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!

 

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!

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!

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!

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!

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!

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.

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.

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!!

AIAHP

This is Chad from the Australian Institute for the Achievement of Human Potential (I last saw him a year ago). He came to re assess my development at the start of the month and writes a specialised programme to help me learn and develop new skills. Although technically I haven't progressed to any "new" levels of development I have certainly made some advances to achieving them. It was great to see his face as I went scooting past him in my bouncer- I may not be crawling but I certainly have my own means of transport!

My eating has really come along since I saw him last, and he couldn't believe the volume of food I was eating. I was hungry all the time! Even my general movement has greatly increased in the last 12 months. We already knew this but it ws great for it to be noticed and mentioned. My latest set of exercises are to help me to stay on all fours so I can get ready to learn how to crawl.

He seems to think my vision has improved quite a bit too- which is great.

If you would like to know more about the AIAHP you can visit their website http://www.aiahp.org/

Swimming

Nearly all the time I have been writing this blog I have been going to swimming lessons once a week. It is really good to be in a class with other children. I really love the water!

When I first started I was the best floater in the class! It didn't bother me one bit to have my ears in the water. It was rather relaxing in the heated pool. I was also really good at closing my mouth when we went under. I didn't like touching the edge of the pool one bit though. It was really an effort for Mummy to hold on to me and try to move my hands along the edge of the pool so I could do my monkey monkies!

Now though it is a different story! I am no longer the best floater. I tend to kink in the middle and Jess my teacher has to hold my head straight on her shoulder when I am floating. I even give her the odd kiss on the cheek... I am too busy to stop and float! I have also started to swallow the water when I go under every now and then. I have finally caught up to the active stage that all the others were at when we first started! I guess that is development for you!

I can open my left hand now to do monkies along the pool and Mummy only has to put my right hand on the edge for me. I can even hold on to my fish sinker that is given to me for when we go under the water. I can't grab it when I am swimming though, but I will take it when it is given to me and see if I can put it in my mouth on the odd occasion!

Horse rides on the pool noodle are my absolute favourites! I really love the giddy up horsey song. I used to laugh and smile when I was riding, now I am too busy licking the noodle! I sometimes have a tendancy to scream when it isn't my turn...

There are lots of other things I do at swimming too. The kids in my class have moved up a level now and they have taken me with them. There are a few skills that they are learning that are too hard for me but I am included and we so something similar but a little different when it is my turn.

I really love my swimming!!

We are smiling... Daddy was a bit quick with the camera!

HBOT - Day 35

It has been noticed by others that I am getting to be extremely vocal. I am just full of screams!! Excited screams, Hungry screams, Pay attention to me screams and Leave me alone screams. There are so many more even and they will all pierce your ear drums! I am also making different sounds, like trying to make an "m" sound or a "b" sound but it comes out more like a raspberry. I mostly do it when I am feeling proud of myself.

Again I noticed that there was a window in the chamber.

This is a photo of the inside of the chamber. You can see that there is a long window at the front and I have a tv on the outside that I can watch. To the left the creamy tubes bring my oxygen in and take my CO2 out of my hood. There is also a microphone on the left hand side. We have bumped this a few times lately and it sets off an alarm that says we need something. There is a call button we can press if we need to on the right hand side just below the head phones. On the right hand side there are headphones you can wear to hear the tv or you can just pull them out to listen through the speaker. We never have the headphones in so Mummy and I can both hear what is going on on tv or if someone from out side is talking to us on their microphone. There is also a little battery operated fan that we can switch on if it gets too hot in the chamber. With all the pressure we have in there it can tend to be a bit hot sometimes!

HBOT - Day 34

I am really starting to move myself around in the chamber. I spent a LOT of time tapping backwards and forwards between the front of the hood and my mouth. Hood, mouth, hood, mouth, hood, mouth. I did this for a long while. I was so noisy doing it that they could hear me outside! (There is a microphone in there though....) I was making a really good thud when I hit the plastic of the hood with my open palm. I was told by the ladies at FECS (Family and early chidhood services) that this means that I am starting to judge distance by working out how far something is from my mouth.

I could see Daddy again today too. I really like that there is a window there. Mummy is waiting for me to discover that there is two! How mind boggling would that be!?

AND talk about being STARVING!!! I was up again at 3am for 2 Vitabrits...

HBOT- Days 31, 32 & 33

I have had a good session and a bad session for my 31st and 32nd hour of HBOT. The first session I was happy... the second session I was cranky... and so it goes. Some days there are just some things I don't feel like doing!

Today was my 33rd hour, and I seem to have discovered a little something... Eyes are for looking.... I noticed today that there is a window in the hyperbaric chamber and that Daddy and Corey didn't leave. They were around my chamber just about the whole time! I could lean my head back and see Daddy and he would say BOO! I smiled at him and tapped my mouth, which is what I do when I am happy. I couldn't hear what he was saying but it was pretty clear through the glass! Funny Daddy! I kept looking for him from time to time to see if he was still there. Most of the time he was. Daddy even said that he could hear me talking to Mummy when we were depressurising. I have lots of new sounds I am making since I started HBOT that I need to practice!

We had a few other things to do at the shops while we were at Indooroopilly so we stopped in the food court to have some lunch. My goodness how could  anyone expect me to eat when there was so much going on around me! I couldn't help but look at everyone and everything! I hadn't really noticed anything before. No time for lunch for me while we were there!

For those of you that have read that I am having trouble sleeping you will never guess what... I had a bath, a big dinner and I am tucked in bed asleep with my sleep cd for company.... and it was only 8.30! Sssssshhh... I hope I can sleep right through the night!

Sleeping

Hmmm the last week or more I haven't been able to sleep in my own bed and if I do go to sleep there it isn't for long. I have been sleeping with Mummy and Daddy in their bed and this really hurts Mummy's back. I am going to try using my sleep cd again. It is a rhythmic composition that Mummy and Daddy put on repeat all night. It worked ok for me when we first got it. I wouldn't say it was wonderful but it seemed to help a little.
We got ours from the strong institute in the USA via download http://www.stronginstitute.com/42

Thera Togs

Today I received my very own set of thera togs. They are like a second skin that is going to hold my body in the right position. Hopefully they will give me a helping boost when it comes to balance, scissor legs and with my trunk control. I am going to wear them every day under my clothes and see what difference they make to my movement.

This is me asleep in them at FECS where I do some of my therapy. I will wear them under my clothes like a singlet

HBOT - Days 29 & 30

I have done 30 sessions now and boy I am a wriggle worm! I am super itching to get myself around. I am getting to be so full of movement! I tap just about everything I can touch and I have become very orally fixated, my tonge is always keen to see what there is that I can taste. My own left hand is a good one, so is the pool noodle and my swimming teachers swim shirt! I am getting comments from everyone about my now BIG VOICE and how active I am. I am so full of beans and giggles now. I am feeling great!

There has been a small error in the amount of sessions that were donated to me, there are only 10, not 20 like we originally thought. I am still going to try to get up to my 40 hours as fast as I can though.

This is the front of the hyperbaric chamber with all it's instruments and gadgets

HBOT - Day 28

For something different I went into the chamber with Daddy today! I was very active! I spent my hour tapping and kicking and rocking backwards and forwards and turning to look all around. I have never really kicked or rocked in there before. I spent some time giggling too! I have come to notice that the hyperbaric chamber is an interesting place- there is lots of new things for me to see.
There has been a tricky bit for the last 3 or so sessions when we are going under pressure where my ear starts to hurt a little bit. Stuart told Mummy that it is happening at the same pressure all the time, he suspects that my ears could be a bit waxy at the moment.

Daddy likes to tickle me so my ears don't hurt. I like it too!

There is lots to see in the chamber...

HBOT - Day 27

I really think I might have developed that new "sparkle"! There are a few things I have done that have been truly understood by myself and others. I DEFINATELY love the fact that I can stink people out with my nappies! I got Daddy with a sneaky one last night and it was HILARIOUS!! I was laughing and laughing - we all were. I knew exactly what was funny about that stuation! It was so good to laugh with everyone at the same thing. I think this could be the first time this has ever happened.

I am also practicing my speaking. Today I had my session of myofascial release with Andrea from the Andrea Plumb Clinic. I had a good old chat with her- it beats doing the work she wants me to do, I can tell you that! I haven't often done this really, but today I had lots I was trying to say. Andrea even noticed some of my new sounds. Mummy and Daddy had noticed ofcourse, but it is nice to hear some one comment that I was doing something new.

So back to HBOT..... I must say that I am getting back into the swing of being a professional Hyperbaric-er! Session 27 is all done! I am getting really good at tapping around, today I was talking to Mummy while I had my hood on. I even grabbed on the the microphone that is in the chamber (so people on the outside can hear what I am saying) before my hood was put on. I have just discovered that there are things I can actually touch in there! It seemed to be an extremely long hour today. I went to sleep. Mummy almost did too... shhh.

Stuart has been trying to take my blood pressure more lately. It was something that I would never stay still enough for him to do. Now I have let him do it twice. There was something really special about one of my readings today though... My resting heart rate...

Before I went in for my session today my resting heart rate was 127 beats per minute.  The average heart rate for someone my age is probably between 100-120 beats per minute. When I first started HBOT my heart rate was nearly 140 beats per min. It is because of my CP that I have a high heart rate.
When I came out of the chamber it was the lowest it had ever been - wait for it... 63 beats per minute!! Stuart was just blown away!! It had halved! I had 98% saturation so I was breathing in LOTS of oxygen. LOTS of oxygen to get through to the oxygen starved portions of my brain! And my heart is working less for me to get it there now.

Mummy knew there was something special about my "sparkle"... These are very exciting times....

HBOT - Day 26

In my last 5 sessions since I have started my new course of HBOT, I have been a bit cranky, I am still waiting for my nappies to kick in fully even though sometimes under my eyes is very dark. It doesn't seem like I have experienced the amount of changes I did when I first started.

My session yesterday was my 26th hour of hyperbaric oxygen. Today I explored lots more than I ever have before. I turned around as much as I could to see what there was to see in the hyperbaric chamber and the reach I had with my left arm was pretty good. I manouvered so that I could look at Mummy right in the face, and when we locked eyes she thinks she may have seen something... It was a new kind of "sparkle" in my eyes. A bit hard for her to explain... It was a knowing look, perhaps a look of realisation that I can do things, enjoy things. My eyes seemed clearer and brighter. It might seem silly I guess... after all, all I did was turn to look at her! I think Mummy might be getting a bit "impatient" for some more HBOT magic to kick in... She is too keen to see some more of the changes she saw in the first 20 hours.

All we can do is wait and see what the next 14 hours of HBOT will bring. Looking back I had my first increase of awareness around hour 10. We are approaching my 30th hour now so perhaps there might be a whole new flood of skills I can develop!

This is Daddy and Me while Stuart is attempting to get my blood pressure reading!

HBOT - Day 25

Today was such a busy day! HBOT was my third therapy this morning!

I didn't really have any trouble today and I seem to be getting back to my old HBOT self. I tap around inside my hood that I wear. I am exploring with my tapping further than I ever have before. I used to only tap in front or to the left side, now I nearly tap all over even on the top. My hood  is like a little bubble that seals around my belly and my 100% oxygen comes in through tubes. It means that I don't have to wear a mask. Half way through I went to sleep and Mummy had to wake me up to take my hood off. I had a good talk with Mummy when we were depressurising, (this is Mummy's favourite part!) after all there is lots to say after being in there a whole hour!

I have dark circles under my eyes too. I think this is the easiest way to see if HBOT is working.

HBOT - Day 24

Today I was relatively happy to go into the chamber. I was pretty relaxed and I slept for a good part of it.
I sure am hungry these days though, I am ploughing through my food and it never seems to be enough! I am also sleeping much better too :)

Conductive Education

Last week I went for a 2 hour trial at Conductive Education Queensland at Coopers Plains. I must say that it seems to be the best sort of active therapy I have done yet. I didn't like that Annette (the lady in the photo) was moving my arms and legs to do things, but every now and then I got a flicker of a look in my eyes when I did something I didn't know I could do- THAT'S what my legs are for... WOW if I hold on I don't fall over... I WANT that red toy... little things like that.
If I needed to get around the room for different exercises, I was made to roll. Everyone sang lots of songs which made what we were doing more fun. Mummy only knew a couple of them, so once we learn them we will be able to join in more with the other families and their singing.
I really hope we will be able to go back, it is in a little bit of an awkward place transport wise for Mummy and me, but we are going to see what we can work out.

I lean, I lift, I step

I can see Blaisie!

HBOT - Day 23

Well I was irritable again today. It seems it is taking me a bit to get back into the swing of doing this again. I have been making myself stiff and straight and it is hard to sit, especially when I just want a Mummy cuddle. You can see by my shirt that I am pretty dribbly in there. I like to amuse myself by putting my shirt in my mouth. Stuart did manage to take my blood pressure today after we came out. It's not something that I usually let them do... I have to stay very still, and where's the fun in that !?
My dirty nappies are getting back in the swing of HBOT now! 3 or 4 in one day! Got to love that Mummy!!

Finally, all done!

HBOT - Day 22

I discovered the cold hard edge of the hyperbaric chamber today. I reached out with my left hand and tapped it a few times on my way in. I caught the giggles again today, but then I started to get cranky before we had reached full compression. Stuart released some pressure from the chamber and let me sit for a minute before we continued.
It was pretty non eventful. I tapped around inside my hood all my usual things. I was a little bit cranky and I got a little bit hot in there today I think, my hood started to fog up- normally if this happened we would turn the oxygen off and remove the hood to let the warm air out, but this happened right before the end so we left it on.

The dark circles I get below my eyes from HBOT are back now too. Just waiting for the dirty nappies that come with it!

We said good bye to Stuart and caught the train home. When we were on the train Mummy noticed my left nostril was a little bloody, nothing major, but any surprise like this always gives mummy a bit of a start! Looking back this happened to me on my 4th HBOT session too...  I never did find out the cause and it didn't happen again until today. It is something to monitor when we finish this series of HBOT and are going back for another block of treatments. Just to see if it is connected some how.

This is my brother Corey!

Hello Corey....

Let me give you a kiss!



HBOT - Day 21

Well I am back in the saddle again and yesterday was my 21st HBOT session! I was very happy to be going back to HyperbaricWorx!

When the chamber was pressurising I got a sudden burst of the giggles! It was so contagious that Mummy caught them and then Stuart (who was pressurising us) caught them too! I did my usual tap, tap, tapping around on the inside of the hood. I got a bit restless after a while today - I think Mummy needs to remember to make sure I have a nice full belly before I hop in the chamber. I was a little bit cranky at times and there wasn't anything that could be done for me whilst I had my hood on!

The thing Mummy did forget though - and did not miss mind you - was how hungry this makes me. I was up at 3.15 this morning for two vita brits. This is the quickest and easiest thing for Mummy to get me at this wee hour of the morning!

This is also an interesting piece of information that I have come across too, I do my HBOT at 1.5 ATA :)

Hyperbaric Oxygenation Increases Patients own Stem Cells By Eight-Fold


... 2 hours HBOT at 2 ATA; doubles the patients own circulating stem cells


... 40-60 hours HBOT increases circulating stem cells by 8-fold (800%) !!

If this is true it is no wonder HBOT can do amazing things!

In between HBOT 20 and 21

Well it has been a little while now since I have completed my 20 hours of HBOT and because of the generosity of a special lady (we don't know who she is- But we truly thank you!) I am back to it again!

In the time since I finished my 20 hours of HBOT I have become more alert, my appetite has remained steady and my dirty nappies have really slowed down, sometimes way too much and Mummy has to help me to do one. I have also gained a little sense of humour... like when I bite someone I think it is funny! Not so funny for the person I got my little razor blades into!! But I don't really do that too often now, I have discovered that Daddy's raspberries are funny, which is much better. I can push up on all fours pretty well if someone gives me a tug on the shoulder, and my balance is getting to be so good that when Mummy sits me up I don't fall over straight away. I can sit for a pretty long time! I can even push right up from all fours and kneel or rest on my knees - Not so good with the balance for this one I'm afraid! My elbow propping came as a surprise to Mummy when I did it for the first time. Apparently this is the step I can do before I can sit up on my own! Exciting times!!
Normally I don't use my right arm at all but now sometimes I can stiffly move it as well.
I can swat at the shower curtain and push it to one side with my left arm when I am anxiously waiting to hop in. It is my favourite time of the day! AND most recently I can put my left hand out to do a semi "monkey" on the side of the pool when I am swimming - I LOVE swimming too! I don't support my own weight on my arm of course, Mummy holds me and moves me along, but it is a BIG difference to the clenched up little fists and tight arms that I used to have for monkeys. I have been sleeping pretty well the last few weeks too.

I have also learned that I have a voice! I have a couple of new sounds, no words yet and the monster of all screams!!!

HBOT -Day 20

I have finished my block of 20 hyperbaric oxygen treatments for now. The recommended standard treatment for this therapy is 40 hours (this doesn't mean that you will  be cured in 40 hours, it means that it works best if done in blocks of 40), and I can kind of see why. I have started to notice that my eye sight is getting to be pretty good I think, I can hold my eyes nice and straight to look at things and even to follow them when they move. There is no way anyone can sneak into the room with out me knowing now! Mummy thinks that my pupils seem to be bigger in general now. My digestion is really good too, new and different foods don't seem to bother me as much now and yes, the dirty nappies are still pretty good!

My swimming teacher noticed that I was moving my right arm with excitement in the pool the other day and I am much more vocal than I used to be. I let her know that I am not finished with that pool noodle thank you!

It will  be sad for a while to not go for treatments. Stuart and Paul from Hyperbaricworx are always really happy to see me and excited to hear what I have been up to. But I will be happy for the rest for now. I am sure we will go back for more- hopefully towards the end of the year.

HBOT- Day 18 & 19

Hello Friends! I am getting to be a professional hyperbaric-ee. I hop in and away we go. Everyone has noticed that I have been watching TV more while I am in the chamber. My eye sight seems to definately be better. I only have one more session in the chamber on Thursday 16th June. Then we will wait and see where therapies take me next :)

HBOT, Days 13, 14, 15, 16 & 17

Phew, those last few sessions flew by. Sometimes there just aren't enough hours in the day!! Some days I cried.... Why do you have to get four 2 year old molars at the same time? It makes me miserable and I just don't want to do anything. Other days it was so good I went to sleep! It is so nice and warm in the chamber and I get cuddles for an hour. Just me and Mummy or me and Daddy.

I seem to have plateaued skill wise. I haven't noticed any new progressions. My eye sight is better than it used to be I think, I am still hungry all the time and the dirty nappies have dropped off slightly. There are still more than before I started this treatment though.

Most of the time I reach 100% oxygen saturation and my heart rate isn't as high as it used to be. I am more relaxed.

I only have 3 more sessions to go and then I will have a break for a while and decide what I am going to do next.

Me and Mummy getting in the chamber...

All settled now and watching tv

An interesting study about HBOT from 1979!!!

I just wanted to share this report with you. I thought it was interesting :) I have added comments relating to my progress in blue.

CLINICALLY OBSERVED REDUCTION OF SPASTICITY IN PATIENTS WITH NEUROLOGICAL DISEASES AND IN CHILDREN WITH CEREBRAL PALSY USING HYPERBARIC OXYGEN THERAPY

MACHADO, 1.J> Neurological Advisor of "Centro Brasileiro de Medicina Hyperbarica" - Rua Bento ale Andrade, 70, Sao Paulo, Brazil.

Our personal experience with hyperbaric oxygen therapy (HBOT) in patients with neurological diseases started in 1979. From theat time we have used it as an adjunct to physiotherapy in the rehabilitation of these patients. In the first four years, we worked with patients suffering from ischemic cerebral vascular accidents, and verified that the clearest and most common effect of HBOT during treatment and soon after it, was a reduction of spasticity. (Andrea my physical therapist has noticed this already in me. She went to work on my neck on Monday 23/5 after 10 sessions of HBOT. She was very surprised, it didn't have much that needed loosening and she hadn't worked my neck for a while) This was obvious clinically and functionally in hemiplegic patients and preceded motor improvements. During 1984-85, we accumulated experience with the HBOT in other pathologies, including head injury, anoxic-encephalic disorders and Multiple Sclerosis patients. The same results were found. We then decided to investigate the effect of HBOT on children  with cerebral palsy- another predominantly spastic disease. In 1985, we started working as neurological advisors for the "Centro Brasileiro de Medicina Hyperbarica" (CBMH) and selected a group of 10 children with spastic cerebral palsy who may benefit from HBOT, as they had respiratory difficulties, brocnchitis, repeated pneumonia and bronchial asthma. An HBOT treatment program was devised for this group and we observed the same reduction of spasticity in these patients. Also there was improved respiratory function, the bronchial complications disappeared and this was confirmed clinically. This initial success then led to other problems as the physiotherapists sent us other causes to be treated. The parents of affected children contacted us to try HBOT on their children. We let them know that we could find no references to this in our literature, and such a therapy, while harmless, could be unnecessary or even present temporary side effects. However, despite this, they insisted on trying it. We then looked for assistance from other specialists, including those in our university, in order to conduct scientific research on the matter, but had no support. The CDMH is a private medical office, one of few hyperbaric medicine centres in Brazil. We have commercial or corporate participation in the centre but we have since had to interrupt our collaboration, because of problems generated by accepting these patients. We found that HBOT is little known in Brazil and is considered to be "alternative medicine" by physicians, who only recognize its merit in respect to the treatment of gas gangrene. From January 1985 to April 1989, 230 patients with cerebral palsy were treated with a series of HBOT (20 sessions of 1 hour) (This is the same as I will be doing and have just finished my 12th session). In 218 (97.78%) patients, there was a clear reduction of spasticity (nearly 50% less). Frequently, clonus or the Babinski sign would disappear, with better plantar support and the abolition of the leg "scissoring" (The leg scissoring is just starting to change for me). Only 12 patients (5.21%) remained practically unchanged. They were extremely severe cases, with profound cerebral atrophy. Follow up of patients over a period of 6 or more months after HBOT was only possible in 82 (38.65%) patients as most of them did not live in Sao Paulo. We noticed that 62 (75%) patients had a persisting reduction of spasticity and better motor control. In addition, the parents reported other types of improvement, such as better balance, the child being more attentive, more "intelligent" with a reduced frequency of convulsions and episodes of bronchitis. Perhaps we have been encouraged by the patients, to place attempts at therapy before research, but we do believe that oxygen at higher dosage plays an important role in the rehabilitation of neurological patients, and has a favorable effect on neurological development of children. We expect subsequent studies will confirm this.

HBOT - Day 12

Today was a good day for me, but Mummy is getting sick and it hurt her ear terribly. She had to ask Paul to stop and he let a bit of pressure out of the chamber before we tried again. We did get there, it just took 5 minutes longer. They will go slow if someone has trouble with their ears. They won't rush you through pressurisation. We were watching ABC 2 on tv today and I just loved Play School! I had my eyes glued to the tv! Paul asked about my weight, he had noticed that my face is looking chubbier... what do you think?

And again I am looking at the camera :)

Mummy doesn't think we are going to go to our session tomorrow (Wednesday 25th May). I will wait for Daddy on Thursday, he isn't sick.

HBOT - Day 11

Well the start of another week, my third week of hyperbaric oxygen! I have been weighed again and I am 8.4kgs. This is the heaviest I have ever been and to put on just under a kilogram in one week is an all time record for me! But today I was miserable. Not much to report. I cried for an entire hour. The whole way through :(

This is me watching tv in my bubble, on a day that I wasn;t crying...

HBOT- Day 10

Two weeks down and another two to go! Today when I was getting set up I had my legs straight and my ankles together. I only crossed them over a couple of times today. Everything was really good again. I was happy for the first part and spent my time tapping around inside my hood or chewing on my right hand! I still use my left hand to put my right hand in my mouth most of the time, but on the odd occasion now I can bring my right arm up to my mouth. The second half of the treatment I was sleepy, I cuddled in and went to sleep. I was not happy for this session to finish- They woke me up!

Daddy and Corey were here again today and I had so much to tell Daddy when I was done! Corey ran over and gave me a big kiss and cuddle and told me "You did it! You did it Blaisie!" It is wonderful to have a brother that loves me so much and thinks I can do anything! He makes me feel really clever xo

This is me hopping in the machine for session 9 (that is Stuart helping). You can see how my legs cross over, this seems to be getting better now

HBOT - Day 9

Everyday before I go in the chamber I have my blood pressure, heart rate and oxygen saturation levels taken. I don't sit still long enough for them to get the readings before  I am treated, I wriggle too much and sometimes my toes are too cold to get a saturation reading. The reading will work pretty well when I am relaxed and have warm feet when I am done. The HBOT works well to get my circulation flowing, transporting all that wonderful oxygen through my system and that is what makes my toes warm for the reading. I don't sit under blankets or anything :)

Today when I was getting in all I wanted was a cuddle and a drink of milk. It was such a hassel to put my seal and hood on! When we were all settled and pressurised and my oxygen was flowing through, I started to tap around the inside of the bubble with the palm of my right hand. I did this alot today and I didn't cry one bit while I was in there, so the hour went really quickly. In no time it was time to hop out. I didn't have much to say about this session. I was pretty quiet.

Daddy and Corey came today, so I will have lots of new pictures to show you all, and tomorrow I will start to make a video of a treatment for you all to see!

Getting my blood pressure reading done.... I didn't give it to them though!

 This is the little deivice that takes my heart rate and oxygen saturation levels.

 If you are an adult they put it on your finger.



HBOT - Day 8

Session 8 started the same as all the others. Paul commented again how much harder it was to get me into my seal and I was pretty happy to be there again.
We pressurised to 1.5 Atmospheres (which i found out today is the equivilant to 15 feet- technically it is not a dive though) I had my hood put on and I was a cranky pants! It is lots of work doing this everyday and alot of sitting around. Pram, train, hyperbaric, train and home. It wouldn't have helped that I am getting 4 teeth at the same time either. On the occasions that I did stop crying long enough to take a breath I tapped around on the inside of my hood and watched tv for a bit. Mostly I was miserable with my fingers in my mouth. We had to stop once to take my hood off so I could settle and cool down a bit. Inside the hood can get really hot as I'm sure you can imagine if you were howling all the time while wearing it.
When it was over and I could get my cuddles I had alot to say again. After all I have hardly seen anyone for an hour. I think I might be learning to make a new sound too. This will be the 3rd different sound I will be able to make.

There are two chambers at Hyperbaric Worx. They look just like little spaceships!

*********************

HYPERBARIC WORX ARE HAVING A PARENTS INFORMATION DAY ON 29TH MAY IF YOU WOULD LIKE TO SEE HOW EVERYTHING WORKS.

IT IS ALSO AN OPPOTRUNITY TO HEAR OTHER PARENTS EXPERIENCES WITH HBOT.

PLEASE CALL TO LET THEM KNOW YOU ARE COMING                  1300 365 186

THEY ARE AT INDOOROOPILLY

*********************

HBOT- Day 7

Today once again I am really happy to go in the chamber. I give my excited kicks and Paul mentioned that he thinks my legs are getting more movement. It is getting harder for him to slip me into my rubber seal! (I have a latex ring that seals around my belly and the hood clips onto the top of this) My legs are further apart than they usually are. I normally cross them over in a tight X or a V. If you haven't seen this before it is like I would be standing on my own feet or my left foot is my right foot and my right foot is my left. It is a baby reflex that I haven't out grown yet, but perhaps I might be starting to. I dozed on and off again today- And so I should... I have been awake since 1am!
Today I was really hungry again, I ate a banana right before I went in and ate just about a whole 200g tub of yoghurt when I came out, and then a bowl of vegetables an hour and a half after that. Eating and drinking so close to entering the chamber pressures hasn't troubled me at all. I have read that it might, but it doesn't effect me. My chewing seems to be a bit better and I am tolerating meats mashed in my food now too. Onwards and upwards with my eating!

HBOT- Day 6

The Friday before I started HBOT I had an appointment with my dietician, not because I was starting this therapy- it was just my scheduled check up. So I know for a fact that before I started with hyperbaric I weighed 8.2kg (with my winter clothes on) and I was 80cm long. Mum weighed me on Sunday- again just because it is something she does from time to time, just checking on me. To her surprise I weighed about 7.5kg!!! I had no clothes on so if my winter clothes weigh 300g I have still lost 400g in one week. EEEK!!! Normally it would take me months to put that weight on! I am very glad that I had my appointment with the dietician last week and not this week...

My appetite has increased ALOT in the last week. I estimate I eat around 700g of food a day now, so in the last 9 days since I started HBOT I have eaten 6.3 Kgs of food. You would think I should have put on weight rather than losing it wouldn't you? My reasoning for my weight loss is..... my dirty nappies! It makes so much sense! SO now you can get some idea of just how many there have been in the last week or so.

My 6th session was pretty much the same as all my others, I am happy to go in the chamber, have my hood put on. I am a little bit cranky, but not too bad and I still have lots to say when we are de pressurising. Mummy noticed that I get pretty dark under my eyes after I resurface and she mentioned this to Paul (who runs the chambers). He said "That is just detoxing".... I think he was a bit surprised that this was happening so soon, because he mentioned it to Stuart (another person at hyperbaric worx). It is a really good thing to be happening. It shows that HBOT is working for my digestive system. Hence (once again) my really smelly nappies and the quantity of them. I must have heaps of toxins I need to get rid of. After being cleaned from the inside out my body should be ready for "restocking" and I should start to gain weight. Lets wait and see :)

You might be able to see that my vision is improving. I am looking up at Mummy when she takes a photo :)

HBOT- Day 5

Five days down!! A whole week of Hyperbaric Oxygen has been done! (And my nappies are still smelly, smelly, smelly!)
Today when I was on Mummy's lap waiting to go into the chamber I was kicking like crazy! I was so excited!! It was like I couldn't wait to go in! I was pretty good too. I sat happily for most of the session. I normally have cool toes- I did when I went in the chamber, but when I came out they were warm! It was enough to make Mummy comment to Paul who has been monitoring our sessions and he said that HBOT was great for circulation. He put a little machine on my toe (like the ones that doctors put on adult fingers) and it gave a reading of 100% oxygen saturation. I had oxygen flowing from my brain right down to my toes :) I don't normally stay still long enough to have the reading done, but this afternoon I was happy to let it be there.
On Fridays I have swimming lessons (so I had one before I came for my fifth session) Jess my teacher commented that I was looking at her during the lesson, this was completely new for her. She didn't know that I had been having oxygen, it was just a passing comment, but a welcome one! I am glad she had noticed!

Mummy has noticed that my pupils seem to be more dilated, Daddy has noticed that I will flinch now if something comes towards my face, and you just can't sneak into a room anymore with out me wanting a pick up. I think there may be an improvement with my vision, but honestly it is hard to say. I notice when the iron lets off a big puff of stem too. I do seem to be more aware, and happier to go to sleep at night.

The people at Hyperbaric Worx seem to think the next thing that will happen to me is that I should start to put on weight. (So for the record I am 8.2kgs and 80cm long.) They have had success with fixing digestion problems and they think the quantities of dirty nappies I have been doing are a good sign that the bacteria in my digestive system is being fixed up. They are not at all surprised by the smell either :)

HBOT- Day 4

Today when I went in the chamber I dozed on and off. I was really sleepy, so I hardly looked at Mummy at all. Half way through I woke up. I wriggled around so Mummy could see me and I had a bit of a dried up bloody nose... It wasn't much and I don't know how it happened. Mummy took of my hood and cleaned it off. It didn't bleed.  I think maybe I might have scratched it myself... The pressures are always the same as the day before - so 1.5 atmospheres. Though it did give Mummy a bit of a fright!
I seem to be happier in general now too. I can do happy little squeals and like the day before I had HEAPS to say when we were de pressurising and I could cuddle in with Mummy.

You can see a tiny bit of my nose. It really wasn't much but I thought it was worth mentioning

HBOT- Day Three

Today I had another session of HBOT. I don't mind hopping in the hood and chamber when I get there. I even let out a little excited squeal! While I was in there I rolled my head from side to side trying to see out some windows and to look at Mummy while I was at it. I did get pretty stiff sitting in there today though and Mummy was bouncing my legs and rubbing them. We have been going to 1.5 atmospheres before I start having oxygen pumped to me. The pressure doesn't bother my ears too much. I give my left ear a bit of a flick with my hand sometimes so we pressurise really slowly.
When the time was up and Mummy took my hood off while we depressurised - gee I had lots to say!
I have been sleeping better too. Last night I went to bed at 9.30 ish and slept right through to 8am!!!
We are going back again tomorrow for another hour. And yes... the dirty nappies are still coming :)

This is me after my 3rd session. I am starting to realise I have two hands... but I sort of discovered this secret before we started :)



HBOT - Day Two

WOW in the last 24 hours I have had ALOT of dirty nappies! I know that's  not really nice news to share but this is really good news for me! :) I guess Hyperbaric Oxygen can help with that too....

Today I went with my Daddy. I didn't grizzle at all and almost went to sleep! We went down deeper than we had the day before- so the concentration of oxygen I received would have been higher. I don't expect any extraordinary changes straight away but it is going to be exciting to see what will happen in the long run with this treatment. 18 more to go!

Hyperbaric Oxygen Therapy (HBOT) Day One

This is me and Mummy in the Chamber- Day One

Yesterday I had my first hour of 20 hours of hyperbaric oxyen therapy (HBOT). I have to wear a hood that covers my head and seals around my waist. It has 2 tubes of the front/side that let 100% oxygen in and removes all my carbon dioxide. I had only had a 15 minute trial the week before. I was having a terrible time with my teeth, I had a runny nose and just cried all the time.  I was feeling so awful I just wanted cuddles :(
One week later I tried again. I got one full hour of oxygen and I only grizzled slightly. It wasn't nice to stay still for so long. It can get very hot in the chamber so even when it is cold outside I still only wear a short sleeved shirt and a pair of shorts. I even have a fan inside. There is a TV that we can watch or we can bring a DVD to pass the time.

At the moment my eye sight is still pretty poor. I can roll over but cannot sit or crawl. I can't speak and I can be fed fork mashed foods... and I am a terrible sleeper most of the time... So there is lots to learn to do!

Hyperbaric treatment puts a high concentration of oxygen in my blood that can travel through to the damaged parts of my brain and start to repair them, this should help for me to create more neuro pathways so I can function better. It can also be good for vision, wound healing and a whole lot of other ailments. They even say that it will keep you looking youthful :)

I have attached a link so you can see diagrams that explain all this http://hyperbaricworx.com.au/whatis.aspx

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!