tag:blogger.com,1999:blog-644167906926258532024-02-20T01:47:11.096+11:00Help SierraHelp Sierra go beyond her limits.How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.comBlogger116125tag:blogger.com,1999:blog-64416790692625853.post-1911278905834366842016-04-12T23:41:00.002+10:002016-04-12T23:43:31.027+10:00Fierce Grace Brixton My dear friend Nigel and I met almost immediately after I arrived in London in July 2000. As an ex-dancer trying to settle into London life I was looking for something to keep my body and mind in shape. I found Bikram and asked my new friend Nigel to try 'hot box yoga!'<br />
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Throughout the 7.5 years I taught for Michele Pernetta, teaching what has now become her brand: Fierce Grace yoga, Nigel and I have always remained close friends. I am delighted to return to London a few times each year to teach for him and his wife Katie's Brixton FG studio.<br />
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I believe it's remarkably easy to take mobility for granted when you are able bodied, especially when you are able to access an amazing yoga practice through Fierce Grace. <br />
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In 2007 my husband and I gave birth to a beautiful, intelligent and profoundly disabled little girl Sierra Rose. She is a bright, a wonderful spirit and has severe Cerebral Palsy. Moving back to Australia was a choice I made to take a job with a salary that would provide for my husband, Sierra and me while allowing for my husband to give primary care to our little girl.<br />
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The Australian Govt. pays for basic schooling and equipment but given the complexity of Sierra's needs the basics come no where near to what it costs.<br />
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In October 2015 we invested in Sierra attending physiotherapy in the UK focused on enabling her to use her hands to drive a motorised wheel chair. She was successful and for a child with severe disability this is a miracle.<br />
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Since October I have been raising funds to buy Sierra a motorised chair. The chair will mean an entirely new and exciting future of independence for Sierra both at school and at home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-jzZ9oolpzG_RH7hEBXYvkWeHKeBhV87qWU5qco3awOhom5fEtlIyDxI9QToMchTrnPXIzqXvarx4QntWD1FY5HkPlCM8-96dKe5uNYCCFJ0AyxQvLGyQXpIct7hpKZP5Lk5viJnPZrU/s1600/Nigel.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-jzZ9oolpzG_RH7hEBXYvkWeHKeBhV87qWU5qco3awOhom5fEtlIyDxI9QToMchTrnPXIzqXvarx4QntWD1FY5HkPlCM8-96dKe5uNYCCFJ0AyxQvLGyQXpIct7hpKZP5Lk5viJnPZrU/s640/Nigel.JPG" width="426" /></a></div>
Any donation makes a big difference. Thank you in advance for you generosity and kindness. Karen, Shane and Sierra xx<br />
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<br />How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-21331829158483996222016-02-03T23:10:00.002+11:002016-02-27T11:25:12.384+11:00Meet Sierra<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk-5Hlb92dCceA2Ovq9t70PxQx6lYXB-pNVHJXxkQno6KgLxpHVja0FO8xN9cdTLsV52e47bRXD9HaO9Nnukb_M2ZSnHtTzkwMmc5egP0De21j7TPAoI7AzQ4dFxpbNnigq81YohpSe0s/s1600/IMG_0441.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk-5Hlb92dCceA2Ovq9t70PxQx6lYXB-pNVHJXxkQno6KgLxpHVja0FO8xN9cdTLsV52e47bRXD9HaO9Nnukb_M2ZSnHtTzkwMmc5egP0De21j7TPAoI7AzQ4dFxpbNnigq81YohpSe0s/s320/IMG_0441.JPG" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIpKXHDA2WkEL6ENUpxe0sN0O7hLg8hjGwF7yid55o7d3c8jktx-IU-fjED-6H3peg-AYiz0BQOb7D-64hxN-90uPx17nf2GvWoqNY5n3zOSokIjE0nBSluOVEfR6FISIwfuB6FYvPitU/s1600/Sierra8.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIpKXHDA2WkEL6ENUpxe0sN0O7hLg8hjGwF7yid55o7d3c8jktx-IU-fjED-6H3peg-AYiz0BQOb7D-64hxN-90uPx17nf2GvWoqNY5n3zOSokIjE0nBSluOVEfR6FISIwfuB6FYvPitU/s200/Sierra8.jpg" width="150" /></a><br />
This little sweetie, Sierra Rose is 9 years old. She is bright, has an amazing spirit and has cerebral palsy.<br />
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In October 2015 Sierra attended physiotherapy in the UK focused on enabling her to use her hands to drive a motorised wheel chair. She was successful and for a child with severe disability this is a miracle.<br />
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This UK physiotherapy and many other OS trips accessing experts across the globe who can really make a difference in enabling Sierra to be go beyond her limits, have only been possible through the financial support of others.<br />
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Some of the highlights include: <i>(*this blog has posts throughout where you can read about individual trips and specific results)</i><br />
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1. Sierra learning to use the muscles in her eyes with specialised contact lenses provided by a Prague specialist eye doctor<br />
2. A massive improvement in Sierra's immune system after stem cell treatment (using her own cells) in a German stem cell clinic<br />
3. Talking to her parents and teachers through a communication computer that is controlled by her eyes<br />
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The aim is to have Sierra be as independent as possible!</div>
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<b>Sierra Today......</b>Since October we have been raising money to buy the motorised wheel chair which Sierra used while in the UK. The chair will mean an entirely new and exciting future of independence for Sierra both at school and at home.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6qFr6bQxgt8KxGjQyzdby1L1qB_F-j2YfyxS6aaoN1euMfbzzVp8qzKCyPq9dhDB44QCfvoSDnw9i61t9qHBNI-ILH6hc9O4v3WvCuX0jPX1GZgye1hSljO6W5OjjTgp6sUjRwid10Fw/s1600/Chair.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6qFr6bQxgt8KxGjQyzdby1L1qB_F-j2YfyxS6aaoN1euMfbzzVp8qzKCyPq9dhDB44QCfvoSDnw9i61t9qHBNI-ILH6hc9O4v3WvCuX0jPX1GZgye1hSljO6W5OjjTgp6sUjRwid10Fw/s1600/Chair.jpg" /></a></div>
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Chair cost $13,000 </h2>
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Funds raised $1,700</h2>
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We'd love you to contribute. Any $$$ amount will make a difference!</h2>
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Come and join in the fundraising fun!</h2>
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<br />How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-41484509635380152332016-01-27T06:35:00.001+11:002016-01-27T06:38:01.194+11:00My friend Ravi<div>Ravi is my taxi driver and friend from when we arrived back into Australia in 2008. </div><div>One day in the car he overheard my conversation about needing money for Sierra, it was our initial fundraiser in Australia. What he did next flawed me......He asked Shane, Sierra and me to come to his Sikh temple. I have never experienced being humbled in the way those two Sunday mornings impacted me. He asked that we wear traditional clothing, I covered my hair. He asked that we write Sierra's disability on a piece of A4 paper in bold black felt pen and he stuck it on the front of a cardboard box. He spoke to the temple president and arranged for us (with Sierra) to sit at the entrance of the temple as people arrived for worship. As people arrived family after family, person after person walked up and put cash donations in the box. Some put in a few dollars and some $20, $50, $100, $150. For at least two hours straight on both occasions we knelt and said thank you to every person who gave. We had hundreds of donations. NOT ONE person knew us or queried how we were chosen to be gifted. Many people touched Sierra's hands and gently stroked her head. Some women smiled and asked if they could hold her. So many families said they would pray for her. And all Shane and I could really do was say thank you to each person who approached. I have never gotten over that experience. The world is full of love, generosity and kindness. ❤️</div><div><br></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-38932486043283995862016-01-19T22:38:00.002+11:002016-01-19T22:39:28.346+11:00Sierra Today<h2 class="separator" style="clear: both; text-align: left;">
Have a read through the recent posts and be amazed....Sierra is driving a motorised chair</h2>
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You had something to do with this extremely high level disabled child being able to see, talk with a computer and now drive a motorised wheelchair. For a child like this any of these are a miracle.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2EzeFIroFWDG2klurkXBpRz-P-Lqk09cnnPYosIh6doURaNt8RhMl0yip6Gh_hAVT4dHh7OQDpiAsFXl-f9Zn5pTpJgQzHaJ4-DJuLCcaoPtbJP_bCIE-pcMB7B3UhWBdFSXsrhk2w3Q/s1600/Sierra%2527sAngels.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2EzeFIroFWDG2klurkXBpRz-P-Lqk09cnnPYosIh6doURaNt8RhMl0yip6Gh_hAVT4dHh7OQDpiAsFXl-f9Zn5pTpJgQzHaJ4-DJuLCcaoPtbJP_bCIE-pcMB7B3UhWBdFSXsrhk2w3Q/s320/Sierra%2527sAngels.jpg" width="252" /></a></div>
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These achievements happened through multiple trips overseas, engaging the best therapists, often from other countries and corners of the globe and a relentless commitment from us to have Sierra go beyond her limits.</div>
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Would you be willing to help again? The motorised chair we are buying costs </div>
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<span style="font-size: x-large;">£5850</span> </h2>
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We are asking everyone who has ever been involved in our journey to look and see if you could be involved again. You could hold a fundraiser at work, at yoga or make a donation. Any amount
will make a big difference.</div>
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You can donate using the account details on this helpsierra blog or contact me on <a href="mailto:sierrahelpfund@gmail.com">sierrahelpfund@gmail.com</a> for further details.</div>
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Love Karen, Shane and Sierra xx</div>
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How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-90239436959524038762015-10-07T22:36:00.000+11:002015-10-07T22:42:54.134+11:00Helping Hands trip...The two weeks was by far one of the most successful Sierra trips we've had. Using the two physiotherapists from Prague was excellent in both saving money from flights and in the quality of physiotherapy they provided. I was amazed how much further Sierra's stamina lasted and how supple we were able to get her limbs in leading up to the physiotherapy intensive, by using such incredible quality in care.<br>
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Sierra was successful in starting to use her hands and in driving a borrowed motorised wheelchair for the first time. By the third day she was lifting her hand off and on the driving stick to change directions and reposition her hand. Very exciting to see.<br>
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Now I have new problem.. how do I buy that chair?<br><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRz222pTEv1Yab3OTlix03Fxc7cB_fsUw7PTq-QF0DPhbbNGcRuj4jhTbd-X12lVMFQjKG31ji0zdgCzwf9dfFtFEbyJsRkKJRpit3rWgO_nnmf-gH2Nnt8lLtdAa0A-DYm12Q_xu2QPc/s640/blogger-image--1918276777.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiRz222pTEv1Yab3OTlix03Fxc7cB_fsUw7PTq-QF0DPhbbNGcRuj4jhTbd-X12lVMFQjKG31ji0zdgCzwf9dfFtFEbyJsRkKJRpit3rWgO_nnmf-gH2Nnt8lLtdAa0A-DYm12Q_xu2QPc/s640/blogger-image--1918276777.jpg"></a></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-26878715683823135942015-09-27T02:24:00.000+10:002015-10-02T07:51:03.419+10:00Helping Hands trip...Arrived in London on Friday. Wow! What an intense week Tuscany was...<br><br><div>
One of the many benefits of these OS trips is the many challenges one faces when they leave their house with a severely disabled child. There are so many more challenges than anyone could ever imagine before they left home.</div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The OS journey has me problem solve, find new ways to do things and build up resilience. It makes it far harder to argue for staying home from a visit to the Westfield on a regular Saturday afternoon (10 minutes drive) just because I am tired ... if we can make it all the way to Tuscany!! </span></div><div>
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I have planned this trip for months and yet on the third day of the physiotherapy with Tereza we had both a breakdown and a meltdown! I returned from an hour or so of the yoga training, just a few minutes walk from where we were staying. I found Tereza sheet white and angry. Not with me or with Sierra, but from what was a BIG day. Sierra had choked, had big seizures, spat out nearly all the food she had been fed and then angrily tried to eat the spoon out of Tereza's hand due to hunger and probably dehydration. <div><br></div><div>I took one look at Tereza and knew she needed a break but it also kicked off my own realisation (yet again) of ALL that Shane, Sierra as I deal with on a daily basis. It's always stressful, it's often life or death and Sierra's need for care and focussed attention is relentless. <div><br></div><div>I started crying, sobbing in fact. Thank goodness there is somewhere in the world that was safe enough to really 'go there'. I cried for about 24 hours. It just kept coming in waves. Seeing Tereza's face had been like looking in a mirror.</div><div><br></div><div>Then the crying came to an end...(for now)</div></div></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-26724199047815494432015-09-22T06:52:00.001+10:002015-10-01T21:47:32.062+10:00Helping Hands trip...<p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Both the therapists I have flown over from Prague last week and now this week have been working with children running Hippotherapy camps for many children and families.</span></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><strong style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">"Hippotherapy </strong><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">is a treatment method of physiotherapy (rehabilitation) which uses a specially prepared horse, specifically the movement of his back during a walk, to provide therapeutic effects. This movement is alternating and repeats rhythmically and cyclically. It offers stimulation for all senses and this directly influences motor behavior of the client through the activation of all levels of central nervous system. Our main aim is to improve neurological functions and sensory processing in children with various health disorders."</span></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">One of the ideas I am starting to consider is about collaborating the efforts between the UK and EU therapists even further next year....</span></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">The farm where we are accessing treatment with Anel this year is the home of a child with complex needs like Sierra's. They have built a property that has a hydrotherapy pool, therapy rooms and stables with horses, all of which the family intend to offer for other children with disability.</span></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><span style="-webkit-text-size-adjust: auto;">One of my commitments is to empower families like mine to access a global approach to treatment. While some of what each country offers is excellent, I have found that a combination of the various approaches, at different times of Sierra's journey, has been most impactful. </span></font></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0); font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">I see a possibility of supporting other families accessing treatment that is not available where they live. </span></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><span style="-webkit-text-size-adjust: auto;">If we were to have the Czech physiotherapists working from the same place as the UK therapists for a couple of weeks next year, and encouraged families to access the therapy all together it would be easier. </span></font></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><span style="-webkit-text-size-adjust: auto;">Something like: one week of Hippotherapy in the morning, physiotherapy in the afternoon and a couple of hydrotherapy sessions. I think it would be great for the parents as well!</span></font></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><font face="Helvetica Neue Light, HelveticaNeue-Light, helvetica, arial, sans-serif"><span style="-webkit-text-size-adjust: auto;">Food for thought!</span></font></p><p style="text-align: start; margin-top: 0px; margin-bottom: 15px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-55979443506557770132015-09-21T01:59:00.001+10:002015-09-21T01:59:36.905+10:00Helping Hands trip...We made it to Rome, and my shoulder is still intact. I was so concerned leading up to this trip about how I would manage two weeks of lifting Sierra and her equipment, several times a day, for two weeks. I've had an injured shoulder for weeks which hasn't been recovered due to lifting Sierra at home, so being away with her, full time for two weeks has been worrying. <div><br></div><div>I had to ask for the airline attendants to help with the lifts from her wheel chair, to the aisle chair that takes her through the plane, onto the plane seat, then back onto another aisle chair to exit the plane, then onto her wheel chair and so on.....plus bags! </div><div><br></div><div>Thankfully Tereza, Sierra's physio for this week has arrived now arrived from Prague. Yesterday we took what became an epic<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> journey from Rome to Tuscany via Pergia! Talk about annoying. There were no hire cars in Rome, NONE. We had to take a train to Perugia, then a taxi to Perugiua airport and then drive to Tuscany! </span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Luckily Tereza is comfortable driving on the right hand side, and was able to help with all the lifts and transfers from one vehicle to another, which included Sierra, her wheel chair, car seat and many bags.</span></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-358891812599612172015-09-18T14:44:00.001+10:002015-09-18T14:44:27.860+10:00Helping Hands trip...This time I'll tell you the truth. No embellishment for the sake of protecting people. <div>I have been really worried about this trip. I have a very sore shoulder. How on earth can I do two weeks with an 8 year old disabled child who I can't even lift!</div><div>Anyway, we're on our way. The most important first hurdle has been overcome. I was able to hold her long enough over the toilet such that she could do a number 2. My sore shoulder killing and my thighs screaming at me, but I was able to hold her upper body upright enough to allow her body to do it's function. </div><div>Most people wouldn't even want to know.. The medicine can only be given after a number 2. </div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-7698660067765026932015-09-12T14:21:00.001+10:002015-09-13T07:21:05.538+10:00A week to go 'Helping Hands'....<div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMfBYqB61GqrmMKCZj1Jf3BS6IrEJjkqW24VRYlZ2OtJsRNhT3UZrsTPhEtNASGBzxMMt39EFC3vZOErt02BWNEKny_LQdG-z5bL2HtMezZMc9qiCRRE271yFbolB5WfH0hgJfqINZGw/s640/blogger-image--1969109786.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitMfBYqB61GqrmMKCZj1Jf3BS6IrEJjkqW24VRYlZ2OtJsRNhT3UZrsTPhEtNASGBzxMMt39EFC3vZOErt02BWNEKny_LQdG-z5bL2HtMezZMc9qiCRRE271yFbolB5WfH0hgJfqINZGw/s640/blogger-image--1969109786.jpg"></a>It's less than a week until we leave and we are so far from having the finance we need.</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">What we're focussed on this time is getting Sierra's hands functional so she can drive a motorised wheel chair. I am taking Sierra over to the UK see Anel van dee Merwe www.childreninmotion.co.uk (see previous blog posts about the therapy itself)</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I've managed to negotiate a good price on everything so far: accommodation walking distance from both the venues where Sierra will be accessing physiotherapy, flights, the physiotherapy itself and venues to bring everyone together to celebrate Sierra's Angels, but the cost is still significant. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">I'm always so anxious at this point that it will be a waste of time, the money won't come or that I will forget to organise something important. It's a big trip with so many details to finalise. </div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Every time I have been O/S in this way it has proven to be far more impactful than I imagine BUT I still go through the same thought processes....</div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">Thanks all for your support! <span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">A quick reminder of the link </span><a href="https://humanityproject.com/projects/sierras-angels/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">https://humanityproject.com/projects/sierras-angels/</a><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"> </span><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">if you are willing to give a 'Helping Hand' at this time. </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Ps. Remember to post your 'angel wings' hands to BOTH your Facebook page and Sierra's Angels </span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Every $ amount makes a difference.</span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;"><br></span></div><div class="separator" style="clear: both;"><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Love Karen, Shane and Sierra x</span></div><br></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-11917466825369138062015-08-21T23:21:00.001+10:002015-08-21T23:21:27.815+10:00Anel van der Merwe<p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s3" style="font-weight: bold; text-decoration: underline; -webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Early Intervention in Cerebral Palsy from a Paediatric Physiotherapist’ perspective</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">Let me</span><span class="s4"> perhaps start by explaining what Cerebral Palsy and Early Intervention means.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s5">Cerebral Palsy is a very broad term given to disorders of movement and posture. The damage to the brain is in the </span><span class="s5">different </span><span class="s5">part</span><span class="s5">s</span><span class="s5"> of the brain </span><span class="s5">that are </span><span class="s5">responsible for controlling movement</span><span class="s5">. The damage</span><span class="s5"> is permanent but not progressive, but because we work with children who are growin</span><span class="s5">g, </span><span class="s5">we see symptoms which appear progressive i.e. children might get tightness in their muscles or develop deformities such as curvatures in their spines which may require surgery. Other parts of the brain responsible for functions such as communication, hearing, vision and the ability to learn may also be affected. The lesions in the brain could be sustained before, during or after birth before the second year of life.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">Early intervention is a term that is often used when it comes to treating children with Cerebral Palsy. </span><span class="s4">It is to be proactive with assessments and treatment for babies where there is an </span><span class="s4">indicat</span><span class="s4">ion that </span><span class="s4">they</span><span class="s4"> could </span><span class="s4">have </span><span class="s4">possibly sustained a brain lesion and would likely be diagnosed with Cerebral Palsy later on in life. A range of professionals are involved including a Paediatrician, Health Visitor and Physiotherapist to name but a few. The purpose of early intervention is to reduce the likelihood of poor long-term outcomes for children and their families. Early intervention does not mean preventing or curing. It is important that early intervention starts </span><span class="s4">at the earliest possible point when the baby is medically stable and preferably before </span><span class="s4">problems appear. My philosophy is that it is better</span><span class="s4"> for a baby to receive treatment and optimise their development, even if they are not diagnosed with Cerebral Palsy at a later stage than to </span><span class="s4">‘</span><span class="s4">wait</span><span class="s4"> and see’</span><span class="s4"> and waste valuable time and have their development compromised</span><span class="s4">.</span><span class="s4"></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">It is also important to understand how the brain develops early on in life in order to understand the theory behind early intervention.</span><span class="s4"> I’ll try to explain this in the simplest way possible. </span><span class="s4">A</span><span class="s4"> baby is born </span><span class="s4">at 40 weeks gestation </span><span class="s4">with roughly 100 billion n</span><span class="s4">eurones already developed in their</span><span class="s4">brain. </span><span class="s4"> The</span><span class="s4">re</span><span class="s4"> </span><span class="s4">are enough </span><span class="s4">neurones </span><span class="s4">to last a lifetime</span><span class="s4">. You can imagine these as a multitude of small trees with many branc</span><span class="s4">hes and leaves. Initially </span><span class="s4">the</span><span class="s4"> baby’s movement is made up by innate patterns/responses and</span><span class="s4"></span><span class="s4">movement </span><span class="s4">that is </span><span class="s4">already acquired in the womb</span><span class="s4">. With this very basic repertoire of movement </span><span class="s4">the</span><span class="s4"> baby will start experimenting, sometimes accidently, and as these new movements are repeated, the leaves of different ‘trees’ will start making connections and as these movements become more refined and skilled a process known as pruning will take place where some of the branches and trees will be reduced to make the brain environment less cluttered. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">The </span><span class="s4">more the </span><span class="s4">connections </span><span class="s4">are used the more they </span><span class="s4">becom</span><span class="s4">e</span><span class="s4">strong</span><span class="s4">er and</span><span class="s4"> </span><span class="s4">well organised </span><span class="s4">pathway</span><span class="s4">s and the movement </span><span class="s4">are</span><span class="s4"> no more experimental</span><span class="s4">. The messages that are sent across these pathways can therefore be sent quicker and more efficiently and </span><span class="s4">this </span><span class="s4">results in skilled movements becoming smoother and more automatic, i.e. it is not a carefully thought through process any longer but rather just </span><span class="s4">happens almost without thinking. Th</span><span class="s4">is</span><span class="s4"> process counts for the repetition of normal and poor/abnormal movement </span><span class="s4">that</span><span class="s4"> could therefore also lead to poor habitual</span><span class="s4"></span><span class="s4">movement patterns which could lead to further difficulties.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">If movement is not repeated the brain interprets it as irrelevant and discards the connections, this is better known as the ‘use it or lose it’ phenomenon. You could say the brain is building up a memory bank with lots of strong connections </span><span class="s4">that it can use subconsciously. </span><span class="s4">In time with a bigger repertoire of movement connections, the brain can assess a situation and select in an </span><span class="s4">instant which</span><span class="s4"> movement patterns will be most appropriate </span><span class="s4">and this </span><span class="s4">forms part of an individual’s problem solving abilities. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">The process </span><span class="s4">where connections are made </span><span class="s4">is known as myelination and is </span><span class="s4">optimised</span><span class="s4"> in the first year of life</span><span class="s4">. After infancy</span><span class="s4">,</span><span class="s4"> myelinisation continues until the age of about 40</span><span class="s4"> and, a</span><span class="s4">lthough it is never too late to make changes, it is easiest to make changes in the first year of life </span><span class="s4">particularly if there are </span><span class="s4">difficulties with a baby’s development. </span><span class="s4">If you’d like a very good more </span><span class="s4">in </span><span class="s4">depth explanation of the neurophysiology of the </span><span class="s4">developing </span><span class="s4">brain and you are up for a heavy but </span><span class="s4">interesting</span><span class="s4"> read then I can highly recommend the following article: </span><span class="s4">Early Diagnosis and Early Intervention in Cerebral Palsy, 2014 by </span><span class="s4">Mijna</span><span class="s4"> </span><span class="s4">Hadders-Algra</span><span class="s4">(</span><a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173665/"><span class="s6">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4173665/#B1330</span></a><span class="s4">). This article does however conclude that there is very little research evidence </span><span class="s4">into whether </span><span class="s4">early intervention is effective and that more research is desperately needed to guide best therapy practice.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">Having worked with children with Cerebral Palsy for more than </span><span class="s4">16 years</span><span class="s4"> it is my experience that the majority of children with Cerebral Palsy are not referred for therapy soon enough and that there is often an attitude of ‘your baby is only delayed and they will be ok by the time they are 2 years old’</span><span class="s4">. </span><span class="s4">This is despite parents </span><span class="s4">continuously </span><span class="s4">raising </span><span class="s4">concerns.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">In my opinion if there are any high risk indicators</span><span class="s4">,</span><span class="s4"> such as a baby being born early (32 weeks gestation and earlier), poor Apgar scores at birth following a traumatic birth, scans indicating any bleeding or cysts, a baby should be regularly </span><span class="s4">assessed </span><span class="s4">and treated proactively.</span><span class="s4"> T</span><span class="s4">here are </span><span class="s4">neuroimaging assessments (e.g. MRI and CT scans)</span><span class="s4">, </span><span class="s4">neurophysiological assessments</span><span class="s4"> and</span><span class="s4"> several </span><span class="s4">neuromotor</span><span class="s4"> examinations that have diagnostic properties that could be used alongside clinical observation by an experienced clinician. One </span><span class="s4">diagnostic </span><span class="s4">neuromotor</span><span class="s4">examination is the </span><span class="s4">Prechtl’s</span><span class="s4"> method on the qualitative assessment of general movements. This assessment method is used for the prenatal and postnatal evaluation of the integrity of the nervous system and is now proved to be the best predictor for cerebral palsy at a very early age i.e. before or the first few weeks post birth.</span><span class="s4"> Hand in hand with this assessment, </span><span class="s4">Bobath</span><span class="s4"> trained therapists are equipped with excellent observational skills </span><span class="s4">and </span><span class="s4">detailed knowledge of typical child developmental movement patterns. A therapist with this experience is therefore able to observe </span><span class="s4">subtle </span><span class="s4">abnormal movement patterns and muscle tone. </span><span class="s4">A </span><span class="s4">diagnosis of cerebral palsy is not necessary for a Physiotherapist to start treating a baby/child</span><span class="s4"> especially as this may not happen until the child 18 months old</span><span class="s4">, it is however important that if a child has Cerebral Palsy </span><span class="s4">the diagnosis </span><span class="s4">is </span><span class="s4">made </span><span class="s4">as soon as possible to ensure a baby/child is supported holistically. Traditionally a child is formally diagnosed at 18 months </span><span class="s4">because</span><span class="s4"> this is the time when </span><span class="s4">developmentally a typically developing child has reached the majority of their gross motor development and a concrete comparison can be drawn. With all the modern diagnostic tools and clinical expertise combined this can be </span><span class="s4">significantly </span><span class="s4">brought forward.</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">So if there </span><span class="s4">is</span><span class="s4"> not concrete evidence whether treating a baby early has a positive </span><span class="s4">long-term</span><span class="s4"> outcome then why a</span><span class="s4">m I advocating this approach? During my Physiotherapy training in South Africa we had a fourth year project in a very rural part of South Africa. It is culturally the belief of the residents that if a child is disabled forefather spirits possesses them and they are therefore ‘locked’ away in dark rooms. With the help of a local Physiotherapist, a local school and a few mothers that volunteered we managed to persuade several families to entrust us with their children and care for them during the day at the local school. We trained up the mothers in handling and communication skills and how to feed the children in a safer way. Why I’m sharing this story is that most of these children, who never received any therapeutic intervention, suffered with severe contractures and deformities and were significantly delayed in several areas but particularly in communication. Some of these children could not be placed in a seated position due to the contractures and </span><span class="s4">had to be positioned</span><span class="s4"> in a comfortable lying position</span><span class="s4">. </span><span class="s4">This experience is etched in my memory and as I’m now working in a first world country</span><span class="s4">,</span><span class="s4"> </span><span class="s4">we</span><span class="s4"> don’t see the effect of no therapeutic intervention</span><span class="s4">.</span><span class="s4"> I get passionately upset when there </span><span class="s4">is</span><span class="s4"> suggestions that therapy is not effective based on </span><span class="s4">the fact there is poor o</span><span class="s4">r</span><span class="s4"> </span><span class="s4">no research evidence. </span><span class="s4">Later </span><span class="s4">in </span><span class="s4">my career as I’ve gained more experience I’ve learned that due to abnormal muscle tone, children learn compensatory strategies </span><span class="s4">in order to move up against gravity when they have </span><span class="s4">abnormally high or low (or combination of the two) muscle tone</span><span class="s4">. </span><span class="s4">In the select few children whom I </span><span class="s4">have been</span><span class="s4"> privileged to have treated </span><span class="s4">from an </span><span class="s4">early </span><span class="s4">age</span><span class="s4">, i.e. before the age of one, I have learned that by influencing the muscle tone through handling techniques you are actually able not only to change movement patterns but to reduce/minimise </span><span class="s4">the use of learnt compensatory strategies. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">I’ve </span><span class="s4">also experienced that </span><span class="s4">when you start treating children </span><span class="s4">later</span><span class="s4">,</span><span class="s4"> </span><span class="s4">you spend a lot of time helping the child to ‘unlearn’ habitual compensatory strategies</span><span class="s4"> or bad habits. </span><span class="s4">So apart from the actual potential changes we suggest happen in the brain </span><span class="s4">and that we can influence with</span><span class="s4"> early intervention, there is </span><span class="s4">also a </span><span class="s4">large element of not allowing </span><span class="s4">poor strategies to develop in the first place.</span><span class="s4"> I have to state that this does however require frequent hands-on Physiotherapy input by an experience</span><span class="s4">d</span><span class="s4"> Paediatric Physiotherapist in partnership with the child’s parents following through with handling techniques throughout the course of everyday. </span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">I recall the countless times I have hear parents say, ‘we were told that our child will never walk, talk or understand anything and now look at him/her …’. I encourage every parent who has a baby and have ANY concern in there development to seek therapeutic intervention even if you are told countless times that everything will sort itself out. Always trust your parental gut instinct. And for all the parents who</span><span class="s4"> have older</span><span class="s4"> children </span><a name="_GoBack"></a><span class="s4">that have </span><span class="s4">been diagnosed with cerebral palsy </span><span class="s4">and have not had the chance at early intervention </span><span class="s4">don’t be discouraged</span><span class="s4">,</span><span class="s4"> it is NEVER too late to start making a difference!</span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4"><br></span></span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s4" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Anel van der Merwe</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s4" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Member of the Chartered Society of Physiotherapy</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span class="s4" style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Clinical Specialist Paediatric Physiotherapist</span></p><p class="s2" style="margin-top: 0px; margin-bottom: 0px;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span class="s4">Please visit my website </span><a href="http://www.childreninmotion.co.uk/"><span class="s7">www.childreninmotion.co.uk</span></a><span class="s4"> if you wish to </span><span class="s4">learn</span><span class="s4"> more about what we do and/or if you’d like to make contact.</span></span></p>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-60194706875860981002015-08-15T15:00:00.003+10:002015-08-15T15:10:20.757+10:00Helping Hands!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieEIhuo9hTj0c3gEIWoYsI8uv9QopNo1yhlm78nPLQ066sIBle_-Z3pzDmvy_Iy_O7r7WQ4bv_MjChWXKbKdOHGvnQf6IVLW8BwAozyA8EieEmkuG-9qNC1pah0BDaPyLCwS7fTX4moxY/s1600/Sierra%2527sAngels.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieEIhuo9hTj0c3gEIWoYsI8uv9QopNo1yhlm78nPLQ066sIBle_-Z3pzDmvy_Iy_O7r7WQ4bv_MjChWXKbKdOHGvnQf6IVLW8BwAozyA8EieEmkuG-9qNC1pah0BDaPyLCwS7fTX4moxY/s320/Sierra%2527sAngels.jpg" width="252" /></a></div>
<span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">Sierra and I have been getting our hands dirty this weekend in an attempt to make hand printed t-shirts that we can give out as gifts for Sierra's Angels giving us a 'helping hand' towards the next focus... getting Sierra's hands functional to enable her to drive a motorised wheelchair.</span><br />
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We have a physiotherapy intensive booked for the last two weeks of September. We will be working with Anel van der Merwe <a href="http://www.childreninmotion.co.uk/">www.childreninmotion.co.uk</a> who has worked with Sierra since she was 5-6 months of age and is by far the best physiotherapist we've found for Sierra's complex needs. In addition I have now confirmed Tereza Honcu to work with Sierra in advance of, and Anna Dobisova to work side by side with Anel during the week of September 28th - Oct 2nd to loosen her upper body up and provide additional support. Sierra is now at an age and body weight that I cannot do an OS trip alone. Previously I have flown a carer from Australia to help. Tereza <a href="http://www.caballinus.cz/fotogalerie-akce">http://www.caballinus.cz/fotogalerie-akce</a> is an excellent physiotherapist from Prague who has also supported Sierra from the first few months of her life and Anna is one of Tereza's peers. This time I am flying the two girls for one week each to support us. The care, physiotherapy and return flights are less than it costs to fly someone from here! I am so happy with the way all the pieces of the jigsaw are coming together, mostly because I know these therapists really connect with Sierra, and I feel confident it will make a significant impact to her function.<br />
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The next thing to secure is accommodation...<br />
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Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra xHow to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-36198104196846120712015-08-08T21:23:00.003+10:002015-08-08T21:23:55.171+10:00Helping Hands!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1x_110OTWaf7JNlBVTLB1frpyUwTiiQmFYYm3uz_RKTYrTuHW7ag2B-z0DlaEFJaSalOYNpZ0UGrCGeqR-11cH4J79_058nDqKHb48ezKJW4_3HnYnfoG1GZD0Gw9jRDRAppxvY_25A/s1600/Sierra%2527sAngels.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm1x_110OTWaf7JNlBVTLB1frpyUwTiiQmFYYm3uz_RKTYrTuHW7ag2B-z0DlaEFJaSalOYNpZ0UGrCGeqR-11cH4J79_058nDqKHb48ezKJW4_3HnYnfoG1GZD0Gw9jRDRAppxvY_25A/s320/Sierra%2527sAngels.jpg" width="252" /></a></div>
It's been a week since I announced we are kicking off a new fundraiser with a focus on having Sierra's hands become functional. If you spend just 10 seconds and imagine what difference using one's hands provides for any of us. For Sierra it could mean being able to direct a motorised wheel chair around her home.<br />
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We were able to get Sierra's hands to open from tight fists when we did Stem Cell therapy in her early years. We have enabled her hands to stay open (against the pull of the spasticity to revert back to fists) with Botox, hand splints and physiotherapy. It's now time to put those cute little hands to work!<br />
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The first challenge will be to loosen Sierra's upper body such that she can get the most from another physiotherapy intensive focussed on enabling her hands. The intensive will then need to be followed up by Shane and my efforts by applying a 6-12 month home program. <br />
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We have booked in with Anel van der Merwe <a href="http://www.childreninmotion.co.uk/">www.childreninmotion.co.uk</a> for the week of September 28th - Oct 2nd for this physiotherapy intensive. The<span style="font-family: Times, "Times New Roman", serif;"> price will be
£800</span>
for 2 x sessions each day and the home program to be written up. Anel has been Sierra's physio since she was 5 months old and is by far the best Bobath therapist we have ever worked with. In addition she has partnered with Shane and me year on year in advising us how to take Sierra far beyond where others thought she could achieve.<br />
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I have also found the right person to work with Sierra ahead of the physio intensive to loosen up her upper body in preparation.... more to come!<br />
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Any 'helping hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra xHow to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-62327738469373743582015-08-01T15:08:00.002+10:002015-08-01T15:36:27.697+10:00Helping Hands!!<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: large;">It's time to start again......</span>We left off in December 2014 with a bright future ahead. Unexpectedly we've had a tumultuous time integrating Sierra into school this year. Now with her participation in school finally settled we have had the space to consider what's next in supporting this little poppet in going beyond her limits..... After reflection on where Sierra's needs currently are and what would be the best thing to enable Sierra to be the most functional she can be (with a view to her living independently in the future), we have chosen her hands as the next focus. Hence my title "Helping Hands". <br />
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This September we have booked Sierra in with Anel van der Merwe <a href="http://www.childreninmotion.co.uk/">www.childreninmotion.co.uk</a> (the most competent therapist we have found, and Sierra's physio of 8 years) to work specifically on obtaining more functionality with her hands. <br />
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Any 'Helping Hand' that you can offer will be appreciated, any amount makes a big difference. Karen, Shane and Sierra xHow to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-51316106234682304272014-12-31T12:09:00.001+11:002014-12-31T14:24:17.356+11:00Goodbye 2014<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl5VfaaK158TJ01cNGmcYqR6k1Gs2kuHxJl9K_c9pJWpaXNAImFl6G9u5B77B7IfRJRMDYqfHc-QZYY66SdRlo37fkHUO20DHQ78aetQvTkO_9s1Cz_HnbQ-X0hsVFLovbe4CWceSUuXc/s640/blogger-image--613434083.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl5VfaaK158TJ01cNGmcYqR6k1Gs2kuHxJl9K_c9pJWpaXNAImFl6G9u5B77B7IfRJRMDYqfHc-QZYY66SdRlo37fkHUO20DHQ78aetQvTkO_9s1Cz_HnbQ-X0hsVFLovbe4CWceSUuXc/s640/blogger-image--613434083.jpg"></a></div>The year is coming to a close and I couldn't be happier with how things are. 1. We pushed through and Sierra is now welcome at Doncaster Primary school to attend year 1 with same two aides she had last year 2. I demonstrated success at work and am now being related to as a reliable senior member of our team 3. Shane and I are in love and a solid team facing into our future together 4. I see the possibility of expanding my impact as a yoga teacher in Australia and the UK 5. I have a community of incredible friends across the globe to put wind under my/ our wings...<div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUaKZb_kcy0TBru11OhcL8tOSh5LbQstwfXFsm3RMsyTpiwyQm7jMawCSzJux886zEbultbRlsdSJjeE5aG87U7sUnlyNQSBJQ58jdm4YhpGzv8REG2Q0sFtyQAQcU-_Exjq_OvehLcp8/s640/blogger-image-1054469776.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUaKZb_kcy0TBru11OhcL8tOSh5LbQstwfXFsm3RMsyTpiwyQm7jMawCSzJux886zEbultbRlsdSJjeE5aG87U7sUnlyNQSBJQ58jdm4YhpGzv8REG2Q0sFtyQAQcU-_Exjq_OvehLcp8/s640/blogger-image-1054469776.jpg"></a></div><div class="separator" style="clear: both;">In 2015 we can build from this platform in all areas and also reach 200 Sierra's Amazing Angels contributing at least £10 a month such that we have sustainability in 2015 and moving forwards</div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-84480269131494148422014-06-29T21:35:00.001+10:002014-06-29T21:35:00.071+10:00200 Amazing Angels AppealSierra's 200 AMAZING ANGELS Appeal has begun!<div><br></div><div>We now have 40 people contributing £10 per month.<div><br></div><div>I had thought that I wouldn't have to come back and do another fundraiser after we went through official channels last year (Govt. And Dept. of Education).</div><div><br></div><div>Truth is, there's just insufficient funding for people like us. Simple as that. And Sierra's needs are very high. She's an extreme case.</div><div><br></div><div>It is disheartening to be reaching out to people again and at the same time it's wonderful to be surprised by so many warm hearts and generous spirits. </div><div><br></div><div>Love </div></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-82549265071179694432014-06-08T16:42:00.001+10:002014-06-08T16:42:21.065+10:00Reality Cheque<p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Yesterday, time stood still while I watched the Doncaster Primary School Principal, Sierra's teacher and another staff member read through 7-8 different wads of paperwork, all with several highlighted sections outlining how the school are not able to meet Sierra's needs. Their answer is to send her to a "special school"; everything Shane and I have stood for slipping through my fingers and all I could do was listen and hear them fully. The bottom line is that we have not had the money to pay $300 per week, for bi-weekly $150 appointments for Speech and Language, Physiotherapy and Occupational Therapists to go into the school and train the school aides. The CPEC (Cerebral Palsy Education Centre) advocate that came with us to the appointment has worked for years in special schools. For several years she has helped integrate children, like Sierra, into mainstream schools and firmly believes Sierra is intelligent and perfectly capable of being in mainstream school. But without funding, she cannot remain there. A line in the sand has been drawn. Shane and I have <a href="x-apple-data-detectors://2" x-apple-data-detectors="true" x-apple-data-detectors-type="calendar-event" x-apple-data-detectors-result="2">until Tuesday</a> to work out an acceptable solution.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I have called a meeting with some of Sierra's Angels tomorrow to discuss a possible fundraising campaign to raise £25K annually by having people contribute a monthly donation.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Last year I pulled out all the stops and went for all the public funding I could find. Shane was fatigued and after years of people suggesting, "There must be something that the government can give you?!" and asking, "Well isn't that funded by the government or something?" I went for it and I exhausted every funding body I could find in Australia and filled in every funding application I could find in Victoria to give Shane, Sierra and I a better quality of life. It helped with the funding of some respite and a couple of pieces of equipment.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">We were also allocated the level 6 (maximum) funding for school, and were accepted on the disability support register with the government (money we won't see for years because we have to wait for someone to pass away to get allocated their amount and at the high rate that Sierra needs only 3% of people ever get allocated at all.....straight from the mouth of the DHS government representative himself).<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It had to be done and if I hadn't gone full out in this direction, we wouldn't have found our incredible carer Melissa. And Sierra would not be in mainstream school.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">On the other hand, it had a significant impact on my health and nearly cost me my job with the hours I dedicated to making it all happen.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Shane and I are exhausted and with a huge appreciation for the incredible generosity of everyone who has contributed to Sierra's quality of life!<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Currently we have no further physiotherapy, speech and language, occupational therapy appointments booked to help the aides in school with how to help Sierra learn, sit safely, avoid contractures and sores from sitting all day, changing her and supporting her using her communication book and computer due to no further funding availability. Unbelievably there is virtually NO funding available for kids between 7-13 years old. In addition, there are the O/S trips to train our carers and work with the UK physiotherapist who creates a home physiotherapy program and to visit the European doctors (all who provide additional input or therapy that we have not found here).<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I had believed that if I actually did the work and approached all those funding bodies that people said "must be out there" and went to the government and actually lodged the DSR, I would not have to come back to my friends and family again.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">It breaks my heart that with everything that people have given us over and over again that we don't have what we need.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">One of the initiatives that a Sierra Angel came up with once was a £10 a month scheme. On reflection it is by far the best idea overall. I have approximately 15 people who contribute in this way. This has benefitted us is that when Sierra and I do the O/S trips there has been money in the UK account to pay for the physiotherapist and other appointments. I am now proposing we extend this initiative to cover all of Sierra's therapy.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Why I like this initiative the most is because it's sustainable and if someone asked me to participate in this way I know I would if I believed in the cause. <o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">If you are willing to help or ask others to do this you will see at the bottom of this blog my account details for both Australia and the UK. Any annual, monthly or weekly amounts will be greatly appreciated.<o:p></o:p></span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">My target is £25K annually because it really does take that and more.</span></p><p style="margin-right: 0cm; margin-left: 0cm;"><span style="-webkit-text-size-adjust: auto;">That's just over 200 people at £10 per month.</span></p>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-79663044201598373542013-12-27T14:21:00.001+11:002013-12-27T14:21:52.180+11:00Closer and closerThere are a few days left until Sierra starts school and still so much to get across the line. <div><br></div><div>The beautiful Maggie Carr raised money on Christmas Day to help fund the training of school aides in the first two weeks of school, Sierra's new chair was delivered, her standing frame money and full funding for school (to pay the school aides) came through BUT there is so much more to manage yet.</div><div><br></div><div>I can not have another year like this. It has taken everything and other important areas of my life have taken a hit. However, this year was necessary and we are on track, we just can't stop that's all and I could really use a break!!</div><div><br></div><div><br></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-13141228342330695542013-11-28T20:07:00.001+11:002013-11-28T20:08:33.223+11:00Last leg - Come forward if you can!Here I am with just a month to go.....People (you) have been amazing to me this year. People (you) have gone beyond, come out of the woodwork and we have raised more money than ever before on equipment, therapy, O/S trips and for the first time respite as well. We now have the beautiful Melissa working for us and I trained Shane's sister Tania (our first family member to be able to fully care for Sierra) earlier this year while in Umbria.<div>We have also had more hospital stays this year and more set backs than ever before. In February we hit rock bottom when Sierra's hip operation did not go well and they had to re-do the op and she came out of hospital in a constant state of seizure activity, just after being hospitalised in January in status and then in September completely out of the blue Sierra got a flu right on the back of recovering from a chest infection and went straight into ICU. Life stood on a knife edge that night and thankfully she pulled through.</div><div>All the while we have remained committed that Sierra would get into mainstream school next year and be able to use her computer. Miraculously and through all our efforts she has been accepted at Doncaster Primary; we will hear any day now the confirmation of full funding, she has three aides and she is using her computer.</div><div><br></div><div>There is still another month and one last piece of money to be raised to train the school aides in how to use the computer to give Sierra a voice in the classroom.</div><div><br></div><div>Thank you all, and come forward if you can help! </div><div><br></div><div>Love</div><div><br></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-31834057242749688802013-10-12T20:32:00.001+11:002013-10-12T20:32:21.275+11:00In the 'BurbsSaturday in the suburbs and it's ground hog day. Sierra has recently come out of ICU and is back at home with little ability to use her mouth to eat and drink effectively. This is the third time this year I have taught her to drink and eat from scratch. Of course the muscle memory kicks back in at some stage but at the moment I can't get through even one meal without several stops and starts and all the rest of the palava!<div><br></div><div>This has not been the situation in previous years, 2013 just happens to have been the year of re-starting with eating and drinking and I am now close to insane with it all!!!!</div><div><br></div><div>On a better note...we went back to Cerebral Palsy school on Friday - first day back of term and first day Sierra was well enough after ICU. She perked up as soon as we arrived! Big time smiles, full-out participation and showing off was at play. </div><div><br></div><div>And on an even better note ... Sierra had her first day of "transition to primary school" on Friday. All the children attending next year at Doncaster Primary will attend every Friday morning for two hours for the rest of the year. The intent is that when they start next year they are at home with the school environment and each other.</div><div><br></div><div>In addition, I now have a fantastic girl who will go into the school along with Shane for the first two weeks of next year and train Sierra's 3 aides. Yes, you did read that correctly ... Sierra will have 3 aides working with her next year!!</div><div><br></div><div>Progress is slow but we have progress.....Now come on kid and eat!</div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-7559230170900230012013-10-01T19:15:00.001+10:002013-10-01T19:15:53.942+10:00Getting back up to fight!Sierra is recovering slowly from the ICU experience. She's been set back a fair way again..... But we are <b>BACK!</b> <div><br></div><div>Sierra <b>will be </b>school ready by January. Not sure how we'll get there from here but it shall be.</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8yZ_zcGECXsGF9OQ4ixchhsEmAOQdySpTpjr35FVQIO4J9px5RUtHAwTawQPRQMZZI4iyIJVfzvtGlt1cYwdCBX468pZFIYFCKpHGk6nSGrbv69TZtBhCQZSrJKhx8sknrjfZF9CAlmk/s640/blogger-image--106608330.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8yZ_zcGECXsGF9OQ4ixchhsEmAOQdySpTpjr35FVQIO4J9px5RUtHAwTawQPRQMZZI4iyIJVfzvtGlt1cYwdCBX468pZFIYFCKpHGk6nSGrbv69TZtBhCQZSrJKhx8sknrjfZF9CAlmk/s640/blogger-image--106608330.jpg"></a></div></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-40872820997304514972013-09-27T21:37:00.001+10:002013-09-27T21:37:14.489+10:00Home again JaneSierra came home from the ward today. Shane and I collaborated well, being the directors of what was happening in the hospital system and pushing to get her home. It's a testament to us both that we can get on the same page at these times. How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-41167804537654265652013-09-23T21:32:00.001+10:002013-09-23T21:32:10.901+10:00Word from the WardHere we are almost 10 days later.... If I told you honestly what it was like here you would say what everyone says, "I don't know how you do it?" I know how.... You just do. <div><br></div><div>Shane has a sign on the fridge and it says, "You do it when you feel like it and when you don't." I read that everyday when I'm home and it reminds me to take the action!<div><div><br></div><div>Being in hospital tonight is like that. I have been away for four days, we have been transferred to the ward from ICU and if we want "good service" we have to build the relationships with this set of doctors and nurses from scratch. </div><div><br></div><div>All I want is to go home, watch DVD's, and relax. However, I know Sierra needs me here. To reassure her. For her to know Mummy is here as well as Daddy (and Nanny) and for me to fight for her and alongside her to get the best possible "service", get well and get out of here.</div></div></div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-59595031395287767362013-09-19T19:54:00.001+10:002013-09-19T19:54:16.651+10:00ReflectionSierra is still in ICU and I am in Auckland beginning the next piece of work and next engagement. <div><br></div><div>How do you reconcile life when both parts are equally important? <div><br></div><div>The doctors tell me there is still, "room to move" with her treatment of the chest infection she struggles with and I feel torn apart at leaving her in the hands of doctors and anyone other than her mother (and father).</div></div><div><br></div><div>These are the moments I reflect on.</div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0tag:blogger.com,1999:blog-64416790692625853.post-14627974196096888252013-09-14T16:50:00.001+10:002013-09-14T17:09:34.137+10:00Loving a life with disabilityI sometimes confide in people that I have made Sierra's disability a life-style choice. What I mean by this is I can view this situation as restrictive and bad OR find the things Sierra gives me access to as exciting, and look for the upside. <div><br></div><div>It's easier to see travelling O/S for therapy, fundraising and respite as more exciting than sitting in the Royal Children's Hospital on the weekend. However, I can see the opportunity here as well, when I look!</div><div><br></div><div>This weekend I have come down with Sierra's flu so I was able to access antibiotics quickly, and panadeine. Shane and I have a room on Floor 2 and Sierra has one-on-one nurse care so I've really had the opportunity to rest and read. Through Dropbox my sister has also given me access to DVD box sets, my favourite way to get better from illness! Friends, colleagues and family are in touch and we are able to laugh and talk. I was able to reconnect with the lovely Mills family who have been there for us so many times!</div><div><br></div><div>Sierra's carer will come here with her homework tomorrow and therefore stay longer and allow me not just to teach but also practice yoga. </div><div><br></div><div>These are small things, but they are the good, wholesome things that have one feel nurtured.</div><div><br></div><div>In addition I have been able to prepare for the week ahead. There are important opportunities in my life right now and being here has been helpful for catching up on administration and doing the preparation I need to win!</div>How to donate for Sierrahttp://www.blogger.com/profile/13345756728267925694noreply@blogger.com0