4th and final procedure

Laying in bed the other night with Sabine by my side I thanked her for coming with me and being such a great support, I apologised for being grumpy sometimes but I'm human and I make mistakes. I know every parent thinks there child is the most special, but just work with me for 1 minute, I said to Sabine 'out of all the little girls in the world how did I get the one that was the most special?' and she responded ' Because you have a disability mum God knew you needed someone just like me' Out of the mouths of babes. Both mum and Sabine have worked really well, we've had our ups and downs but that's to be expected, I love and appreciate there support :-)

On Wednesday we went to the other hospital for my final procedure which was an epidural catheter into my back for 2 days. I was wheeled into theatre, transferred onto the table, rolled onto my left side and curled up into a tight ball 'assume the position' I was thinking. As you can see in the picture the catheter was taped to my back and a port was put at my shoulder to administer the cells. Once back in my room I layed on my back for 4 hours with 2 bricks under the foot of my bed to elevate me. I love it when we discuss the 'brick measurement system' with other patients, how many bricks did you have 1, 2 or 3!

Because the procedure was shortened by 1 day Dr Ashish gave me more cells each time. Sometimes I could really feel pressure building up in my head like when you are landing in a plane. The first lot of injections focused on my middle section and it was almost like when you get a stitch playing sport in my chest and tummy, but this passes after about 5 minutes, so I'm not worried anymore.

In the evening I rolled onto my right side, then the next day my left side then the grand finale was on my tummy. Each time I lay still for 2 hours after the cells had been injected.

They have taken a slightly different approach this time and I'm so grateful that Dr Geeta and Dr Ashish try something new with me. I've had a lot more injections this time, 2 in the morning 2 at lunch and 2 in the evening focusing on my shoulders, biceps, triceps, hands, face etc Injected directly into my veins and each week I've had an infusion, plus the 4 procedures so you know what, I think my cup is full!

When I return home I need to be more careful riding my bike. As excited as I was that I jumped 2 levels I actually had done some damage to my calf muscles so luckily now they are feeling better, I'm so stupid sometimes I just got excited that I could do something new and pushed myself to much. So I'll focus on lighter level and less time, physio 3 times per week, hydrotherapy 2 times a week and OT once a week - think that should cover it!

I actually feel different coming home this time. In the past I haven't wanted to leave but I feel like I've grown in some way, maybe because i understand how it all works and I'm giving everything I can. I've had some small changes in my shoulders and I'm so excited about getting home, living life and letting the cells grow.

Sabines performance Nutech Mediworld

On Friday Nutech Mediworld celebrated its 3 year anniversay. Dr Geeta put on a huge party, the Prime Ministers wife was invited and the staff put on dance performances. Sabine was asked to dance and said yes. I was worried that she'd get stage fright....oooh not my girl, she had the crowd cheering for more, every time she wiggled her hips they cheered louder, she was amazing and I was so proud of her confidence. I've had nothing but praise for sabines ability to fit in and hold a conversation with any person of any level. In fact when the staff come to check on me the next question is 'where is Sabine'? Several have suggested to me that I can't return with out bringing her back with me. Here is just 1 minute of her performance.

Lollies or Chocolate?

Picture of Sabine helping the nurse take my blood pressure.
I had my procedure on Monday as planned. I was wheeled into the theatre to see Dr Ashish and he asked me which shoulder I'd like to have injected, how on earth could I make that decision, I wanted both arms!! It was like trying to choose between chocolate or lollies! He went on to explain that he would be injecting both but just 1 shoulder at a time, ooohhhhh, alright then! So I decided on the right. Dr Ashish injected through my underarm and as he hit the nerve I could feel my hand jump. He then injected the local anaesthetic and then followed with the stemcells. It was all over in 15 minutes. I was put back in my chair and taken to my room where I had to lay on my left side for 1 hour. My arm was so numb, just like when you've been asleep on it, 2 hours went by and it was still numb, I started to worry abit. I waited another hour and still couldn't move my arm or feel anything so I called the Dr on duty and she explained that the anaesthetic would last for 8 -10 hours! I didn't go to physio in the afternoon and just decided to rest, I felt quite wobbly on my feet even though it was my arm that was numb. It actually wasn't until the next morning it felt better. I think it will be interesting to see what changes occur over the next few weeks after this procedure. Tomorrow I will be back into theatre for another procedure, this time on my left shoulder. Next week I'm on the theatre list for a 2 or 3 day procedure at the other hospital. I found last time 3 days was exhausting so Dr Ashish is thinking 2 days will be better. Its not like I'm missing out on less cells as they are injecting more this time than ever before, intra muscular and also large injections just straight into the veins.
So I guess the question on every ones lips, 'are you feeling anything'? I walked today a little further (no burning at all in my calf muscles or spasms in my left calf) and Shivani has introduced a new exercise where I stand and put my hand on a wall wheel. I wanted to put a weight on it today as I'm just pushing the weight of the wheel which is very little, but she said no, so I asked for just a little bit more weight for just 5 repetitions instead of the whole 10, but she said no, so how about just 5 more pushes of the wheel to be 15 and she finally said yes!
I think my right shoulder is getting a bit stronger, but that's while I'm here and getting the cells the real test comes when i get home back into life doing more things for myself and no stemcells.
Todays Wednesday and I'll take Sabine to yoga when she returns from school, she just loves yoga so looks like I'll have to find classes when we return home.
Thank you so much for the emails and comments on my blog, its so wonderful to have contact from home, I appreciate it more than you realise xx

Just keep swimming!

To express how I'm feeling I'll quote a line from the movie "Finding Nemo: - 'Just keep swimming, just keep swimming' Thought that was better than trying to speak whale! I had my first procedure on Thursday it was a Cordral block which Dr Ashish is now doing at this hospital. I had this procedure on my first visit and it was extremely painful, lets just say I wasn't going into theatre with out a local anaesthetic and Dr Ashish agreed - phew! It really is just a glamorous procedure (she says tongue in cheek!) I lay on my tummy with a pillow under my pelvis, bum in the air slightly and Dr Ashish injects the stem cells into the base of your spine, all I needed was an apple in my mouth and I could have been a Christmas pig!! No pain this time and the theatre staff transferred me onto a bed in a room on the 3rd floor, 2 bricks under the feet of the bed to raise it up and I lay there for 4 hours, with Sabine right next to me, on top of me, feeding me tea through a straw and biscuits too, she was very attentive and caring. I've added the picture. I felt fine the next day so lets just see what the cells can do for me.

Sabine started her first day at an International British school on Thursday, she did 3 hours then Friday she attended 10 - 3.30 and absolutely loves it. I was bit apprehensive but she kept nagging me and so I let her go and it was well worth it. Shes doing all her homework and learning Hindi then in the afternoon she participates in craft classes, so shes back there again tomorrow (Monday)

I had another IV yesterday and had a high temperature (100.5) and aching body, I really hate that feeling but I know in a few hours it passes, so Sabine curled up in bed with me ate popcorn and watched a movie. I had a big cry Saturday night (once sabine was asleep) my body felt really tired after the IV, tired, sore, angry, sad....so what else to do but just take a minute to feel the emotions and then move on from it, trying to welcome the new stem cells into my body so they have the best environment to grow.

I was feeling better today so we went to City Walk to have lunch at Spaghetti's and do some shopping.

Tomorrow it all starts again and I will be having another procedure they will inject into the Brachial Plexis, I had to google it as I had no idea! Its something to do with the shoulder, as you can see I'm still not quite clear but I'll know more tomorrow. Tonight the nurse will inject into the palm of each hand (you know that fleshy bit near the thumb) hopefully that will help my hands. Actually the other day the nurse came in the morning with 2 injections and asked where did I want them? I don't usually get a choice so I was excited and confused, so many muscles so little time!! Decided to go for the Dorsiflex Muscle, its the muscle that brings the foot up when you step so you don't trip over your toes, which I have to wear ankle foot orthotics to prevent this. I've never had this muscle injected so lets see what will happen - we can only try :-)

Another day in paradise ;-)

Sabine and I at the Taj Mahal

It was a long day but it was worth it to see the look on Sabines face. Who better to see The Taj Mahal with, a monument to Love, than my beautiful daughter (and my mum too)

Ok, enough of the mushy stuff! Every morning I've been receiving injections in both shoulders and on Sunday I had an injection in the palm of my hand, near the padded bit of the thumb (if that makes sense!) which was rather an unpleasant feeling but lets hope it helps. Dr Ashish injected my face yesterday this time about 1cm above the corner of my lips (each side) hopefully this will make my smile a bit straighter. On my first trip I met a guy from Perth, Matt and his mum Marilyn and he is here at the moment for his 3rd round of treatment. Marilyn mentioned to me that she noticed my face had changed, it looks different, so thats good.

I've been working with the OT each morning which has been great, shes really working intensly on my hands and my face (its a bit like shes massaging my cheeks and it makes Sabine laugh with the funny faces I'm pulling!)

I'm still doing the same routine with Shivani and in the afternoons too, standing at the wall and reaching up as high as I can, then kicking a ball while standing (I gave to hold onto something) then walking.

I'm told that I will go for a procedure this week probably just a 1 day. Nothing else to report, no news is good new, I guess. Oh..there was one thing yesterday we had journalists from CNN and ABC TV and a couple others for a press conference as Dr Geeta is releasing a book on her findings from 75 spinal patients, I wasn't part of the interview because I have MD and really I'm discovering this treatment works much better for spinal patients, its only a 'bandaid' for someone like me, but at least this bandade has 'The Wiggles' on it so every time I look at it, it makes me smile and I have hope. You just can't bend over and take it every time life tries to screw with you and life has a way of challenging everyone, I have to remind myself constantly of that when I feel like a little girl stamping her foot who just bloody wants what she wants.

So far mum and Sabine aren't sick wooohooo!!

Back on track

I'm pleased to say I'm back on track with my walking, (my confidence is building...phew!) even though when I'm standing I still have a burning sensation under my right foot and up the calf muscle. The muscle has grown in strength and so its quite tight, but the more I stand on it and Shiviani helps me to stretch it gets better. Today I started with an Occupational Therapist, she is new here. She just did an assessment on me today and on Monday will be working on my hands and arms, so I'm looking forward to adding something new each day ontop of the 2 physio sessions. I'm actually starting to feel (now don't get excited just yet!) some changes in my right shoulder. When I travel I use a manual wheelchair which doesn't have arms. After a while both shoulders ach because my arms almost hang out of the shoulder socket and this is uncomfortable. I'm noticing this time that as I sit I'm not getting that same aching feeling. Also in physio when I'm standing I'm doing arm exercises where I raise my arm outwards and it is rising up a bit higher and not quivering so much, which is good as it gives me something to work with. The changes that take place will just be 'bit by bit' and I find that in itself a challenge.
I've been talking to the other patients and its been a great emotional support, especially how they cope when they return home after treatment and they go through the highs and lows just like me. As I described it, I'm just like a duck, smooth sailing on top but I'm paddling like shit underneath just to keep a float!!
I've just had an IV of stem cells so I'm waiting for the affects to kick in, mum is down stairs in the common room playing a game with sabine and lunch will be here soon. Sabine is doing so well. At physio yesterday there is a 3 year old boy having treatment and the therapists have been trying to make him walk with his walking frame (its such a tiny frame) he cried and screamed, Sabine went over to him and chatted for a few minutes then handed him the frame and said 'here take it' and he did! The therapists were so pleased even though Sabine didn't know why it was so hard. This isn't an easy environment to be in for anyone and Sabine is really taking it in her stride.
Tomorrow there isn't any physiotherapy so we have arranged to go to The Taj Mahal, Sabine is so excited because she has been learning all about it at school.

Arrived in 1 piece

After a long flight we arrived back at Nutech Mediworld. Sabine was such a great help, even though she was tired as were we. There was a bit of confusion with our room and we were on different floors for the first night, but the next day this was rectified and we now have adjoining rooms with mum. Nora is my carer and she arrived at 9.30am with a beautiful rose for me. She has very good English which is a bonus because I have no Hindi! I went down to physio at 11am and Shivani did an assessment. Some muscle groups have stayed the same, my right leg is a bit stronger and my right hand is slightly weaker. In the afternoon I went back to physio to do my walking which hasn't changed over the last 3 months which in reality is a good thing but it would be good if I'd had some improvements. I had a fall about 2 months ago and my confidence has taken a battering so I haven't been doing alot of walking but have been going to the pool and walking to try and get my confidence back. So shivani will take it slowly with me, just short distances to begin with (20 steps) I had two injections on my first morning in each arm then in the evening I had an injection into my vein and then at the base of my neck on each side. Because I'm here for 1 month they dont waste any time getting into it. I spoke to Dr Ashish last night and shared my concerns and basically that I just don't get the whole thing. I have an exercise bike at home its a Motormed Bike that i sit in my chair and pedal it has a motor which can increase the intensity like you are going up hill. Before my second treatment I would pedal on levels 2 and 3 for 40 minutes, now I can pedal on levels 4 and 5 for 45 minutes which is actually quite a jump as I've never cycled on those levels. I explained this to Dr Ashish and he was pleased but I just don't understand why it doesn't relate to walking. He explained to me that the cells only live between 10 - 12 days if they haven't attached to a muscle to grow, the ones that have attached to the deteriorated muscle continue to grow, but when I've returned home if a new muscle not previously affected by the MD starts to weaken there are no cells floating around to attach to it and stop the break down. Which in reality means that I need an injection each day as a preventative measure, but that's just not going to happen in Australia. So where does that leave me and future treatments.....ummm....I don't know yet, I haven't processed the reality of this I only have enough energy to focus on this treatment, on today, tomorrow hasn't begun yet.
Sabine has settled in really well. when I'm at physio she helps the other therapists with the children having treatment or the siblings who are here and bored! She throws them a ball to catch and is enjoying having this role as helper. In the afternoon she pops down to the nurses station for a little while, helping them and enjoying there company. They all love her and give her lots of hugs and pinch her cheeks. For those who know Sabine know shes a very independent child and knows her own mind...spirited! I love her determination and I know she will make an awesome adult with great life skills, but she is struggling a bit with other people helping me, shes very protective, so its great that the staff here have embraced her desire to help and given her a 'special' role. Don't children have a way of holding a mirror up and reflecting you. When I was a child, about 3 years old, we had no gate on the fence separating the front and back yards, so if I wanted to I could go out the back door through the gate and into the front yard, I never went through but I had the door to freedom if I wanted. Dad finally put a gate up and the next day mum watched me from the kitchen window drag a bin over to the fence, climb up and drop over the other side! When I was give the choice for freedom I didn't take it but as soon as a barrier was put in my way, pffft...theres no way I'd have that! Its that stubborn determination that has kept me going in life and I see it in Sabine, my poor parents ha ha ha!!!!
Back to physio today and this afternoon I had a ride in an ambulance to have tests done ECG and a scan just to make sure all was well with my heart and yes I have one and its healthy. Its always such a drama transferring me in and out of cars and on examination tables, but no body dropped me so that's a good thing :-)
Thanks to those who send me encouraging emails....your words help so much.
2 days down....26 to go (not that anyone is counting ;-)