I am still out smarting him with this at the moment though!
I see a Physiotherapist every month who gives me new exercises to do at home, and my opthalmologist (eye specialist) who has referred me to a low vision clinic because I also have Cerebral Vision Impairment or CVI. Which means that I can't see very well either. I haven't been to see them yet.
My latest specialist I have seen is a dietician who has written me a special milk formula and some other special things to put in my food like special oils and a high calorie powder. Hopefully this will make me put weight on so I won't need to have a feeding tube.
I know that soon I will be seeing an occupational therapist and a speech therapist so I can learn to maybe do things on my own someday.
And I have alot of exercises that the Australian Institute for the Achievement of Human Potential or aiahp have given me to do as well. I am a busy boy!

What I can do

When I was diagnosed with Cerebral Palsy I was 11 months old and could only roll from my back to my belly over my left arm. But wilth lots of work I can now roll over my right arm too. I still can't move around when I'm on my belly and I don't like that becase I can't roll back over onto my back and I get stuck!
I can also grab my left toes with my left hand when I am on my back on the floor. I try reeeeally hard to sit up but it is too hard for me yet. I will get there one day but it will be lots of work to learn to sit up. I will keep working so hard that one day I might even be able to hold on to a spoon!

What is Spastic Quadraplegic Cerebral Palsy?

In Australia a child is born with Cerebral Palsy every 18 hours. Cerebral Palsy can be seen in the first 12-18 months of life as it presents when children fail to reach their movement milestones.

Cerebral Palsy is a lifelong non progressive (but it can be changing) child hood disability. It is characterised by an inability to fully control motor function, particularly muscle control and coordination. Depending on which areas of the brain have been damaged one or more of the following may occur- abnormal sensation and perception, impairment of sight, hearing or speech, seizures and/or mental retardation.

Spastic Cerebral Palsy affects 70-80% of cases, the muscles are stiffly and permanently contracted. Quardaplegia affects all 4 limbs, trunk and head control. Sufferers cannot walk, have difficulty sitting, not able to move to and from a wheelchair independently and usually aren't able to feed themselves.

The good news is that chances of lessening the effects of Cerebral Palsy are greater when therapies are started at an early age.

Please Support Blaise!

Please join us for an amazing night out to raise funds for Blaise's Cerebal Palsy treatments!

Blaise's photograph by Studio Instinct Photography - Baby Photographer