Monday, August 29, 2011

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

Sunday, August 28, 2011

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

Tuesday, August 23, 2011

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...

Monday, August 22, 2011

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....

Saturday, August 20, 2011

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!

Thursday, August 18, 2011

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.

Tuesday, August 16, 2011

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 :)

Saturday, August 13, 2011

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!

Thursday, August 11, 2011

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!

Wednesday, August 10, 2011

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!!!