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<title>Isobel's blog</title>
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<dc:date>2012-3-27T00:00:00Z</dc:date>
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<title></title>
<link>http://www.friendsofisobel.com/page11.htm#115366</link>
<description>Our government seriously need to open their eyes. Fund the equipment to keep them alive Fund the gear to help them survive.Qld Health Rules and Regulations. I find it hard to understand that a regular child can use the toilet at the age of 2 and a disadvantaged child must be 5 years old before MASS will provide funding. Isobel requires a Commode Potty which would allow Isobel independence getting on and off as she wants. We have been quoted 1270 for this piece of equipment.The government will not help because a child her age can be lifted on and off the toilet. Forget the fact she demands her independence and secondly doesnt want to wear a nappy.It is beyond me why this necessary equipment is priced so exorbitantly then to realise we are on our own when to comes to funding it. We are desperate to buy a wheel chair accessible vehicle this year with all these other 1000 products in between we have not luck. I am passionately angry. Give us a break</description>
<dc:date>2012-3-27 06:11:54</dc:date>
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<title>Eye Surgery</title>
<link>http://www.friendsofisobel.com/page11.htm#114242</link>
<description>Eye Surgery It is easy to forget how emotionally challenging a day at the hospital is. I was persistent with every nurse Doctor anaesthesiologist when insisting I be there when Isobel woke up.  Every other child there was of a reasonable understanding of what was going on.Having to starve from 7am Isobel was last on the schedule going down to surgery at 220pm. She was remarkable to maintain a cool being so hungry.By 4pm after people in the ward asking after her I began to grow anxious and by 445pm I was asked to go to recovery. As Isobel doesnt talk like other children her age I was asked to gage her pain for them. The nurses were exceptionally accommodating even removing her IV due to her stressing over it.Whilst sitting with Isobel cradled in my arms it was truly a compromising time    I doubted I had done the right thing if she would resent me for her pain. The questions were endless. I was promising her all day Daddy would be here when she woke up and to my relief he was waiting in...</description>
<dc:date>2012-3-8 02:05:15</dc:date>
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<title>Isobels Progress 2012</title>
<link>http://www.friendsofisobel.com/page11.htm#111037</link>
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<dc:date>2012-1-24 04:26:38</dc:date>
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<title>What a week</title>
<link>http://www.friendsofisobel.com/page11.htm#102056</link>
<description>Friday I received a call from the Lions Club to adviseIsobel has been nominated for the  Lions Children of  Courage Awards  presented October 2011. She will be invited up on stage to receive a medallion and a club member will speak about Isobel and her journey. A moving invitation.  Significant day and the invitation is extended to all those involved in her life.Monday Isobel meet with the eye surgeon for her regular checkup where we were prepped for her next surgery. Initially Isobels eye rolled in causing her first surgery at just 8 months old Monday I learnt her left eye is now rolling out. As it was not something I had brought attention to the whole appointment was a warning and preparation of what is to come. I was not prepared to hear the word surgery today as Wednesdays appointment with the hip surgeon was the one I was building my anxiety for. Wednesday the day I have reserved my energy for. We meet with an exciting new Speech therapist who provides a wealth of information and ...</description>
<dc:date>2011-9-7 14:16:08</dc:date>
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<title>Change</title>
<link>http://www.friendsofisobel.com/page11.htm#101573</link>
<description>Its amazing how fast the year has moved. The goals we set have yet to be reached although you suddenly realise how quickly she has grown. My little Isobel is not so little anymore.Izzy has made some extraordinary improvements this year however the year has been so eventful with surrounding circumstances you forget how far we have come.Our goal this year for Isobel was improvement in her speech  as I was confident with the physiotherapy side of things. Unfortunately the government provide a limited service here so to date Isobel has only received two hands on physio sessions through our government provider and maybe 3 speech pathologist sessions.Although Isobel started the year with only 15 words thanks to Deb our respite provider and  Meleetia  her afternoon student teacher Izzy has reached a massive 50  70 words. Unfortunately Isobel is about to lose her afternoon guidance which has really helped her and me Mum. Meleetia will be sorely missed. We are also losing our main support netwo...</description>
<dc:date>2011-9-1 12:44:05</dc:date>
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<title>Isobel in her walker</title>
<link>http://www.friendsofisobel.com/page11.htm#93838</link>
<description>My daughter did some amazing walking in her walker today for around an hour and a half helped me hang out washing walked down to collect the mail from the mail box walked up the drive way to wave goodbye to Daddy then back down and around again. As awkard as it seems she is happy and proud of herself wearing a smile not to be judged.Out of nowhere it hit me Isobel is almost 4yrs old and this is her life. I love you Isobel.</description>
<dc:date>2011-5-13 12:44:40</dc:date>
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<title>Therapy 4 Kids disappointment</title>
<link>http://www.friendsofisobel.com/page11.htm#93679</link>
<description>Due to the persisting difficulties we experienced with the clinic in Germany confirming Isobels stem cell appointment  we took what we could get in the meantime resulting in unfortunately having to forgo Isobel intense therapy in Florida with Therapy 4 Kids. This resulted in informing Therapy 4 Kids we were disappointed however had to follow Germanys lead and cancel our appointment. At no time within emails were we advised of a NonRefundable policy nevertheless we were lured into confirming Isobels appointment due to July being the busiest time of year due to the US being on school holidays.Email received 22nd April 2011 from                              Therapy 4 Kids 4026 N. Ocean Blvd Fort Lauderdale FL 33308Dionne I am happy that Isobel will be receiving the opportunity in Germany. We are very dedicated to all our kids that come and schedule with us. Our policy for the deposit is NON Refundable due to having held the spot.  The Great news is you will NEVER lose the Deposit you may ...</description>
<dc:date>2011-5-11 12:53:30</dc:date>
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<title>Good News this week</title>
<link>http://www.friendsofisobel.com/page11.htm#91781</link>
<description>Isobel has been approved for her Hart walker although it has taken 18 months of persisting the paperwork is in motion. Isobel will still have to wait up to six months for the process to be finalised. It is disheartening to know this time spent without it delays her development but all in all Isobel will be on her feet at last.
Isobels has been remeasured for her wheelchair with a more suitable outcome again it may be 10 to 11 months from the initial consult before she is sitting in it however it is a more appropriate longterm result.
Finally since further correspondence with xcell centre in Germany they have agreed to their original offer and confirmed Isobels appointment for 18th July 2011. Now the pressure is on to ensure Isobel gets back there on time. </description>
<dc:date>2011-4-15 10:03:28</dc:date>
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<title>xcell response</title>
<link>http://www.friendsofisobel.com/page11.htm#90669</link>
<description>dear  madameSorry to say but I am not happy with the underlying tone of your email. Your sentence I know that it is not through is very upsetting me. Issam is a most honoust and respectful person. Of course we tell  everybody about our current treatment and to be honoust we are even more satisfied with iv mannitol as with lumbar. It is not in our hands that we had to change to another but even safer and at least similar effective treatment this was just force majeur. It goes without saying that if you have no result you can come back for second treatment with lumbar puncture just to compensate you without admitting any errors from our site. If you have positive results why should i offer you to come back at no costs Do you consider it fair that if you got a safe and effective treatment to come back without charges for a second treatment Moreover Why should you come back for iv mannitol if you dont like it anyway   Pls consider that we are also not a governmental institute and we have t...</description>
<dc:date>2011-3-31 11:11:45</dc:date>
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<title>xcell withdraw their offer</title>
<link>http://www.friendsofisobel.com/page11.htm#90637</link>
<description>Today we received word xcell are withdrawing their offer to perform Isobels treatment as planned.Dear Dr K KleinbloesemI have just received a phone call from Issam advising you are revoking your promise to provide Isobel with the procedure free of charge. You stated via email Wednesday November 03 2010 110 AM and I quote I feel with you as a mother and understand your position in full I also have kids and I would offer you to come back free of charge for a treatment of your child.For the travel costs however we don feel responsible. I hope that this email will help you and I hope that your child will benefit from the treatment.You applied no terms or conditions to this contract apart from travel costs which is blatantly punishing however we accept.  We have been working hard fundraising to get back to your clinic which is particularly challenging the second time around.Isobel had just undergone major hip surgery prior to our visit which admittedly set her back 15 to 18 months. Since re...</description>
<dc:date>2011-3-31 05:14:02</dc:date>
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<item rdf:about="link+11">
<title>Busy year ahead.</title>
<link>http://www.friendsofisobel.com/page11.htm#89218</link>
<description>Fundraisers this yearMarch  BrisbaneMay  BrisbaneOctober  SydneyPerth to be confirmed </description>
<dc:date>2011-3-14 22:57:09</dc:date>
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<item rdf:about="link+12">
<title>Isobel crawled.</title>
<link>http://www.friendsofisobel.com/page11.htm#88598</link>
<description>Isobel crawled today for the first time and not just a little way it was actually quite a distance for Isobel. Another milestone met.</description>
<dc:date>2011-3-6 06:32:20</dc:date>
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<item rdf:about="link+13">
<title>Productive couple of days</title>
<link>http://www.friendsofisobel.com/page11.htm#88597</link>
<description>Breaking news.  After eight long months Isobel finally received her wheelchair.  We also collected an abductor bar to keep Isobels hips apart while she sleeps.Isobel said the words please Jack and bag.Thats what I call a good day</description>
<dc:date>2011-3-4 06:30:12</dc:date>
</item>
<item rdf:about="link+14">
<title>The Road ahead.</title>
<link>http://www.friendsofisobel.com/page11.htm#87660</link>
<description>When everything seems to be doing ok it feels like another kick in the guts. Isobel had a couple of hospital appointments over the last two days one being with her hip surgeon where we learnt hip surgery is inevitable. Somewhat sooner than expected. He is reluctant to remove her pins as the tightness in her muscles is continuing to pull at her hips. He has suggested more therapy with the hope of holding surgery off. Ideally the soonest he expected if ever to do it again would have been when Isobel was eight years old it is now seeming she will be lucky if she makes it to five.This to me was just shattering. Isobel is only starting to get back on her feet from the last one which took place November 2009. I dont actually believe she has fully recovered. Although her pain seems to have gone she is still not weight bearing as she did. I just see this as yet another punishing set back. I truly believed things would just start getting better. It seems we still have some road ahead.</description>
<dc:date>2011-2-24 04:36:29</dc:date>
</item>
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<title>Improvements</title>
<link>http://www.friendsofisobel.com/page11.htm#87372</link>
<description>In the last two weeks Isobel has shown some truly extraordinary improvementsPulling herself up onto her knees in a crawling position today even crawling backward for the first time. Once on her knees is pushing back to sit on her feet pulling her body upright showing improved balance once more.The pool obviously provides buoyancy however Isobel has started side stepping independently with very little of my direction in the pool.Pulling up to stand in the pool.Izzy is progressively getting closer to pushing herself up into a sitting position.Although Isobel cannot get herself into sitting yet when propped can sit with her legs crossed for at least 20 minutes. This position was recommended to reduce leg spasms and improve upper body strength. We have only been adamant with this exercise over the last two weeks and have seen mass improvements.Lastly sounds are starting to sound more like words.It was like a switch was turned on. Very proud parents and to see the difference is truly reward...</description>
<dc:date>2011-2-20 11:12:11</dc:date>
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<title></title>
<link>http://www.friendsofisobel.com/page11.htm#85886</link>
<description>Next Event Family Day held 20th March 2011                    Get your wheels on             See Events page for details</description>
<dc:date>2011-2-1 00:00:36</dc:date>
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<item rdf:about="link+17">
<title>Yet another Blow</title>
<link>http://www.friendsofisobel.com/page11.htm#85688</link>
<description>This morning we arrived at Isobel PostBotox appointment as I would any other to be confronted with a few unexpected announcements.Generally a common question I ask at Isobels appointments is Will Isobel walk today without even asking the Doctor stated gracefully Isobel will find it easier to use a wheelchair. In other words Isobel will not walk however it would be easier for her to be able to reach and manoeuvre herself in and out of her chair so our efforts and hard work will not go to waste as Isobel will appreciate it in the future.The Doctor was then so kind to introduce me to the Intrathecal Baclofen Therapy. This involves a foreign computerised object to be inserted into Isobels body to administer ongoing doses of Baclofen through her spinal fluid. Isobel currently takes baclofen in a tablet form however this procedure would be more effective in relaxing her muscles. This procedure has only been in Australia since 2005 and administered to 16 people in Royal Brisbane Hospital. Thi...</description>
<dc:date>2011-1-27 23:10:42</dc:date>
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<item rdf:about="link+18">
<title>What to do</title>
<link>http://www.friendsofisobel.com/page11.htm#84803</link>
<description>Floods here in Queensland have just been devastating Extremely apprehensive and confused to how to go about raising funds for Isobel to get back to Germany amongst this disaster.   </description>
<dc:date>2011-1-17 10:27:05</dc:date>
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<item rdf:about="link+19">
<title>The bike is fitted</title>
<link>http://www.friendsofisobel.com/page11.htm#83414</link>
<description>Today Isobel continued on her 15 minute trek and to top it off we have rigged up a bike to sit on the treadmill for those times like the past few weeks where we havent been able to get outside for her ride. Now to get her talking. In the last two weeks Mummy has printed and laminated word cards and stuck them around the house. It has been working for her younger brother 17month old brother Jack. So fingers crossed.</description>
<dc:date>2010-12-28 09:08:56</dc:date>
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<title>15 Minute Mark</title>
<link>http://www.friendsofisobel.com/page11.htm#83413</link>
<description>Izzy hit the 15 Minute mark on the treadmill today. All this exercise and Isobels thighs are looking bigger than ever before. If she would only connect her mind with her body and walk.</description>
<dc:date>2010-12-26 09:05:39</dc:date>
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<title>Persuaded to do another workout</title>
<link>http://www.friendsofisobel.com/page11.htm#82856</link>
<description>So tonight had dinner ready to unwind and I hear this Mum Mum Mum.... coming from the gym room and Izzys hitting her treadmill I say not now honey its nearly time for bed. I leave the room. 3 minutes later Mum Mum Mum screaming from the Gym room now Izzys up on the treadmill trying to get into position.How could I say No What do you know we are into a full blown gym sesh at 730pm. Well I guess the positive is Mum will get fit quick.</description>
<dc:date>2010-12-16 11:30:24</dc:date>
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<title>Just a couple of steps</title>
<link>http://www.friendsofisobel.com/page11.htm#82651</link>
<description>Isobel received her vibrator plate last Thursday. This is one piece of gym equipment Izzy took to straight away and actually requests to use it more. Unfortunately she is only able to use it for 5 minutes at a time however she has been on it at least twice a day so far. It is suggested this machine will increase her muscles by 50 and increase the ability of balance. We were introduced to this at intense therapy in Unna Germany. I have noticed Isobels weight baring has improved even today continuing to take her own steps on the treadmill as I got up to turn it off. This is small steps but Wow what a moment.</description>
<dc:date>2010-12-13 09:53:32</dc:date>
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<title>12 Minutes</title>
<link>http://www.friendsofisobel.com/page11.htm#81631</link>
<description>Wow Isobel hit the 12 minute mark on the treadmill today only stopping once to give mummy a break. Mummys arms are starting to show just how much work is going into this.So little Miss Iz achieved a 30 minute ride 12 minute walk and a 30 minute swim. What a star</description>
<dc:date>2010-11-30 05:00:18</dc:date>
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<title>The Walls come down</title>
<link>http://www.friendsofisobel.com/page11.htm#81629</link>
<description>Well Daddy started on Isobels Gym today. The wall have been removed and we are ready to start planning her new room. All very exciting</description>
<dc:date>2010-11-27 04:58:08</dc:date>
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<title>The Big 10 Minutes</title>
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<description>Isobel hit the big ten minutes on the treadmill today of course we are still walking her feet for her. Although it is quite the achievement for Izzy with no crying.We have had the Hart Walker on trial for two weeks. Oh the pressure to make the most of that.</description>
<dc:date>2010-11-24 04:54:13</dc:date>
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<dc:date>2010-11-9 02:16:36</dc:date>
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<dc:date>2010-11-8 02:15:34</dc:date>
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<title>Sitting</title>
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<description>Isobel although can not put herself into sitting position when place in a chair on her trundle or on the steps is sitting stronger even allowing us to put her shoesboots on whilst she is there. I have noticed she is not even depending on her feet for balance as much. Izzy is holding her cup and placing it on the table and her appetite has improved immensely since being off the bottle. Isobel continues to use the sign for toilet as she did this morning before doing a number 1.</description>
<dc:date>2010-11-6 02:10:16</dc:date>
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<title>Legs</title>
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<description>Isobels legs seem to be crossing more than ever.Had an assessment done for Isobels Hart walker today the therapist discussed the improvement of Isobels flexibility of her hips. That was exciting So hopefully all will go well at next weeks trial and will be bringing one home for Isobel to work in for two weeks. It could be some time before the funds are raised to get it though. Total cost 12000. I just cant believe it.Brought Isobel a standing frame home to trial today too. She looks so much better in it. Will get some new pics up soon.</description>
<dc:date>2010-11-5 02:09:06</dc:date>
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<description>Isobels tantrums have been difficult to deal with. </description>
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Not sure if you have kept up with Isobels blog but keep
the story short. We trekked 27 hours to Dusseldorf to find out by another
parent in the waiting room Isobels procedure had changed from Lumbar Puncture
to I...</description>
<dc:date>2010-11-3 02:26:05</dc:date>
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<title>A new Sign</title>
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<description>Isobel learnt the sign toilet this morning she picked it up immediately then to follow did a number 2 on the toilet for the first time. Isobel is now pushing me away whilst on the loo showing her independence by sitting there on her own.</description>
<dc:date>2010-11-2 02:02:37</dc:date>
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<dc:date>2010-10-31 13:05:02</dc:date>
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<description>There has been a noticeable difference with Isobels eyes she appears to have more control and they dont seem to wonder so much.</description>
<dc:date>2010-10-29 13:03:22</dc:date>
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<title>More xcell website changes</title>
<link>http://www.friendsofisobel.com/page11.htm#79158</link>
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<dc:date>2010-10-28 13:13:31</dc:date>
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<title>xcells IV option</title>
<link>http://www.friendsofisobel.com/page11.htm#78887</link>
<description>Concerned today when I learned xcell has removed the IV option from their website. What does that meanIsobel started her new physio regime at home today. We have fitted out the treadmill and have a more structured routine including speech games.</description>
<dc:date>2010-10-27 12:54:44</dc:date>
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<item rdf:about="link+40">
<title>Were comin Home</title>
<link>http://www.friendsofisobel.com/page11.htm#78630</link>
<description>The start of our journey home. On the return we decided to change our flights to stop over in Singapore. This I am grateful for as Isobel again is not her quiet self. The 27 Hour journey to Germany was just too long and tiring and demanding with two depending babies.</description>
<dc:date>2010-10-22 10:38:59</dc:date>
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<title>Therapy Session at Unna</title>
<link>http://www.friendsofisobel.com/page11.htm#78627</link>
<description>Isobels bending her legs on her own accord is getting better  today attempting to conquer steps at her intense therapy session. I must say Isobel has become noticeably demanding having a tantrum on a daily basis. Im hoping its because she is missing home and her own surroundings.There is a noticeable difference in her eyes somehow seeming more wide eyed than tired or absent.The Centre at Unna believe if they had her in their therapy sessions for a month the would have her talking. I believe they could even have her crawling at least developing a better trunk and core strength. This particular therapy actually involves exercising and stimulating Isobel whilst she is asleep on top of everything else. I truly wish we had spent more time there. If only the xcell centre were more fair and reasonable with their charge for treating Isobel with IV rather than Lumber Puncture that money could have been extremely beneficial in this regard. I still cannot believe how much I learnt and how much mo...</description>
<dc:date>2010-10-21 10:22:46</dc:date>
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<item rdf:about="link+42">
<title>Isobel sitting</title>
<link>http://www.friendsofisobel.com/page11.htm#78631</link>
<description>Isobel is still not able to put herself into a sitting position however when we are helping her into this position her posture has improved out of sight. Izzy doesnt seem to favour her left side so much any more.</description>
<dc:date>2010-10-20 10:43:11</dc:date>
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<item rdf:about="link+43">
<title>Spasticity</title>
<link>http://www.friendsofisobel.com/page11.htm#78626</link>
<description>There is a noticeable difference in the spasticity of Isobels legs making it easier to sit her on our hip.</description>
<dc:date>2010-10-19 10:18:34</dc:date>
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<title>Daddy</title>
<link>http://www.friendsofisobel.com/page11.htm#78624</link>
<description>Isobel said Daddy for the first time ever today it was said repeatedly.</description>
<dc:date>2010-10-18 10:14:06</dc:date>
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<title>Isobel turned</title>
<link>http://www.friendsofisobel.com/page11.htm#78625</link>
<description>Isobel turned around completely in her high chair at breakfast this morning when hearing people speak at a table behind her. This is the first time this has happened but occurred on a number of occasions over breaky.</description>
<dc:date>2010-10-16 10:14:38</dc:date>
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<item rdf:about="link+46">
<title>Day of Implantation</title>
<link>http://www.friendsofisobel.com/page11.htm#78465</link>
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<dc:date>2010-10-15 20:44:14</dc:date>
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<title>Day before the Big Day</title>
<link>http://www.friendsofisobel.com/page11.htm#78282</link>
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<dc:date>2010-10-14 13:26:04</dc:date>
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<title>Bone marrow extraction.</title>
<link>http://www.friendsofisobel.com/page11.htm#77931</link>
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<dc:date>2010-10-13 18:50:35</dc:date>
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<title>Initial Consult</title>
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<dc:date>2010-10-12 18:42:05</dc:date>
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<dc:date>2010-10-11 18:14:31</dc:date>
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<item rdf:about="link+51">
<title>AJs Mechanical Solutuions</title>
<link>http://www.friendsofisobel.com/page11.htm#76935</link>
<description>AJs Mechanical Solutuions Minchinbury have kindly donated a Free Auto Service voucher to the value 143. Bidding closes 4pm 5th October 2010. Good Luck</description>
<dc:date>2010-10-3 12:49:25</dc:date>
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<item rdf:about="link+52">
<title>Contours</title>
<link>http://www.friendsofisobel.com/page11.htm#76643</link>
<description>Contours have donated a 3 month voucher to the value of 400 to use anywhere in New South Wales for us to auction. Please place your bid here on Isobels blog page. Bidding open til 4pm 3rd October 2010. Good Luck</description>
<dc:date>2010-9-29 10:38:01</dc:date>
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<item rdf:about="link+53">
<title>Treatment goes ahead.</title>
<link>http://www.friendsofisobel.com/page11.htm#73294</link>
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<dc:date>2010-8-19 12:55:14</dc:date>
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<title>Germany is Set for October</title>
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We have been in discussions with Germany this
week and although we are waiting for it in writing Isobel is set to meet with
Germany specialist in October. While it is exciting to have confirmation it
is also an extremely anxious time.</description>
<dc:date>2010-8-11 12:55:23</dc:date>
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<title>New Wheels</title>
<link>http://www.friendsofisobel.com/page11.htm#72149</link>
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Miss Isobel was fitted for her first wheelchair
today. It has taken twelve months for us to move toward accepting it and
unfortunately it will be more long term than we had hoped but whatever gives Isobel
her independence. Lets just get her to Germany I say.</description>
<dc:date>2010-8-5 09:55:58</dc:date>
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<item rdf:about="link+56">
<title>Botox Day</title>
<link>http://www.friendsofisobel.com/page11.htm#68396</link>
<description>
 
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Isobel was yet again incredible brave although
her initial cautious reaction to the hospital remains the same it was not
nearly like past experiences. Daddy did let Isobel eat chalk on the day Mummy
was dobbed on for eating in the wrong area and Jack remained supportive and
patient as always. It is hard however to see the other children reminding us of
where Isobel is headed.</description>
<dc:date>2010-6-18 06:19:33</dc:date>
</item>
<item rdf:about="link+57">
<title>The Boo</title>
<link>http://www.friendsofisobel.com/page11.htm#66498</link>
<description>What a day Details and photos to come. Brisbane put on a beautiful day</description>
<dc:date>2010-5-30 13:51:42</dc:date>
</item>
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<title>Isobel Conquered the Gateway Bridge Opening</title>
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Isobel conquered the Gateway Bridge today
3.5klm in all peddling away on her bike in preparation for the Brisbane Bridge
to Bridge. Nice Work Isobel 

I have noticed since Isobel has been out venturing her smile is larger than
ever. 

This evening Isobels day ended with relaxing Lavender bath and massage with words
we have never heard Isobel say before Cat Cow and Sheep. Great conclusion to a
spectacular day.</description>
<dc:date>2010-5-16 11:46:23</dc:date>
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