America Day 1 - TheraSuit Session 1

Today I had my first session at the Pediatric Fitness Center in Keego Harbor, Michigan, where they specialise in using a specially designed suit called the TheraSuit.

The person helping me to learn to use my muscles is Chris.

The first hour of my session is used to warm up my muscles so that they will be nice and loose so that I can use them more easily. It felt pretty good to be warm all over!

Then my muscles were stretched. This is nothing new to me, I have this done all the time, it doesn't hurt, but I cried anyway! My limbs that weren't being worked on were weighed down with sand bags. This stopped me from moving around and rolling off the table and is done to make me very aware of the muscles I have in my torso. The only muscles I am able to use at the time because they aren't weighed down.

Chris is showing me which muscles I need to use so that I can move my legs. In this photo I am using my leg to push down on a pully that has a 1kg weight on it. This will help me to gain strength in the muscles I need to use. It is very hard work!

Weight bearing on my arms to help me long sit is a lot of effort. I will need to learn to do this so I can use my arms to prop myself up and to help me balance while I am sitting.

I practiced standing up too. I can't begin to explain how terribly hard this all was for me today. I have lots of muscles I have never used before!

After my big day of exercises, I will be back again to do this all again tomorrow - PLUS MORE! Tomorrow I get to try the TheraSuit!

My American Journey Day 1

Today (Monday 2nd April 2012) is my first Therapy day in the USA! We have been saving for 2 years, and it just feels amazing that we have the opportunity to finally come to America to do these therapies. We are doing 60 hours of the TheraSuit Therapy and hoping to achieve 40 hours of HBOT to maximise the reward for all my hard work. The USA seem to be leading the way with Cerebral Palsy treatments, especially alternative ones and there is a specialist Speech Therapy centre that we hope to visit as well. At the moment it feels like the world is my oyster and I am going to work as hard as I can to make the biggest and most valuable pearl I possibly can!

Yesterday I turned 3 :D

Syntonics Green/Blue and Lemon lights

At the same time the Lemon light was introduced I started to sleep less. I was cranky too. It has been a while since I have woken up very early in the mornings - And I have been going to sleep very late in the evenings too. This is just terrible for Mummy and Daddy. It makes them VERY tired.

I must admit though that perhaps something with my vision has started to improve. I have been opening my mouth at the appropriate time when the spoon approaches to eat and it has been mentioned to Mummy that I haven't been going cross eyed like I used to... My Aunty Fiona was thrilled the other night when she said my name and I looked her in the eye! She see's me fairly regularly and this was something completely new for her.

Syntonics - The Blue/Green light

I have just finished 7 nights using the Blue/Green light. I can't say there have been any really noticible improvements, but I have had a couple of therapists mention they thought I was holding eye contact a bit longer than usual and Mummy has noticed that twice I have gone to sleep on my right side - I am ALWAYS a left side sleeper. Tonight I start the next step which is mixing in some Lemon light.

Syntonic Phototherapy

Tonight was my third night of trying a new therapy called "Syntonic Phototherapy".

My current syntonic phototherapy programme needs to be done once a day 7 days a week for 28 days. Each session is 20 mins. I need to be in a completely dark room and look at a coloured light. This sounds easier than it really is. The light needs to be 50cm from my face in my line of sight. So Mummy and Daddy have been waiting for me to go to sleep and positioning the box so it is where it needs to be.

I don't need to have my eyes open for this therapy to work. You can see light through your eyelids when your eyes are closed. Just like if someone shines a torch in your eyes or you close them because the sun is in them, you can still see  the light.

For week 1 I look at a Blue/Green light for 20 mins.
For week 2 this changes to a Blue/Green light for 15 mins and a Lemon light for 5 mins.
Week 3 and 4 are still Blue/Green for 10 mins and Lemon for 10 mins.

Gradually I will move towards red lights.

This therapy makes a difference to some people, but some people it makes no difference at all. It has even been recorded to aid with sleeping and skin conditions!

I have yet to see any differences with my vision, but it is only day 3 of 28 days with a Blue/Green light!

 This is what the light looks like, It comes from a little rectangle box with a round light, and a coloured slide slots in the top to change the colour.

Lesley Vedelago

When I was first diagnosed with having Cerebral Palsy I was referred to an opthamologist (a specialist that works with eye disorders and diseases) who diagnosed me with Cortical Visual Impairment. We weren't given much information about what it actually is. We were told that there was nothing wrong with my eyes physically and that my trouble with my vision was a brain issue. There was nothing they could really do to help. I was told that I might have good days and bad days and my vision might continue to improve until I was about 8 years old.

I had heard a few good things about a lady called Lesley Vedelago. She is an optometrist that works with eyes and their connection to the brain.

We had a fairly lengthy evaluation with Lesley a couple of weeks ago and she determined that I was long sighted and for me to see anything it would have to be extremely magnified. She prescribed glasses, visual exercises  and something called Syntonic Phototherapy. The glasses were ready for us to collect today but they were accidently sent in with a pink frame! They are being swapped for blue frames and I should have them early next week.

Results on the CPL food trial

The high calorie food trial has finished. I can't say that it really helped me with any weight gain, although perhaps it meant that I only needed to eat smaller portions of food. At first when I ate it I was a bit surprised with the smoothness. I am used to something a bit "chunkier" because I am learning to chew now.

The vegetable lentil flavour was ok. I barely noticed it when it was mixed in my food and I could eat it on its own if I was really hungry.

The Banana Smoothy had a funny taste. I didn't like this on its own at all and to eat it Mummy had to mix it in with yoghurt. She couldn't mix much in because it had a VERY strong flavour. We didn't use much of this one. It really put me off my food when it was mixed in.

We also found that if I had more than a couple of packets in a few days it would give me a touch of the runs. We discussed this with our speech therapist who was coordinating this with the dietician and she said that it had occurred in a few children too. Perhaps because it contained a lot of essential oils.