Saturday, December 31, 2011

2012 Goals

I must say 2011 has been a pretty good year for me. We found a couple of new exciting therapies-Hyperbaric Oxygen and The TheraSuit Method, and I have learned a few new skills!

But, I have a list of goals for 2012

* Complete another 40-80 hours of Hyperbaric Oxygen
* Do 60 hours of intensive therapy in Michigan USA using the TheraSuit Method
* Buy a dvd to see what the Anat Baniel Method is all about (This therapy looks great!)
* Work out a way to attend Conductive Education Queensland at least once a week
* Continue with Myofascial Release Therapy, Chiropractic, Swimming and my other regular therapies
*And if I could learn to suck from a bottle that would be absolutely fantastic... but I know I will have a bit of trouble with that one!

I would also like to start saving for our very own hyperbaric chamber - Very big goals to reach indeed!

But if we aim for the Moon and fail, we will still find ourselves among the stars!

Happy New Year Everyone!

Corey and me!


 

Wednesday, December 28, 2011

Ch-Ch-Ch-Changes!

I have had so many positive changes occur during 2011!

I have started gaining weight!
The textures I can eat have greatly increased!
My legs don't "scissor" like they used to!
I am stronger!
I can use my jolly jumper!
I can balance when I am positioned to sit!
I can sit myself up if I am on an incline!
My muscles are looser and easier to move!
I notice lots more things around me now!
I can pat faces and pull hair and ears with my left hand!
I am much more vocal and have a much louder "voice"!
I held on to and ate an ice cream (once)!
I can push up with my hands (with help) and sit on my knees (balancing still needs work)!
I roll over and over and over!

An example of my looseness!

May 2011


December 2011



I am sure there are more too! If I think of them before the end of the year I will add them in!

2011 Therapies in Retrospect

Looking back, 2011 has really been a great year for me. I found and took part in some really promising new therapies as well as continuing with some old faithfuls!

I continued working hard with Andrea from AP Therapies
(Approx 48 hours)
As good as this looks I am not crawling, just balancing

Completed 40 hours of Hyperbaric Oxygen Therapy at Hyperbaric Worx

Worked hard doing 10 hours of Bobath Therapy

18 hours of combined PT/OT/SP

44 Swimming lessons (total 14.4 hours)

About 10 Chiropractic adjustments
(Sorry, no pics of me, I am not the happiest here- although I feel great afterwards!)

The tiniest bit at Conductive Education Queensland
(I really want to get back for more of this!)


All of these therapies have really kept me busy this year. Not to mention all the other appointments I have had also.... Every one of these have helped me come a really long way in 2011!













Thursday, December 22, 2011

There is a first time for everything!

There is a first time for everything! The other night Daddy noticed I was rolling differently. I was using my legs independently, one leg and then the other, rolling from side to side. As Mummy was filming this new skill, I rolled over to my belly and did something completely new! I got up on 2 knees and pushed up with my left arm! I just need to work out my right arm and I will be on my way!

video

HBOT - Day 40!!

I have completed my first cycle of 40 hours! In between my 39th and 40th hour I have really come alive! There is no other word to use other than alive, I am doing new things, making new sounds and developing new skills. It is a shame that we will be stopping HBOT again for a little while... It has truly been an amazing therapy for me! People who only see me once a week have definately noticed my new found "cleverness". It is definately a therapy I am going to continue!

Mummy and Daddy are really just so happy to have made the 40 hours before the end of 2011. Bring on 2012 and more Hyperbaric Oxygen Treatment!

Going in...

Coming out!

Sunday, December 18, 2011

CPL Special High Calorie Food Trial

I am taking part in a high calorie food trial with the Cerebral Palsy League. I need LOTS of calories to help me grow and keep weight on. It is a common practice for children like me with Spastic Quadraplegic Cerebral Palsy to have a peg or a button placed through their belly and directly into their stomach. But this is something that Mummy and Daddy have refused to do. I have trialled a nasal gastric tube before, but the nutrini formula that they normally feed you on made me sick and it didn't seem to help my growth at all. AND to top it off I forgot how to eat...

The Cerebral Palsy league in conjunction with a dietician have developed some pre packaged high calorie foods that they need to trial. They are looking to find information about taste - do I like it...? Will I get sick of the taste...? Does it affect my weight...? Only time will tell!

I have been given two flavours for this 4 week trial. Vegetable and Lentil and Banana Smoothy
They are a pureed consistency, and perhaps not really that tasty. The Vegetable and Lentil is the better tasting of the two. Mummy can't say that she would like to eat it all the time. It has a little bit of an odd taste that she can't quite put her finger on... It has lots of sweet potato and essential oils in it (for a calorie boost) but I eat sweet potato all the time. Mummy has been mixing some in with my normal veges and it masks the flavour a little bit.
The Banana Smoothy Is sickly sweet. It also tastes a bit funny to Mummy and Corey didn't like it at all! Yuck! Mummy has been mixing this with some yoghurt and it goes down ok. I had two serves of it in a row yesterday and it made me vomit. Not sure if it was because I gorged myself or if it really is that sweet that a really small amount will do.

I can't say that the taste of either one is yucky to me. I don't mind eating either of them. Again this is a "time will tell" scenario.

Right now I weigh 9.2kgs and I am about 85cms long. Stay tuned!

HBOT - Day 39

Fridays session I went into the chamber with Daddy, because Mummy has a sore ear and it is not a nice experience in the chamber if you are having ear problems. I still cried as we were pressurising, but not as much as I have been. Stuart stopped and released a bit of pressure as we were pressurising, before continuing. There was even a time where I got pretty comfy and laid right back for a nice warm cuddle with Daddy! He is good at those...

I am starting to become a bit more vocal and active at home now too. Today I was really bright and energetic and I am starting to squeel as I am enjoying myself. My most favourite thing is to bounce in my bouncer. I can do this myself by waving my left arm and kicking my legs. I have even mastered my jolly jumper! I used to just dangle but now I can kick up with my legs.

I can even open my mouth for a kiss now! It is so wonderful that now I can give out my own big slobbery kisses!

Mummy had forgotten how great HBOT was for me. My eyes seem to have so much more life in them today than I have had in a while - my initial HBOT spark never disappeared, but you can really tell something is changing again somehow.

AND I have even been sleeping better! I am up again on the odd occasion for a snack (a big one!) at 3am... But this can only be a good thing!

Monday, December 12, 2011

HBOT - Day 38

On Friday I did my 38th hour of HBOT. I am starting to settle back in the the rhythm of things. The pressure only bothered me a little and I put my hand in my hair (as I do when I am getting comfy) and had a little sleep for the first part of the hour. I still woke up and cried a little, though nothing like I have been crying. I still seem to be a little stiff.... I have had Andrea (my therapist) and Rob (my chiro) comment on how stiff my legs and ankles have been lately too.
The dark circles have come back faintly under my eyes and I have done a couple of HBOT poos! (You can tell they are caused by the Hyperbaric Oxygen, because the smell is not normal and really awful!)

I am starting to explore inside my hood again too by tapping all around inside with my left hand.

Not long to go and I will have completed my first whole cycle of Hyperbaric Oxygen Therapy!!
Getting ready for a sleep!

Tuesday, December 6, 2011

HBOT - Day 37

Today was another miserable day of HBOT. I was crying so much that we didn't even get to the proper pressure. There might have been about two five minute blocks in the whole hour that I wasn't crying. I was so very happy to be finished in there today so I could have my big cuddle with Mummy.
Stuart the man who runs the hyperbaric chamber thought I may have had issues with my ears and he checked them before we went home, but they were clear. I used to be so excited and happy to be going into the chamber, now it seems like I need to get used to it all over again. I don't know what is wrong. No photos today... I was all red and blotchy from being upset. Only 3 more hours to go for the rest of the year.

Saturday, December 3, 2011

HBOT - Day 36

I am back in the saddle again! Yesterday was my 36th hour of HBOT at Hyperbaric Worx. I found it a bit hard to equalise my ears and we had to take it really slow. When we were at pressure Mummy started to put my hood on and she noticed that one of the seals was missing... So we had to depresurise so we could fix it up and we went again. My ears weren't much better the second time, but we got there! I cried for nearly the whole session, but at least I was getting lungs full of that good pressurised oxygen! My legs were very stiff and even jiggling and bouncing me didn't really make a difference. I was very happy to go home.

Thursday, December 1, 2011

Getting back to HBOT

Well after a break from HBOT I am finally getting back to do my final 5 hours this year. This will bring me up to 40 hours, which is classed as a full block of hyperbaric oxygen treatment. So we are heading back to Hyperbaricworx tomorrow.

I have been getting a few muscle spasms lately and they really hurt me sometimes. I very rarely had these when I was having regular HBOT. So I am hoping that it is HBOT that will make a differnce.

This aside, I have still been progressing. My right hand is generally more relaxed than it has ever been. My balance and strength is improving and I am gaining weight. I still regularly see a dietician to monitor this and I have found that sustagen for kids has helped me put on more weight than I had been before adding this to my diet. I am currently 9.2 kgs and 84.5cm tall.

I also discovered something new and exciting the other week... It is called ice cream! I have never fed myself before - and I still haven't done it again yet. But as someone said to me we are coming into the right time of year to get lots of practice at it!!

video