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						<title><![CDATA[Tillys Appeal Fund - Blogs]]></title>
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					  <title><![CDATA[Tilly Update]]></title>
					  <link>http://www.tillysappealfund.com/blogs/103/Tilly-Update.html</link>
					  <description><![CDATA[Apologies for the poor administration but this is due to the fact that Tilly has spent a lot of time at Great Ormond Street lately so Debra is stretched between Tilly &#38; Oliver.&#160; To add, I have spent some time working 200 miles north of home in Sheffield.Tilly has been struggling somewhat with the condition so we have had to increase her steroid dose back to 5mg.&#160; We try to reduce the dose over a period of time, but when we get around 3mg the problems start again.&#160; It takes Tilly some time to even get out of her bed of a morning and we, 9/10, have to add a dose of nurofen to her lengthy medication list.To add to the above, we have just been informed that Tilly is suffering with kidney stones again and so potassium citrate has been returned to the list of med's.We are due on the US over the coming months for Tilly's research programme, which she dreads bless her.&#160; In addition we need to visit the hip surgeon again as Tilly's left leg is causing her pain and the hip may have dislocated further.Will try to keep you updated as much as possible and thank you for taking the time to keep in touch with Tilly's progress.Kind regardsColin ]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Sat, 30 Jan 2010 00:00:00 CST</pubDate>
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					  <title><![CDATA[Tilly Update]]></title>
					  <link>http://www.tillysappealfund.com/blogs/102/Tilly-Update.html</link>
					  <description><![CDATA[Apologies for the poor administration but this is due to the fact that Tilly has spent a lot of time at Great Ormond Street lately so Debra is stretched between Tilly &#38; Oliver.&#160; To add, I have spent some time working 200 miles north of home in Sheffield.Tilly has been struggling somewhat with the condition so we have had to increase her steroid dose back to 5mg.&#160; We try to reduce the dose over a period of time, but when we get around 3mg the problems start again.&#160; It takes Tilly some time to even get out of her bed of a morning and we, 9/10, have to add a dose of nurofen to her lengthy medication list.To add to the above, we have just been informed that Tilly is suffering with kidney stones again and so potassium citrate has been returned to the list of med's.We are due on the US over the coming months for Tilly's research programme, which she dreads bless her.&#160; In addition we need to visit the hip surgeon again as Tilly's left leg is causing her pain and the hip may have dislocated further.Will try to keep you updated as much as possible and thank you for taking the time to keep in touch with Tilly's progress.Kind regardsColin ]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Sat, 30 Jan 2010 00:00:00 CST</pubDate>
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					<item>
					  <title><![CDATA[Tilly Update]]></title>
					  <link>http://www.tillysappealfund.com/blogs/101/Tilly-Update.html</link>
					  <description><![CDATA[Apologies for the poor administration but this is due to the fact that Tilly has spent a lot of time at Great Ormond Street lately so Debra is stretched between Tilly &#38; Oliver.&#160; To add, I have spent some time working 200 miles north of home in Sheffield.Tilly has been struggling somewhat with the condition so we have had to increase her steroid dose back to 5mg.&#160; We try to reduce the dose over a period of time, but when we get around 3mg the problems start again.&#160; It takes Tilly some time to even get out of her bed of a morning and we, 9/10, have to add a dose of nurofen to her lengthy medication list.To add to the above, we have just been informed that Tilly is suffering with kidney stones again and so potassium citrate has been returned to the list of med's.We are due on the US over the coming months for Tilly's research programme, which she dreads bless her.&#160; In addition we need to visit the hip surgeon again as Tilly's left leg is causing her pain and the hip may have dislocated further.Will try to keep you updated as much as possible and thank you for taking the time to keep in touch with Tilly's progress.Kind regardsColin ]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Sat, 30 Jan 2010 00:00:00 CST</pubDate>
					  <subject />
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					<item>
					  <title><![CDATA[Tilly Update]]></title>
					  <link>http://www.tillysappealfund.com/blogs/100/Tilly-Update.html</link>
					  <description><![CDATA[Apologies for the poor administration but this is due to the fact that Tilly has spent a lot of time at Great Ormond Street lately so Debra is stretched between Tilly &#38; Oliver.&#160; To add, I have spent some time working 200 miles north of home in Sheffield.Tilly has been struggling somewhat with the condition so we have had to increase her steroid dose back to 5mg.&#160; We try to reduce the dose over a period of time, but when we get around 3mg the problems start again.&#160; It takes Tilly some time to even get out of her bed of a morning and we, 9/10, have to add a dose of nurofen to her lengthy medication list.To add to the above, we have just been informed that Tilly is suffering with kidney stones again and so potassium citrate has been returned to the list of med's.We are due on the US over the coming months for Tilly's research programme, which she dreads bless her.&#160; In addition we need to visit the hip surgeon again as Tilly's left leg is causing her pain and the hip may have dislocated further.Will try to keep you updated as much as possible and thank you for taking the time to keep in touch with Tilly's progress.Kind regardsColin ]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Sat, 30 Jan 2010 00:00:00 CST</pubDate>
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					  <title><![CDATA[Tilly is 12 Today!!]]></title>
					  <link>http://www.tillysappealfund.com/blogs/99/Tilly-is-12-Today.html</link>
					  <description><![CDATA[Tilly was 12 today and her wonderful friends and family helped to make for a special birthday weekend.
Tilly's mum worked so hard to ensure that Tilly had a wonderful and happy time.We are so proud to have such a beautiful and brave daughter, we are blessed.]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Mon, 26 Oct 2009 00:00:00 CDT</pubDate>
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					  <title><![CDATA[Tilly has grown!!!]]></title>
					  <link>http://www.tillysappealfund.com/blogs/98/Tilly-has-grown.html</link>
					  <description><![CDATA[I have just had a call from Debra and Tilly, in the car on way back from GOSH, and heard Tilly whooping with delight!She has grown 3.5cms in the past 6 weeks, which is 30 times the rate she has worked to for the past 7-8 years!Tilly told me that she would soon be the same size as JLS and bigger than her brother!!!]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Wed, 07 Oct 2009 00:00:00 CDT</pubDate>
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					  <title><![CDATA[Tilly&#39;s Progress]]></title>
					  <link>http://www.tillysappealfund.com/blogs/97/Tillys-Progress.html</link>
					  <description><![CDATA[Following a period of a few concerns as to Tilly's well-being, a few drug changes have&#160;been made. In addition, we have been administering growth hormone in the hope that Tilly may grow although there is no guarantee as her steroid intake may impact the possibility, fingers crossed!We have noticed a difference in Tilly's general well-being on a day to day basis and her latest blood results are the best for some time.&#160; Her condition appears to be under control at present, which is a blessing.Her favourite interest for some time now???&#160; JLS!!!&#160; She has been fortunate to meet them on two occasions and has received presents from the boys!&#160; They are so nice and a credit to their parents.&#160; Tilly absolutely loves them and comes to life whenever she hears or see's them, it's lovely to watch but very noisey!Love to you allX]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Thu, 03 Sep 2009 00:00:00 CDT</pubDate>
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					  <title><![CDATA[Tilly]]></title>
					  <link>http://www.tillysappealfund.com/blogs/96/Tilly.html</link>
					  <description><![CDATA[Tilly is doing ok and recently started growth hormone treatment.&#160; We have been discussing for a long time and finally got the go ahead, which was Tilly's wish.&#160; Another daily injection but she is so desparate to grow she does not flinch at all when it is administered by us at home.Mark Stevens and Colin Neale contacted us recently and kindly decided to donate the proceeds of their annual golf society event to the fund.&#160; I attended and thanked everyone for there support, a great bunch of guys that were very genuine.We will start to update the site again and apologies for the delay in posting updates.Kind regards
Colin]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Wed, 29 Jul 2009 00:00:00 CDT</pubDate>
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					  <title><![CDATA[George &#38; Dragon Fund Raising]]></title>
					  <link>http://www.tillysappealfund.com/blogs/95/George--Dragon-Fund-Raising.html</link>
					  <description><![CDATA[
A kind friend, Denyse Coughlan, contacted the new Management Team of the George &#38; Dragon and asked if they would support the Fund.The George &#38; Dragon has undergone an amazing refurbishment over the past few months.&#160; The re-launch was held last night and attracted a large attendance.&#160; The place looked amazing and the staff were very professional.Please see link below to Gazette coverage of last nights event:http://www.thisistotalessex.co.uk/gazette/BRENTWOOD-Funds-running-low-Tilly/article-850522-detail/article.htmlWe sold tickets last night for a number of great prizes at &#163;5 per ticket and the response was great.&#160; Me and my sister sold tickets along with two kind staff members and with the generosity of the attendees, we managed to raise an amazing &#163;860 for Tilly's Appeal Fund.Thank you for everyone that was involved and to those that contributed.Kind regardsColin &#38; Debra]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Fri, 27 Mar 2009 00:00:00 CDT</pubDate>
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					  <title><![CDATA[PayPal]]></title>
					  <link>http://www.tillysappealfund.com/blogs/94/PayPal.html</link>
					  <description><![CDATA[Although we finally managed to transfer the money to the Appeal Fund, the problems we encountered with PayPal have given us concerns about the service(s).We have decided to take PayPal off the site.&#160; Please contact us should you wish to donate to 'Tilly's Appeal Fund' at; colinbailey828@btinternet.comThanks and regardsColin &#38; Debra]]></description>
					  <author>Colin Bailey</author>
					  <pubDate>Mon, 09 Mar 2009 00:00:00 CDT</pubDate>
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