tag:blogger.com,1999:blog-56673391618159929512024-02-21T22:19:06.291+11:00Life with BealsA blog to explore the rare genetic disorder Beals SyndromeLouisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.comBlogger55125tag:blogger.com,1999:blog-5667339161815992951.post-54926197445542661562023-03-18T18:54:00.001+11:002023-03-18T19:00:51.682+11:00The end of an era<p><span style="font-family: helvetica;">The time has come!</span></p><p><span style="font-family: helvetica;">At Evie's lengthening last year her rods were reluctant to lengthen. After a check of her bone age and growth plates the surgeon informed us that the time had come for Evie to have her final spinal fusion.</span></p><p><span style="font-family: helvetica;">Today we headed to Sydney for the surgery Monday afternoon.</span></p><p><span style="font-family: helvetica;">It will involve removing the current Magec rods, then placing 2 x new rods, fixing them to her spine at multiple points and fusing her spine in place. It will mean no more growth for her spine, however the rest of her body may still lengthen.<br /></span></p><p><span style="font-family: helvetica;">It is bitter sweet. It is a very daunting prospect to have such a large and intensive surgery, for both Evelyne and I. However it also means no more lengthenings and no more surgeries.</span></p><p><span style="font-family: helvetica;">For 7 years Evie was casted and braced to hold off for her first surgery. We were told we would only get about 5 years out of growing rods before her spine would spontaneously fuse so we tried to wait as long as possible. She managed through 7 years of Magec rods, with 3 sets of rods and 24 lengthenings. We are incredibly grateful she had no complications in all that time. Her surgeon says she is one of his top success stories!</span></p><p><span style="font-family: helvetica;">Whilst we are both a bit of an emotional mess, it is a comfort to know we have a God who cares and has a plan for us. We hold close to that knowledge at this time. Evie's favourite verse is the one below:</span></p><p><i><span style="font-family: helvetica;"><span class="text Phil-4-6" id="en-NIV-29449" style="background-color: white;">"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.</span><span style="background-color: white;"> </span><span class="text Phil-4-7" id="en-NIV-29450" style="background-color: white;">And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." </span></span><span style="background-color: white; font-family: helvetica;">Phillippians 4:6-7</span></i></p><p><span class="text Phil-4-7" face="system-ui, -apple-system, "Segoe UI", Roboto, Ubuntu, Cantarell, "Noto Sans", sans-serif, Arial" style="background-color: white; font-size: 16px;"><br /></span></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjauYbiYOuYCsqJ-pctxY-Mtk7Z1XHFFYvwQJztG8XKDZRcq1EQaSO4wc8phMQucHCYyBgCR4QLxXo_swcj3ro9Pr8D5HdSFDdJXaIgiQ86tkB71NKwt11FBcc6pZRQMgnpFPBXsAnJc3DiyQPiHRwFvDjc--WZhWqnQsTKZ5Rm_WMsFFluviw_ejB4" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="1002" data-original-width="1502" height="427" src="https://blogger.googleusercontent.com/img/a/AVvXsEjauYbiYOuYCsqJ-pctxY-Mtk7Z1XHFFYvwQJztG8XKDZRcq1EQaSO4wc8phMQucHCYyBgCR4QLxXo_swcj3ro9Pr8D5HdSFDdJXaIgiQ86tkB71NKwt11FBcc6pZRQMgnpFPBXsAnJc3DiyQPiHRwFvDjc--WZhWqnQsTKZ5Rm_WMsFFluviw_ejB4" width="640" /></a></div><br /><br /></div><br /><p><br /></p>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-58992199723289811762022-09-01T14:48:00.153+10:002023-03-18T19:00:43.336+11:00Life with Beals in 2021-2022<p> A well overdue update!<br /><br />The last surgery at the beginning of the first lockdown feels like a lifetime ago. </p><p>Surgery during lockdown was very difficult. We were in a public ward, with lots of noise, people coming and going at all hours, and limited space. It was difficult not being able to leave the room or have any visitors also. Yet again there were issues with managing the pain, but once we made it home all was well.</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcz1y7UK3sPuAotY9hmA-Hs793Ln283RgkGdbIbxgZWrcHcxb1yLhJJIq3MxFsxQiVjVNaeBCybeE7VxwNMU43fFFDsdm9aZpzpxK2zMkQSdeRzW1NpEJprnWOi_LG0ftgX9MyUI38kZhbykQ_RvtWm4sokF3JZwixowP28BtN6tkq37L37n8N7To2/s2989/hospital.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="954" data-original-width="2989" height="204" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcz1y7UK3sPuAotY9hmA-Hs793Ln283RgkGdbIbxgZWrcHcxb1yLhJJIq3MxFsxQiVjVNaeBCybeE7VxwNMU43fFFDsdm9aZpzpxK2zMkQSdeRzW1NpEJprnWOi_LG0ftgX9MyUI38kZhbykQ_RvtWm4sokF3JZwixowP28BtN6tkq37L37n8N7To2/w640-h204/hospital.jpg" width="640" /></a></div><div><br /></div><p>Evie recovered well and has continued to love music, art and had a great end to year 6.</p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXqE_LH_71UTxMWQY_t46xDiKdvvJDzxYnhgW1YpxCWjTUgRQHfx8LBxfqTyXcLua4d8F8sTBuPIyn0XZIa-94p_UBl_55778ewTvpybKKJDkAxLuU_17ex0AaT3qtHHZCTj512IOaUUDcOhDEL19Q7W4pw_yJeBTq1kVa-B4fdk4V6nHnA8JmkORV/s1995/Evie.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="835" data-original-width="1995" height="268" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXqE_LH_71UTxMWQY_t46xDiKdvvJDzxYnhgW1YpxCWjTUgRQHfx8LBxfqTyXcLua4d8F8sTBuPIyn0XZIa-94p_UBl_55778ewTvpybKKJDkAxLuU_17ex0AaT3qtHHZCTj512IOaUUDcOhDEL19Q7W4pw_yJeBTq1kVa-B4fdk4V6nHnA8JmkORV/w640-h268/Evie.jpg" width="640" /></a></p><p>She was one of the leads in our local musical in year 7 and continued to thrive in all areas. Yes she still required lengethings every 3 months, but all in all, life now looks vastly different than it did in the early days. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOwg0aq6iX0g_iGiUDE07CXeoKduphh2JtZ2VWl55kIcnHgHWkDcwxos6338n6kYGcGwC3hSXrvOKdB-K80xVLRynFPwz7SZHGHAm9n2fjC9uNeWikO8VE4NvCOaip3OwWFRvT0sb0AYpXJfNxzAZTkl4wLJ66brVoCmbp9XH70BqPJNpxDjt1LPkq/s2000/Evie4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="646" data-original-width="2000" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOwg0aq6iX0g_iGiUDE07CXeoKduphh2JtZ2VWl55kIcnHgHWkDcwxos6338n6kYGcGwC3hSXrvOKdB-K80xVLRynFPwz7SZHGHAm9n2fjC9uNeWikO8VE4NvCOaip3OwWFRvT0sb0AYpXJfNxzAZTkl4wLJ66brVoCmbp9XH70BqPJNpxDjt1LPkq/w663-h214/Evie4.jpg" width="663" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p>Whilst initially worried about how she would cope at our local high school with it's large grounds and many stairs, she has managed them well with some adjustments. She is able to use a key for the school lifts, and we have arranged with her teachers for her to complete her work on an ipad rather than carrying a heavy backpack of books around. She is not a fan of school sport or PE, but loves the beach, walking the dog and dancing when no-one is watching!</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimgrkQKOw9F4w87SnIGydaYpCZ2OfLlgSXbHlTysv3P6OPTjihug7dyR5WDg-W4H3VWiqKckVJhYv8bQ80BmXxCHUo_YbfdmeIN6UUP9HPsSI9P-hyKlrh4Q0tlz2heCoMxUuhJPUhXKmEI2XlnnZ2WpSRN53rPK7W701pEHPmsr-Z5dlOME0kUxv-/s1829/Evie%203.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="721" data-original-width="1829" height="252" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimgrkQKOw9F4w87SnIGydaYpCZ2OfLlgSXbHlTysv3P6OPTjihug7dyR5WDg-W4H3VWiqKckVJhYv8bQ80BmXxCHUo_YbfdmeIN6UUP9HPsSI9P-hyKlrh4Q0tlz2heCoMxUuhJPUhXKmEI2XlnnZ2WpSRN53rPK7W701pEHPmsr-Z5dlOME0kUxv-/w640-h252/Evie%203.png" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p><br /></p>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-19261590596748789482020-04-08T11:46:00.002+10:002020-04-08T12:15:22.683+10:00More challenges in troubled times, another Spinal Surgery!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkWSUeaioE0oTM3vFq4MKNf7Al_c42tQNX0fgTq20WbgfuxzeLx8RpxWBlFtRZPo4MVdOMT8g6tTDrDXXpFZ9fsAsIdnhpWFnSYS8APmheb0dMiCIqYFFl-uP6yXHuOMnK2NSM-w9b2Gg/s1600/20200408_114437.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkWSUeaioE0oTM3vFq4MKNf7Al_c42tQNX0fgTq20WbgfuxzeLx8RpxWBlFtRZPo4MVdOMT8g6tTDrDXXpFZ9fsAsIdnhpWFnSYS8APmheb0dMiCIqYFFl-uP6yXHuOMnK2NSM-w9b2Gg/s400/20200408_114437.jpg" width="225" /></a></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;">We found out a couple of months ago that Evie has almost grown out off her current set of spinal rods. It was not a surprise, and we were pleased to be able to pick the date for the surgery we wanted, mid-year, to fit in with school holidays, and a good amount of time to recover before end of year activities and high school.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">As Australia followed the rest of the world into shut down due to Covid-19, like many others, I've been struggling with the new reality of having the kids learning from home, whilst I try to work from home as well. There was also the added worry of keeping Evie away from the virus due to her lung condition.</span></span><br />
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Then a phone call came. All elective surgeries had been cancelled. However Evie's spinal surgery did not fall in that category, as she would not last indefinitely without the new rods to allow her body to grow. As such, her surgery was made Category 1, and we had a new date, April 17. This added another added layer of anxiety.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Of course, as many of you know, the prospect of surgery in itself is extremely hard. Those who know us, or have read previous posts would know that the pain for Evie is extrordinary, and me watching her, it is awful. Add in the additional risk of Covid-19, a hospital in lockdown which means Jon and Sam can't visit, not being able to see grandparents, or stay with them after for more recovery time, all this is overwhelming to say the least.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">The last couple of weeks have been hard, and will be until after this is all over. So many aspects about what is going on at the moment are completely out of my control. All I can do is trust God that Evie is in His hands. Whilst hard, it is a </span><span style="background-color: white; color: #222222;">comfort to know I need not fear, but I can call out to Him in hard times.</span></span><span id="docs-internal-guid-6cebf916-7fff-2dd8-07fd-7e069449d07c"><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></span></span><br />
<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This Psalm from the Bible is so comforting right now.</span></span><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">Psalm 46</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">1 God is our refuge and strength,</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> an ever-present help in trouble.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">2 Therefore we will not fear, though the earth give way</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> and the mountains fall into the heart of the sea,</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">3 though its waters roar and foam</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> and the mountains quake with their surging.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">4 There is a river whose streams make glad the city of God,</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> the holy place where the Most High dwells.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">5 God is within her, she will not fall;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> God will help her at break of day.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">6 Nations are in uproar, kingdoms fall;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> he lifts his voice, the earth melts.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">7 The Lord Almighty is with us;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> the God of Jacob is our fortress.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">8 Come and see what the Lord has done,</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> the desolations he has brought on the earth.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">9 He makes wars cease</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> to the ends of the earth.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">He breaks the bow and shatters the spear;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> he burns the shields with fire.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">10 He says, “Be still, and know that I am God;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> I will be exalted among the nations,</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> I will be exalted in the earth.”</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">11 The Lord Almighty is with us;</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;"> the God of Jacob is our fortress</span></span><span style="background-color: white; color: #888888; font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><br /></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: #222222;"><br /></span></span>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-74007211592331228122020-04-02T12:51:00.000+11:002020-04-02T12:51:09.087+11:00'Normal' Life. 6 months in the life of Evelyne - end of 2019I wrote most of this post before the global pandemic we are now in, but found it still in my drafts. So bear in mind, this was all from the end of 2019.<br /><br />......................................................................................<br />
<br />I've had a number of people ask what life is like for Evie now.<br />
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As I've previously written, life was hard in the early days. Casts, braces, the unknown.<br />
Life is so different now. Not always easy, but so much better.<br />
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Evie loves dancing, singing, performing. We discovered she can do all these things through our local Junior Theatre Company. She danced up a storm in her year 5/6 dance group in the local eisteddford, coming 2nd, and performed in the combined school choir at the Sydney Opera House.<br />
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There are, of course, still some difficulties<br />
- 60% lung capacity means it is difficult sometimes to clear the chest when she gets sick, and we still resort to the nebuliser most winters.<br />- she has other joints that can be problematic such as her knees. This last year she has had a number of subluxed patellas (where her knee cap slips out of place, then back in again)<br />
- as well as the regular lengthenings and xrays.<br />
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She rounded off 2019 being badged School Captain for 2020. A great achievement!<br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-67492715555197768742019-06-01T22:02:00.001+10:002019-06-01T22:56:28.903+10:00June - Scoliosis Awareness Month<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Yet again I've left it over a year between posts! There are probably many reasons. Busyness, less changes in Evelyne, more stability as she ages, or maybe I don't 'need' to put my feelings and thoughts down like I used to. Not sure. But I have been again reminded recently how helpful my blog has been to others over the years. I started this blog as there was little to no info out there about Beals Syndrome. Now 8 years later not much has changed. There is still barely anywhere to find out about Beals Syndrome, and even less helpful information for a new parent faced with an unknown diagnosis.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I am frequently contacted my young mums and dads faced with a baby who doctors 'suspect' has Beals Syndrome. They turn to google to look for answers to no avail, just as I did. It brings me straight back to the uncertainty I felt. Holding my little baby and unsure of the future. I have been encouraged by them to continue writing our story down, so here I am!</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgECtCb5ju3q5zITNWzcbDbLcpW74AHcSEeDpER50VQjqX8QV03sCzuwvpShotq0ZMKpk5QgmYamgOI8juJh-IWNcw9_l_PlqGXlzME4vl0h9jeHp5C_lxhYtBVJrnD6rwnDMoWOe_lzSI/s1600/DSC_6594.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><img border="0" data-original-height="1067" data-original-width="1600" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgECtCb5ju3q5zITNWzcbDbLcpW74AHcSEeDpER50VQjqX8QV03sCzuwvpShotq0ZMKpk5QgmYamgOI8juJh-IWNcw9_l_PlqGXlzME4vl0h9jeHp5C_lxhYtBVJrnD6rwnDMoWOe_lzSI/s640/DSC_6594.JPG" width="640" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Evelyne - enjoying mushroom picking in the forest this Autumn</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I have spent the last month looking back through photos as I was thinking of writing a post about how far Evie has come. But where do I start! The early years of casting and bracing, the photos of her in appointments and procedures, or the photos of her showing her determination to be a kid despite her physical struggles. She has been through so much and continues to amaze me.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">With June being scoliosis awareness month I am again motivated! Whilst there is so much more to Beals Syndrome, for Evie, her scoliosis has been by far the biggest impact to her life.<br />When she was just a tiny baby, 10 weeks old, I noticed a bump on her back and realised something was not right. It did not take long before we realised she had a rapidly progressing kyphoscoliosis, which meant her spine was curving outwards as well as sideways. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Over the past 10 years Evie has gone through 4 casts, 9 braces, 2 major surgeries and 12 lengthenings. The years of casting and bracing were not easy with the effect to her lungs, mobility and energy levels. Whilst surgeries and lengthenings are also hard and risky, Evie is now growing taller, stronger, has more lung capacity and thrives in so many ways. You would not know what she has been through to see her now, and many new friends are astounded when I share her story. She loves singing, debating, public speaking, musical theatre, art and craft, and brings joy to so many people. We are so grateful for the amazing medical assistance we get here in Australia, our wonderful Orthopaedic Surgeon and the new technology that is available.</span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-23069112545853031702018-04-30T16:28:00.000+10:002018-04-30T16:28:08.291+10:00Broken Bones<br />
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<span style="font-family: "trebuchet ms" , sans-serif;">At the end of the January school holidays Evelyne broke her arm. Not just any
break of course! A complete displaced fracture of the upper humerus, almost
compact, but thankfully didn’t quite make it through the skin! </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">It was an
ordinary day at the park with Evelyne doing an ordinary activity for a 9 year old
– climbing on monkey bars. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">It ended with her on the ground, an obvious serious injury and a Triple Zero phone call for an ambulance. </span><span style="font-family: "trebuchet ms", sans-serif;">Leading to transport to another hospital, a 'closed reduction' in theatre under general anaesthetic, 3 days in hospital getting pain under control, 2 weeks in a traction cast and a further 4 weeks in a shoulder immobiliser sling. The positive news was that her spinal rods were not impacted!</span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">It’s one of those difficult questions parents with
Beals kids (and others) will face. How much do we protect and wrap in cotton wool, and how
much do we let them go and be normal kids? It is a balance I’ve struggled with
over the years. Sometimes I think I’ve restricted her too much due to worrying
about injury. But the fact is, she is going to be at a higher risk of all sorts
of injuries. Joint injury and dislocation, risk to damaging spinal rods, and it
appears broken bones as well. At school she is not allowed on the play equipment, is restricted from many sports activities and has an aide to watch her in the playground. This has made it hard for her over the years, as she at times comes home from school upset that she was left out of the action. At home, we are slightly more relaxed, and really just ban trampolines, bouncing castles, and I may add monkey bars to the list.<o:p></o:p></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Whilst I’ve never had definite confirmation, it does appear
that Beals Syndrome is associated with lowered bone density. One study I read said 'generalised osteoporosis is well documented'.<span style="mso-spacerun: yes;"> </span>Many years ago, another Beals mum spoke of
bone density testing, so I had Evelyne’s checked. At the time her results came
back as normal. Apart from some minor reduction in the spinal column, but that
was explained by lack of use as it was in the days of her being in casts and
braces. From my reading, bone density can often be lower in individuals with reduced physical activity, reduced strength activity, low body weight and small frames and that p</span><span style="font-family: "trebuchet ms" , sans-serif;">hysical activity is widely acknowledged </span><span style="font-family: "trebuchet ms" , sans-serif;">as a factor in increasing bone
density. </span><span style="font-family: "trebuchet ms" , sans-serif;">So perhaps the lowered bone density in Beals Syndrome is by association with lowered activity and low body weight. Either way, it still brings me back to the same conundrum. </span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;">Evelyne is now 12 weeks post break and her arm has healed beautifully. She is about to start physio to get full range of motion back in the shoulder and is looking forward to starting back at Jazz dancing. In regards to my thoughts on physical activity, I'm happy with most of our decisions with restriction vs allowance. In reality, she is often much happier doing drawing and craft than sports and she enjoys her dancing which she will continue. I do think there is more we could do for joint protection rather than just avoiding certain activities, as her knee has partially dislocated twice. Evelyne is fortunate to have been granted an NDIS package (National Disability Insurance Scheme in Australia). With some of her funds she will start seeing an Exercise Physiologist to help strengthen her joints, increase endurance, as well as some hydrotherapy and swimming. We are both looking forward to seeing the benefits. </span></div>
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com2tag:blogger.com,1999:blog-5667339161815992951.post-78694304966308315362017-09-24T13:09:00.001+10:002017-09-24T13:12:12.387+10:00Second surgery - new rods<span style="font-family: "trebuchet ms" , sans-serif;">Two weeks ago Evelyne had another major surgery to remove her old Magec rods and insert new longer rods. Since her first surgery, Evie has been lengthened every 3 months, and reached the end length of her rods sooner than expected. A result of a Beals Syndome catch 22. Whilst the flexibility in the connective tissue is what made Evelyne's spine super bendy in the first place, the flexibility also meant her surgeon could straighten her relatively quickly, thus running out of length.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Leading up to the surgery Evie (and myself) were very anxious. Unfortunately having been through it before meant we were not looking forward to the surgery or aftermath. Anticipating the pain she would be in was the main worry. We distracted ourselves by planning a brilliant 9th birthday party the weekend before. As well as a bit of activity planning, relaxation oils, music downloads and lots of prayer.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The operation was longer than expected, so Jon and I were pleased when the surgeon emerged to tell us it was all over and she was in recovery. He informed us that much to his surprise, the existing screws had come loose in her spine. In his wording, two were extremely loose and one was "swinging in the breeze"! He was surprised that she had not been experiencing associated pain. We had hoped the surgeon would be able to just replace the actual rods, however, he had to remove all 4 screws, with 3 larger diameter screws, whilst having to drill a new hole for the 4th. He was happy that the anchors were now very secure and as a result she won't have the same restrictions as her first surgery. He was also confident that her recovery would be quicker than last time. All in all, very positive news.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">The following days in hospital were still painful and long. Long days and nights with frequent repositioning required. Evie also had some issues with pressure injuries this time, but as an OT, I'm glad to be in the right industry to know how to deal with these! We were prepared with movies, music and audio books, and the DVD stand was again a godsend. Overall, everyone was pleased with her progress and she was able to get up and walk earlier than last time. The surgeon was happy with her x-rays, so we left hospital on her birthday with a bit of determination to get out of there! </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">For the last week Evie and I have stayed in Sydney, at our 'home away from home'. My parents have opened up their home, and in fact partially designed their house with Evelyne's medical appointments and recoveries in mind. I am so grateful to have this provision, and my mum to look after us! We have enjoyed many hours of colouring, visits from cousins, craft activities, movies, and our now tradition of her first outing to Cold Rock Icecream. It has been a smoother process this time, knowing what the main issues would be. So were well set up with a lowered bed, lots of pillows, shower chair and toilet rails brought from home. </span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Today we have finally made the trip home to Bathurst. Dosed up on pain meds and lots of pillows, it is always sad to leave my parents, but will be so good to be home!</span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com1tag:blogger.com,1999:blog-5667339161815992951.post-56187306408441088122017-08-27T15:43:00.000+10:002017-08-27T15:43:58.844+10:00Dr Min Mehta<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Dr Min Mehta passed away yesterday in the UK. She was a pioneer in the understanding of infantile scoliosis and her research into scoliosis and treatment has changed the outcomes for many children across the world.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">The below is an excerpt from the Infantile Scoliosis Project website on her life and achievements.</span><br />
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<span style="color: #134f5c;"><a href="http://www.abilityconnectioncolorado.org/infantilescoliosis/about/min-h-mehta-m-d-f-r-c-s/" target="_blank"><span style="font-size: large;">Min H. Mehta, M.D., F.R.C.S</span></a><span style="font-size: small;"><br /></span></span></h1>
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<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">“From the age of six, I always knew I wanted to be a doctor. That is true; it has never changed” says Dr. Min Mehta about her life’s work. “Miss” Mehta, as she is respectfully called by her British colleagues, is the world’s foremost expert on infantile scoliosis.<br /></span><br />
<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Miss Mehta tells the story of discovering her own adolescent scoliotic curve. “At about age 11 ½,” she recounts, “my parents and other adults began to tell me to ‘sit up straight.’ At last a family friend–a nurse–said, ‘the child can’t sit up straight – she has a scoliosis.’” And, Dr. Mehta observes, the process of detecting scoliosis hasn’t changed much over the years.<br /></span><br />
<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Dr. Mehta attended medical school in her native Calcutta, India. During the course of her training, she discovered that she was interested in surgery, and had a natural aptitude for it. After completing a three-year surgical training program in Calcutta, she moved to Britain to continue her studies and gain further qualifications. There, she took her Fellow Royal College of Surgeons (FRCS) examination, which is necessary to become a surgical specialist, intending at that time to practice neurosurgery.</span><br />
<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />Miss Mehta was required to study orthopaedics as well, to pass her examinations. She had the good fortune to work with Mr. Wiles and Mr. Batchelor, two of the foremost orthopaedic surgeons of the time at London teaching hospitals. As a result, she became so intrigued by orthopaedics that she changed her specialty focus.</span><br />
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<span style="color: #134f5c;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Quickly, Dr. Mehta began to appreciate the challenge she had taken on. “It will be tough because you’re a woman,” one of her teachers cautioned. “But you must go for it, because you are good.” It was the 1950s. Miss Mehta, because of her gender, faced enormous difficulties securing interviews for the positions she needed to advance her career. There were few female surgeons practicing in Britain at the time, and the </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">establishment was eager to maintain status quo. She made dozens of applications and received no calls to interview. Eventually, Miss Mehta received an application form that did not ask the formidable “gender” question. She returned it and, due to her impressive credentials, was invited immediately to interview. Although they were surprised to see a woman, it happened that none of the other three applicants for the post showed up for their appointments. She landed the position.</span></span><br />
<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />In 1968, Miss Mehta was the second woman in history to be awarded the prestigious Robert Jones Prize and Gold Medal in Orthopaedics for her work on “A Study of Infantile Scoliosis.” By then, she had already discovered the Rib Vertebral Angle Degree (RVAD), which is the standard and routinely accepted measurement approach employed today to determine whether a scoliotic curve is progressive. She had also come to understand the benefits of early treatment of progressive infantile scoliosis. However, the journals would not publish this work because they felt there was not enough evidence.</span><br />
<span style="color: #134f5c;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />A year later in 1969, still struggling to climb the London surgical ladder due to her gender, Dr. Mehta returned to India. She worked in major teaching hospitals in New Delhi and Calcutta for five years. Her paper on the RVAD was published in the Journal of Bone and Joint Surgery in 1972, while she was practicing in India. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">In 1974, Miss Mehta moved back to England, stepping into a hard-earned and well-deserved position:</span></span><br />
<span style="color: #134f5c;"><span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Senior Lecturer in Clinical Research at the Institute of Orthopaedics, University of London. She also served as an Honorary Consultant in Scoliosis at the Royal National Orthopaedic Hospital during this time, until 1992 (this is the British equivalent to the American “Chief of Surgery” position). <br /><br />Since then, Dr. Mehta has continued her research on non-surgical methods of treatment for infantile, congenital and adolescent idiopathic scoliosis at the Royal National Orthopaedic Hospital. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Although Dr. Mehta has “officially” reached the British obligatory age of retirement, she continues to passionately pursue her life’s work. She continues to see private patients. The paper, “Growth as a corrective force in the early treatment of progressive infantile scoliosis,” published in September 2005 in the British Editorial Society of Bone and Joint Surgery, chronicles years of infantile scoliosis case studies.</span></span><br />
<span style="color: #134f5c; font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><br />Now, Dr. Mehta knows, her challenge is to spread the message about her findings and methods; to educate as many doctors and to help as many children as possible. “It is easy to learn how to apply a plaster jacket,” she says about the casting technique she has perfected. “The trick is to learn to look critically at each child and understand how it can be assisted. The earlier you treat children, the greater the chance of making them straight. But all children are different: their build, tissues, size, and shape vary. Some can be straightened completely and, for some, it may be too late. They are like little drooping flowers. Braces don’t work, and the flower will just flop back to the way it was. It needs to get is own sap, so it can hold itself straight.”</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><span style="color: #134f5c;"><br />“I intend to keep on and on, to see that these messages are delivered,” Miss Mehta insists. And the Infantile Scoliosis Outreach Program is determined to help her achieve that goal.</span><br /></span><span style="background-color: #eff0f4; color: #141c5a; font-family: "Open Sans", Arial, sans-serif; font-size: 12px;">Copyright 2017 Ability Connection Colorado. All rights Reserved</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;"><a href="http://www.abilityconnectioncolorado.org/infantilescoliosis/wp-content/uploads/sites/4/2014/03/Journal-Bone-Joint-article.pdf" target="_blank">Growth as a corrective force in the early treatment of progressive infantile scoliosis</a> </span></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">by Min H. Mehta, M.D., F.R.C.S. Published in The Journal of Bone and Joint Surgery (Br) Sept 2005<br /><br />The story of Mehta casting being brought to US<br /><a href="http://www.abilityconnectioncolorado.org/infantilescoliosis/wp-content/uploads/sites/4/2014/11/Greatest_Gift_Article.pdf" target="_blank">The Greatest Gift - Dec 19 2000</a><br /></span></div>
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com1tag:blogger.com,1999:blog-5667339161815992951.post-37068671491054818942017-07-11T23:27:00.000+10:002017-07-11T23:27:14.004+10:00Spinal Lengthenings ..... and an update <span style="font-family: "trebuchet ms" , sans-serif;">One of the major benefits of Magec rods is the fact that they can be lengthened externally. Each rod has a small motor that is activated magnetically via remote control and will expand the rod to a predetermined length. This means that the rods can lengthened to suit the amount she's growing, as well as the surgeon being able to lengthen one side more than the other to gradually correct the spine.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQDl1XUtZdwju1o7Z2fjTJqvPx6QNc3XGHA77R43iPvVyeZtlytxMzydSGWJ0LJ484sU_zEfPdelV0275bwRD6Q2K7rdP4OcFrsJSmgXpwovvburAXC95bZzMDBbG3YRNpUhnjxCPG10c/s1600/IMG_9760.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1469" data-original-width="1600" height="293" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQDl1XUtZdwju1o7Z2fjTJqvPx6QNc3XGHA77R43iPvVyeZtlytxMzydSGWJ0LJ484sU_zEfPdelV0275bwRD6Q2K7rdP4OcFrsJSmgXpwovvburAXC95bZzMDBbG3YRNpUhnjxCPG10c/s320/IMG_9760.JPG" width="320" /></a></div>
<span style="font-family: "trebuchet ms" , sans-serif;">Evelyne has been having lengthenings every 3 months since the rods were placed in January 2016.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Whilst it is so much better than surgery, it is still painful. The first lengthening was especially painful. Possibly due to the length of time since surgery, possibly due to recent bone work and bone grafts, possibly her spine may have been starting to fuse in places. Yet again we weren't prepared for it to be painful. I had been told by other parents that lengthenings were pain free, but unfortunately this was not our experience. Each time the pain has lessened, and now we give her pain medication before we go.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">Today was Evelyne's 6th lengthening. To our surprise, it turns out today was the last lengthening for this set of rods. As she was so small when her surgeon first inserted the rods, he was only able to fit the smaller length in. We had thought we had a bit more time before the next surgery, but it is now to be scheduled for September. The good news is, the doctor anticipates that he will be able to keep the current screws in place and just replace the rods to the longer version. This will result in a slightly shorter surgery, and hopefully shorter recovery.</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">A few tears from Evie today as she thought of another surgery. Last time we saw the surgeon and he mentioned another surgery soon, I said "I only just got over the last one!" To which Evie replied "I still haven't gotten over it!</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;">I was recently reminded of a previous blog post of mine <a href="https://lifewithbeals.blogspot.com.au/2011/05/dealing-with-disappointment.html" target="_blank">Dealing with disappointment</a>. Whilst some appointments and parts of this journey are disappointing, it is good to remind myself how far she's come since 2011, as well as remind myself that God is indeed in control, and find comfort in that.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmJPNm8NDIkqVt2ZRrdqc9L1M5Nn75XWj7zdf8w39d8MdM4Y8KNbLRcRZgAztkCtpfKYaaG20vvNd-Bb1nIR-66OifwIGfJNCBaxsCSl2oSC-Ar_LqPjkbA5gmxNu0UTjnRvDPL_HEB2Y/s1600/IMG_9758.JPG" imageanchor="1" style="clear: left; float: left; font-family: 'trebuchet ms', sans-serif; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1470" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmJPNm8NDIkqVt2ZRrdqc9L1M5Nn75XWj7zdf8w39d8MdM4Y8KNbLRcRZgAztkCtpfKYaaG20vvNd-Bb1nIR-66OifwIGfJNCBaxsCSl2oSC-Ar_LqPjkbA5gmxNu0UTjnRvDPL_HEB2Y/s320/IMG_9758.JPG" width="293" /></a><span style="font-family: "trebuchet ms" , sans-serif;">A painting Evie made for her doctor today. He affectionately calls her "E.B"</span><br />
<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com0tag:blogger.com,1999:blog-5667339161815992951.post-1948564199550548682017-01-15T22:35:00.000+11:002017-01-15T22:35:47.488+11:00A year on with MAGEC rods - A 'work in progress'<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">It's been a year since Evelyne's surgery and over a year since I last posted. So much has happened last year. Thank you to those who have sent messages asking about her progress. Some of this was written 12 months ago and has been sitting in my drafts.<br /><br /><b>Magec Rods (MAGnetic Expansion Control)</b></span><br />
<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">On January 7th 2016 Evelyne had surgery to implant magec growing rods. We had been awaiting this day for years and the time finally arrived. Surgery was discussed as the next option in <a href="http://lifewithbeals.blogspot.com.au/2011/05/dealing-with-disappointment.html" target="_blank">May 2011</a>, but I sought out a new specialist with new options such as <a href="http://lifewithbeals.blogspot.com.au/2011/08/mehta-casting.html" target="_blank">Mehta casting</a> who encouraged us to wait as long as possible before operating. Waiting the extra 5 years not only gave her body valuable time to grow, but it allowed us to have access to the amazing technology of Magec Rods. They have a small motor in each rod which is activated via an external remote control. This enables the surgeon to lengthen the rods as Evelyne grows without re-operating each time. Dramatically reducing complications associated with frequent surgeries as required with traditional growing rods.</span><br />
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<span style="background-color: white; color: #222222; font-size: 12.8px;"><b>Surgery</b></span></span><br />
<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">Leading up to the surgery we were all nervous wrecks. I had little sleep before and so many doomsday scenarios ran through my head. But Evelyne was so brave going in, and then we had to wait.</span><br />
<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">4.5 hours later her surgeon came out and told us he was finished. He was happy with the final results but reported that it had been "tricky". The kyphosis hump had become quite rigid (a negative side effect of waiting longer) and he had to chip some parts of the bone to get it straighter. Also, once in place, when beginning to stretch the rods, one of the screws started to come out of the vertebrae. A bone graft and a few extra secures later and he was confident in the end result. He informed us that he saw her as a "work in progress", with this surgery being a stepping stone in the process of straightening her spine over the years to come.</span><br />
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<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix9o1w39Vm6TGGVh2cmph3vQW4lB9T86eWwT1bc5HCDOJ-4PnO9MkG-xjBOJXGDzHVZHMEzBw0AMkPbG7gHGRfWdUKYH-gA6sI0RqxhGc-j0L9EiQdHKI1wfJl6kAPvphTm_Mf8DmlVNs/s1600/Evelyne-001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEix9o1w39Vm6TGGVh2cmph3vQW4lB9T86eWwT1bc5HCDOJ-4PnO9MkG-xjBOJXGDzHVZHMEzBw0AMkPbG7gHGRfWdUKYH-gA6sI0RqxhGc-j0L9EiQdHKI1wfJl6kAPvphTm_Mf8DmlVNs/s640/Evelyne-001.jpg" width="640" /></a></span></div>
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<span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white; color: #222222; font-size: 12.8px;"><b>Recovery</b></span></span><br />
<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">I wasn't prepared for the pain she would be in post-surgery. It was so hard to see her lying there and I was completely powerless to help. I probably hadn't prepared her for it either. It will be hard to forget the look in her eyes when she looked at me and said "Mummy, you said 'a bit' of pain". It was a long week. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white; color: #222222; font-size: 12.8px;">We made the most of movies on the ipad to pass the time. </span><span style="background-color: white; color: #222222; font-size: 12.8px;">Another mum I have 'met' via facebook, has written some really helpful things down on preparation for hospital in </span><a href="https://norasjourney-early-onset-congenital-scoliosis.com/2016/09/09/preparing-and-packing-for-your-young-childs-spinal-surgery-what-we-did-and-what-we-would-do-differently-now/" style="font-size: 12.8px;" target="_blank">her blog post</a><span style="background-color: white; color: #222222; font-size: 12.8px;">.</span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: white; color: #222222; font-size: 12.8px;">A major milestone was walking again on day 4. With the main motivation being using a toilet rather than a bed pan. Then on day 8 we left the</span><span style="background-color: white; color: #222222; font-size: 12.8px;"> hospital to spend another week at my parents place before the longer trip home to Bathurst 2 weeks after the operation. </span></span><br />
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<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">Other things we had to put in place post surgery </span></span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">- A bed lower to the ground. </span></span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">- Sleeping in our room for the first few weeks as she needed help to move in the night</span></span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">- Help on the toilet</span></span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">- Pillows. Lots of pillows. In the car, on chairs, in bed.</span></span><br />
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<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;"><b>Longer term recovery</b></span></span><br />
<span style="background-color: white; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">Again, I wasn't prepared for how long it would take Evelyne to recover. I had thought about the short term, but not the long term implications. </span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">She returned to school for the start of the new school year, 3 weeks after surgery. However she was still on strong pain medication, and would fatigue very quickly. Due to the bone graft, she also had added restrictions in the classroom and playground. We put in an application for additional funding at school and were fortunate to be provided with a full time aide Deb (pictured right). Amazing grandparents also spent 2-3 days per week with us for the entire Term 1, so I could continue to work. </span></span><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">By term 2 she was off pain medication, we no longer needed our parents help through the week, but she was still reliant on her aide and her wheelchair for school.</span></span><br />
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<b style="background-color: white; clear: right; color: #222222; font-family: "trebuchet ms" , sans-serif; font-size: 12.8px;">Wrapping up the year</b><br />
<span style="background-color: white; color: #222222; font-size: 12.8px;"><span style="font-family: "trebuchet ms" , sans-serif;">Now this all seems like a distant memory. Although she still has restrictions, occasional pains, discomfort and fatigue. By the end of 2016 Evelyne was able to participate in some of her school athletics carnival, was a star on stage singing and dancing at her school talent quest, and won an end of year academic achievement award. She's pretty special.</span></span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com4tag:blogger.com,1999:blog-5667339161815992951.post-53803816941952929412015-12-15T23:25:00.000+11:002015-12-15T23:30:31.831+11:00Last brace!<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRn3DOPCW61ZuUrWmeS5XQELbWkj1EuLGAf6ks-cBPCStxRwQDZPT920jWtFgaKi5nqbqCMMfQqJJsIyJZxNrjBUhUy8t-hZDRXRk7nj0GnsSnZHHJt12S43IengaL6lMG4GEtfB7xkwY/s1600/brace1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "trebuchet ms" , sans-serif;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRn3DOPCW61ZuUrWmeS5XQELbWkj1EuLGAf6ks-cBPCStxRwQDZPT920jWtFgaKi5nqbqCMMfQqJJsIyJZxNrjBUhUy8t-hZDRXRk7nj0GnsSnZHHJt12S43IengaL6lMG4GEtfB7xkwY/s400/brace1.jpg" width="235" /></span></a><span style="font-family: "trebuchet ms" , sans-serif;">Sometimes it can hard to put a positive spin on things. But often that's the best option.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Evelyne will have her first spinal surgery on the 7th January. It is a major surgery in which they will implant growing rods, attaching them to her spine. I'll write a longer post on this process soon. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">Although we are a bit apprehensive, we know that the time is right. Evie's last x-ray showed that her curves have reached 68 degrees and 49 degrees IN the brace. As a result of this progression she has been experiencing more discomfort and pain, and is finding more tasks and positions difficult. </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">It is time.</span><br />
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="font-family: "trebuchet ms" , sans-serif; font-size: xx-small;"><br /></span>
<span style="font-family: "trebuchet ms" , sans-serif;">We have so much to thank God for.</span></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">- It's been 4 years since I first thought surgery was imminent as I wrote about in <a href="http://lifewithbeals.blogspot.com.au/2011/05/dealing-with-disappointment.html" target="_blank">this post</a></span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">- She is now eligible for Magec rods which I first wrote about <a href="http://lifewithbeals.blogspot.com.au/2011/11/magnetic-growing-rods.html" target="_blank">here</a> in 2011 and hoped would be an option </span><br />
<span style="font-family: "trebuchet ms" , sans-serif;">- This is the last brace! And what 7 year old Taylor Swift fan can resist heart and rose tattoo print</span><br />
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<span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com2tag:blogger.com,1999:blog-5667339161815992951.post-11685363266485303212015-03-03T14:53:00.000+11:002015-03-03T14:54:46.321+11:00New Wheels Arrive!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZ3ZWxUBwEiW2x8FitBLIlY-8yueWWE1o2cMa4z7pGJ4ab3yzM5NoakAliTgLzmUfDRsuoUaqCyI9lIGxpHYW8B8ZZbWfvErEuiVbaiAUSDTgsyetBH1qbRYSVb-ynZjaNiwZpp2fFqU/s1600/DSC_0988.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnZ3ZWxUBwEiW2x8FitBLIlY-8yueWWE1o2cMa4z7pGJ4ab3yzM5NoakAliTgLzmUfDRsuoUaqCyI9lIGxpHYW8B8ZZbWfvErEuiVbaiAUSDTgsyetBH1qbRYSVb-ynZjaNiwZpp2fFqU/s1600/DSC_0988.JPG" height="212" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">Thanks to the amazing generosity of so many people, the 'Wheels for Evie' wheelchair arrived last week. There was a lot of excitement (from all the family).</span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">We are so excited about this chair in so many ways. It is a manual (Zippy) chair base, but has a power attachment (ZX1). As a result we have two chairs in one. This means we can still use the lightweight manual chair and fold it up in the car, but that she can also independently attach it to a power base. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">This amazing chair gives her independence and control over her own mobility. Yet we don't have to have a modified car like with most power wheelchairs. The school has paths and ramps so she can access all areas. The main issue we have to deal with is stopping her from increasing the speed and basic driver training! She wouldn't let me put 'L' plates on, but there have been a few moments I felt they were needed. She's perfecting wheelies and donuts.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">We are still astounded of the generosity from friends, family, church, school, community, anonymous donations, Lions, as well as complete strangers. We are very thankful to God for the amazing supports he has given us.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">First trial - Off- road - Watch out Sam!</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com1tag:blogger.com,1999:blog-5667339161815992951.post-72883353192229630942015-02-14T21:17:00.002+11:002015-02-17T22:12:32.605+11:00Welcome to Holland<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg27y-Nv9dZVwGaTME87Ifx11SAqpc-Gl8XvC3oGvm0rPw_f3eUySV8GTQ5f-htpTMMsrKlY62RIITjlYEj0cqj9ZfcnSGbWfq-WyXDhwRI7XZoxx7eYEzsTLBxdEseCpzgzboEUrf96a4/s1600/DSC_0952.JPG" height="400" width="263" align="right" />
<span style="font-family: 'Trebuchet MS', sans-serif;">c1987 by Emily Perl Kingsley. All rights reserved.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am often asked to describe the experience of raising a child with a disability - to try to help </span><span style="font-family: 'Trebuchet MS', sans-serif;">people who have not shared that unique experience to understand it, to imagine how it would </span><span style="font-family: 'Trebuchet MS', sans-serif;">feel. It's like this…</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You </span><span style="font-family: 'Trebuchet MS', sans-serif;">buy a bunch of guide books and make your wonderful plans. The Coliseum. The </span><span style="font-family: Trebuchet MS, sans-serif;">Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. </span><span style="font-family: 'Trebuchet MS', sans-serif;">It's all very exciting.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">After months of eager anticipation, the day finally arrives. You pack your bags and off you go.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">Several hours later, the plane lands. The stewardess comes in and says, "Welcome to </span><span style="font-family: 'Trebuchet MS', sans-serif;">Holland." </span><span style="font-family: Trebuchet MS, sans-serif;">"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be </span><span style="font-family: 'Trebuchet MS', sans-serif;">in Italy. All my life I've dreamed of going to Italy."</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">But there's been a change in the flight plan. They've landed in Holland and there you must</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">stay. </span><span style="font-family: 'Trebuchet MS', sans-serif;">The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of </span><span style="font-family: 'Trebuchet MS', sans-serif;">pestilence, famine and disease. It's just a different place.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">So you must go out and buy new guide books. And you must learn a whole new language.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">And you will meet a whole new group of people you would never have met.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've </span><span style="font-family: 'Trebuchet MS', sans-serif;">been there for a while and you catch your breath, you look around.... and you begin to notice </span><span style="font-family: 'Trebuchet MS', sans-serif;">that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But everyone you know is busy coming and going from Italy... and they're all bragging about </span><span style="font-family: 'Trebuchet MS', sans-serif;">what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's </span><span style="font-family: 'Trebuchet MS', sans-serif;">where I was supposed to go. That's what I had planned."</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">And the pain of that will never, ever, ever, ever go away... because the loss of that dream is </span><span style="font-family: 'Trebuchet MS', sans-serif;">a very very significant loss.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">But... if you spend your life mourning the fact that you didn't get to Italy, you may never be </span><span style="font-family: 'Trebuchet MS', sans-serif;">free to enjoy the very special, the very lovely things ... about Holland.</span><br />
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com2tag:blogger.com,1999:blog-5667339161815992951.post-12987629802654349892015-01-09T22:54:00.000+11:002015-01-09T22:54:59.488+11:00The time is drawing near<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisfPxO_5OZpSxs_qTOJopH1IERtV_i4d_MH_YQ_zOtH8Rl3cgGdeJbkfYo5_Fhil7SMpgi9BJlh8MQBkVIbVO_RMbmc2uP73JbBY_SvqQBxYI-5fpyh0tuFV1qzPrmrmV3kt94wdXE86k/s1600/DSC_0823-001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisfPxO_5OZpSxs_qTOJopH1IERtV_i4d_MH_YQ_zOtH8Rl3cgGdeJbkfYo5_Fhil7SMpgi9BJlh8MQBkVIbVO_RMbmc2uP73JbBY_SvqQBxYI-5fpyh0tuFV1qzPrmrmV3kt94wdXE86k/s1600/DSC_0823-001.JPG" height="320" width="212" /></a><span style="font-family: Trebuchet MS, sans-serif;">Evelyne had a spinal appointment this week. We have been plodding along since last winter with the current brace, but can tell she is growing more uncomfortable. Evie has had a few issues with redness and pressure on the point of her kyphosis, and occasionally issues with pain, but it's been pretty non-eventful. Every time we see the specialist we get asked "...and how old is she now?"... with the underlying question being "is she old enough for growing rods yet?". This time was no different, however, I think I knew that now Evie is aged 6 we are getting closer. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">They first mentioned surgery when she was 3, and we have persisted in casts and braces for the past 3 years to try to hold off until she is bigger. Basically, the older/bigger they are, the less complications and the more successful the surgery.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The specialist is wanting to try another brace design first, to see if we can hold off slightly longer, however it looks like surgery will be in the near future rather than the distant future. In his words "I'd rather put growing rods in an 8 yr old than a 6 yr old, however we have done well to be putting them in a 6 yr old rather than a 4 yr old". We have a brace review at the end of January to discuss options for a new design which might help, however it is clear surgery is not too far away.<br /></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmlJuw9EAK-0ONzICS1EQYaLjx5HF1bSdGtKGBh8-wdxygoTTLkmUeYuO6WojmwLIVt-5Dc4v8NxvmIyCa-n1wXh-ZtLEAdVArtibXT3IXGCBVOcdYj7d0mRtMeATibgJcR_buXEETyTU/s1600/DSC_0880-001.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmlJuw9EAK-0ONzICS1EQYaLjx5HF1bSdGtKGBh8-wdxygoTTLkmUeYuO6WojmwLIVt-5Dc4v8NxvmIyCa-n1wXh-ZtLEAdVArtibXT3IXGCBVOcdYj7d0mRtMeATibgJcR_buXEETyTU/s1600/DSC_0880-001.JPG" height="211" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Evie, brace free, with her cousin Lydia</td></tr>
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<span style="font-family: Trebuchet MS, sans-serif;">One positive is that it looks like she is eligible for <a href="http://ellipse-tech.com/magec-physicians-spinal-deformities/">Magec </a>rods - magnetic growing rods. This means she will not have to have surgery every 6 months, but the rods can be lengthened via magnets. I wrote about it <a href="http://lifewithbeals.blogspot.com.au/2011/11/magnetic-growing-rods.html">here</a> over 3 years ago when I heard of it, hoping it may be an option for Evie. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I am nervous for what the future holds, but I trust our specialist and his experience, and I am happy with how long we have managed to delay surgery so far.</span>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com5tag:blogger.com,1999:blog-5667339161815992951.post-71237444733157998422014-11-09T21:00:00.000+11:002014-11-09T21:00:02.076+11:00Wheels for Evie<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaAB-1Xjg_ks21s8KxPKJB8FFcrKHfPYBMK6NlS-C5WTsdAM8Aua2A7fneQlGyPkQ7T2CEs_JJqBYjMtP_A31XB62L7rk3mx4PEA3ogZb9-RN_7OnHXyad44-MIOi_7EP_-TwS11tmbD4/s1600/DSC04766-001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaAB-1Xjg_ks21s8KxPKJB8FFcrKHfPYBMK6NlS-C5WTsdAM8Aua2A7fneQlGyPkQ7T2CEs_JJqBYjMtP_A31XB62L7rk3mx4PEA3ogZb9-RN_7OnHXyad44-MIOi_7EP_-TwS11tmbD4/s1600/DSC04766-001.JPG" height="320" width="225" /></a><span style="font-family: Trebuchet MS, sans-serif;">In past blog posts, I have mentioned that Evelyne uses a specialised pram for school and outings. She has joint pain issues, spinal pain, low muscle tone, fatigue and reduced lung capacity due to her scoliosis. In summer months, she becomes quite exhausted from the heat due to the brace. Her school use the pram towards the end of the day, or when they have to go further distances within the school, such as the oval or the library. We use it on holidays, for hospital visits and at the shops. It has been an great help to both reduce her pain and fatigue, and save our backs from carrying her as she gets older.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Recently at school she has been teased about being in a pram, "only babies go in a pram". This is understandable as a pram is inappropriate at her age. As a result we have come to the realisation she will need a wheelchair. This was particularly apparent at her recent sports carnival. Her teacher was kind enough to race with her around the oval, but it was very obvious she had difficulty participating in many of the activities, even though she tried so hard to be involved.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The first wheelchair trial was confronting. She at first refused to get in it, she said it was too 'scary'. Once she agreed to try it, I also got quite emotional seeing her in the chair. It felt like such a big transition. While she was young, we could hide her disability in the pram. Now it is more obvious. After an hour of trialling the wheelchair, she realised using it gave her independence. This was by far the biggest impact. She loved that she could get around herself, without someone else having to push her.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The hospital lent us a chair to trial which gave us the opportunity to see if it would be appropriate for school and home. After a successful trial, we have now started fundraising to purchase her own chair. In Australia we can apply for funding through the government, however, as she can walk, she is seen as a low priority category. This means we could be waiting approximately 2 years for the chair. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">My mum made a huge amount of clothes to sell, and various people donated clothes for a facebook sale site. On top of this, we have been blown away with the generosity of people within our church, school, family and local community, as well as some people we have never met.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://www.facebook.com/WheelsforEvie">Wheels for Evie facebook site</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://www.facebook.com/media/set/?set=a.1469715169960131.1073741830.1463960693868912&type=3">Handmade girls clothes</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://www.facebook.com/media/set/?set=a.1469713443293637.1073741828.1463960693868912&type=3">Girls auction</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://www.facebook.com/media/set/?set=a.1469713759960272.1073741829.1463960693868912&type=3">Boys auction</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="https://www.youcaring.com/manage-fundraiser.aspx?frid=238749">Donation site</a></span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com3tag:blogger.com,1999:blog-5667339161815992951.post-34332217698704639782014-09-17T23:09:00.000+10:002014-09-17T23:09:49.280+10:00A catch up and a birthday<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: 'Trebuchet MS', sans-serif;">It has again been a long time since I've posted. Thank you to those who sent lovely messages asking asking how we were going. In my last post Evelyne was in a cast and we were praying she could last until the 6-week check without developing pressure sores. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">And she did! </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">It was a hard 6 weeks, and we went through various times when we thought we might need to cut the cast off. I always find it difficult to know what to do. As you cannot see what's under the cast, it is up to us to decide if we think she has a pressure sore or not. Which is ultimately based on if we think her pain and discomfort is increasing. </span><br />
<span style="font-family: 'Trebuchet MS', sans-serif;">She got the cast cut off at the follow up appointment, revealing a few surface sores developing, but no need for dressing. It was wonderful news!</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoT0mVy1KfC_RKU_Wi1joqPjaYABjiVP-JCb85uk7OqG9UmeAGpi5mAqvMnSI4iXJFPVb7qzz20wr4Lsm9_bTrJdwAl0vDC6ZcGw6O4qxYDQOd1K4HCUQ9SHM5c4xLP-FdVuvV3HunNNY/s1600/2014-06-12.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoT0mVy1KfC_RKU_Wi1joqPjaYABjiVP-JCb85uk7OqG9UmeAGpi5mAqvMnSI4iXJFPVb7qzz20wr4Lsm9_bTrJdwAl0vDC6ZcGw6O4qxYDQOd1K4HCUQ9SHM5c4xLP-FdVuvV3HunNNY/s1600/2014-06-12.jpg" height="179" width="640" /></a><span style="font-family: Trebuchet MS, sans-serif;"><br /></span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">The next day she was cast for a new brace and then fit the day after that. The quick turn around this time was great, with her new brace x-ray measuring the same as her cast x-ray at 53 degrees for the lumbar curve in the brace.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Note that her new brace is plain purple this time, as she is apparently now too grown up for butterflies and bunny rabbits.</span><br />
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<span style="color: #23abc4; font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;">MY BIG 6 YEAR OLD</span></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">This week my 'grown up' girl celebrated her 6th birthday. I've included a couple of photos from her 'Frozen' themed party with school friends.</span><br />
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com3tag:blogger.com,1999:blog-5667339161815992951.post-53529101651873217342014-05-11T21:16:00.000+10:002014-05-11T23:00:04.795+10:00Another winter, another cast<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglkPPTWMnxV5t8Wt_AtWwHQI9y-VFm-uwf7xRUr-3MWE_bhentK0aT-20Nw-3nJqz0z3CgmXTBVbjVMPtj4b3n8wkuB0OA3FG_PnTRcNHPJB4jGgHiOwBaGDq93IRC35p5-N0yEG5FD_Q/s1600/20140502_082412.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglkPPTWMnxV5t8Wt_AtWwHQI9y-VFm-uwf7xRUr-3MWE_bhentK0aT-20Nw-3nJqz0z3CgmXTBVbjVMPtj4b3n8wkuB0OA3FG_PnTRcNHPJB4jGgHiOwBaGDq93IRC35p5-N0yEG5FD_Q/s1600/20140502_082412.jpg" height="320" width="240" /></a></div>
<span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; color: #222222;">Last Friday Evelyne had another spinal cast applied in Sydney.</span><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">It is always tough leading up to casting, emotionally preparing for pain, discomfort and sleepless nights. I am usually a mess the week before. And this time was no different. But as usual Evie was relatively calm and although she admitted she was not looking forward to the cast "because it hurts more, and you cant take it off!", she was her normal happy, positive self before (as you can see from the photo).</span></span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br style="background-color: white; color: #222222;" /><span style="background-color: white;"><span style="color: #222222;">She recovered after the general anesthetic much better than her last cast, and was able to stand and walk quicker also. However she still needed pain killers and was in alot of pain if they wore off. She also slept very well the first few days and managed the 3 hr car trip home to Bathurst the next day with only one stop. </span></span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg92RT43JgAkQux9HlJXAM-24dHpd3W8CPjH0KuehYUFmlCRsURw90y7ZZ6EqdmvaMqJc-LFtoVGPQn8QAQlg3P-P3ZELv2oTXjy82WzNZXEoJRPosWbr2Y-W-vplaWROfwcruYI6izbC8/s1600/DSC_0032.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg92RT43JgAkQux9HlJXAM-24dHpd3W8CPjH0KuehYUFmlCRsURw90y7ZZ6EqdmvaMqJc-LFtoVGPQn8QAQlg3P-P3ZELv2oTXjy82WzNZXEoJRPosWbr2Y-W-vplaWROfwcruYI6izbC8/s1600/DSC_0032.JPG" height="400" width="236" /></a><span style="font-family: Trebuchet MS, sans-serif;"><span style="background-color: white; color: #222222;">We again decorated her cast in her choice of print, and her doll Milly (now renamed Annabelle) again shared the same design.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">One week on she is still struggling to sit for periods of time and prefers to stand, kneel, use a bean bag or lie on her tummy. And at times she still needs pain medication. Evelyne attempted school for a few hours each day Tues-Fri, with the help of her aide, and although the first few days went well she only lasted half an hour Friday before her back was hurting too much and she needed to come home.</span><br style="background-color: white; color: #222222;" /><br style="background-color: white; color: #222222;" /><span style="background-color: white; color: #222222;">I'm not sure what the next few weeks will hold. It's hard not thinking that she may already have a pressure sore, but maybe she is still just adjusting to the change in her spine position. I recall it taking about a week to recover last year also. We are also awaiting the x-ray results to see what angle the cast has achieved. In the meantime we continue to pray for her to be more comfortable and that this cast will last longer than the others.</span></span><br />
<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com6tag:blogger.com,1999:blog-5667339161815992951.post-90488710717205374272014-03-10T13:16:00.000+11:002014-03-10T13:19:52.981+11:00Starting school<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXyZqFgChUiAbYO4Ck1O6lwrpYnXDY4sZ6JpxF-S90T2eYOrxbQQdExphVQFrGUT4kI0DeiZn1nSTw4bwOHRh_CIPchqOBpye9DzK6bSKyv8DKXa0FFzjP9F3UtJrfL51zMtHAMIIHk-w/s1600/1229826_10152569877453508_1684780409_n+(1).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXyZqFgChUiAbYO4Ck1O6lwrpYnXDY4sZ6JpxF-S90T2eYOrxbQQdExphVQFrGUT4kI0DeiZn1nSTw4bwOHRh_CIPchqOBpye9DzK6bSKyv8DKXa0FFzjP9F3UtJrfL51zMtHAMIIHk-w/s1600/1229826_10152569877453508_1684780409_n+(1).jpg" height="400" width="220" /></a><span style="font-family: 'Trebuchet MS', sans-serif;">Evelyne started school last month and she is loving it! She is attending our local public school (same school as Samuel) which is only a short walk from our house. Incidently it is also the same school I started Kindergarten in almost 20 yrs ago. She is in a standard Kindergarten class with a part-time aide and some extra equipment to help her.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">This includes:</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- Her pram/buggy, to get to school, and to leave at school for when the kids walk longer distances or she gets tired</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- A cushion for her chair as she was experiencing pain on her kyphosis when sitting</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- A peanut cushion for sitting on the floor, to avoid </span><br />
<span style="font-family: Trebuchet MS, sans-serif;">W-sitting</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- A splint for her wrist and thumb and a pencil grip</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">- A beanbag for floor sitting when tired</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">We are also in the process of organising a step and rails for the toilet (she is in a classroom with it's own toilet). This will be mainly needed for when she is fitted with another cast in April.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Her main issue, as we expected has been fatigue. As expected she has friends, loves classwork, loves her teacher, and is very independent. However she is exhausted by the afternoons. Although all new school kids experience this, with the added difficulty of her lung restriction, she was struggling. The first few weeks were especially difficult with the heat. The teacher and aide have been using her pram for longer distances, but have found they were even needing it for the short distances also. As a result the school have applied for more funding so her aide will be available more hours. This again, will be especially helpful come April, when she will need more assistance in the cast.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrOxYpZd4LC3azRvog5IsRhejX0KoEMmydxuphdGQT1esNuND33Bphlx5djoV59z-rhIu5D0aC91vxqX9JNiL8hl3owkYr0y_EHlgGQIFjZZ8RGDpHvMEMxaIiYaSOAxB7dWBGh6ZVOHM/s1600/DSC_0001-001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrOxYpZd4LC3azRvog5IsRhejX0KoEMmydxuphdGQT1esNuND33Bphlx5djoV59z-rhIu5D0aC91vxqX9JNiL8hl3owkYr0y_EHlgGQIFjZZ8RGDpHvMEMxaIiYaSOAxB7dWBGh6ZVOHM/s1600/DSC_0001-001.JPG" height="320" width="242" /></a><span style="font-family: Trebuchet MS, sans-serif;"></span><br />
<span style="font-family: Trebuchet MS, sans-serif;">I was a mix of emotions leading up to her beginning </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">school. Some excitement, some nerves and worry. It was hard to hand her over to others for so many hours in the week. However I am very happy that the school have been so helpful and I am confident that they are looking after her.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Our local paper did an article in her first week of school. It was a great article you can read the online version </span><a href="http://www.westernadvocate.com.au/story/2078896/new-challenge-for-a-courageous-little-girl/?cs=114" style="font-family: 'Trebuchet MS', sans-serif;">here</a><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /></span>Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com3tag:blogger.com,1999:blog-5667339161815992951.post-12819248539765987632014-02-01T22:09:00.000+11:002014-03-10T13:17:06.385+11:00The 'skinny' gene<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEileJHzybWx-arXRv0sHmeUpgEewMVzbZSPLnOBxmVBDgwu-jRoTbzoeRghTHENrt2qnF1-EMHh1ZHhKb3i6rGRigeo3ZPSxlJ9ykOQD-CgaiM04wBA2W6Jkq-mzieOwnDmeVcs8xT1lw8/s1600/DSC_0103.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEileJHzybWx-arXRv0sHmeUpgEewMVzbZSPLnOBxmVBDgwu-jRoTbzoeRghTHENrt2qnF1-EMHh1ZHhKb3i6rGRigeo3ZPSxlJ9ykOQD-CgaiM04wBA2W6Jkq-mzieOwnDmeVcs8xT1lw8/s1600/DSC_0103.JPG" height="640" width="236" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All ready for a recent ballet concert</td></tr>
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<span style="font-family: 'Trebuchet MS', sans-serif;">One of the known features of Beals Syndrome is long slender limbs and fingers. From what I've learnt from other Beals families, this is one of the most noticeable outward factors of Beals and many speak of comments made about long fingers, arms, toes etc. It appears to be linked to the genetic mutations in fibrillin-2 (Beals) and fibrillin-1 (Marfan) as both conditions display factors of increased height, armspan can be greater than their height, and slender fingers (arachnodactyly). Beals Syndrome was previously known as Congenital Contractural Arachnodactyly.</span><span style="font-family: Trebuchet MS, sans-serif;"><br /><br />From birth we noticed Evelyne's long feet and long fingers. Even before we knew she had any sort of genetic condition we were aware of their unique shape. One nurse commented at birth "look out Thorpe" (the Aussie swimmer) while we had numerous comments that she "would be a piano player". As she grew we could see more and more, not just long slender fingers, but her overall long, slender shape. <br /><br />Until recently it has not been a major concern to us as we knew it was a common aspect of Beals. However a trip to the nutritionist, made us realise we need to be striving to put more weight on her. Due to her scoliosis, and her future need for surgery, it is important to increase her body fat. At present she is so skinny, and due to her kyphoscoliosis, her spine is very prominent. This means she gets frequent pressure issues, but it may mean more complications in surgery. The surgery involves rods and bolts to attach, and basically, they just need more flesh to work with to cover over all the hardware.<br /><br />She does not eat huge volumes of food, possibly due the restriction on her stomach from her brace and scoliosis. So our first attempt involves adding calories without adding much volume. </span><span style="font-family: 'Trebuchet MS', sans-serif;">Her new diet is everything I would normally associate with a poor diet. But I've had to change my mindset.</span><span style="font-family: 'Trebuchet MS', sans-serif;"> </span><span style="font-family: 'Trebuchet MS', sans-serif;">As the nutritionist said, for the next few years, sugar and fat are our friends. For every meal I have to add a high fat or sugar content to Evelyne's serve. I either add oil, butter, margarine, cream, sour cream etc. I know of other kids with Beals Syndrome who have not put weight on by diet alone. They have ended up with PEG tube feeds in an attempt for weight gain. This is a good motivation to work hard on her new 'diet'.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;"><br /> </span> Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com3tag:blogger.com,1999:blog-5667339161815992951.post-57065066101490013122013-08-31T14:08:00.000+10:002014-03-10T13:17:49.368+11:00Busyness and daily struggles<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1hTydvywIqpbQAtEHjatnwdgNkKoNL6KaFfxollPHO4HmCj7sG6ybYSEGHgECSc4G0OjCZ20zFcp0Ks02WQbwJRclZJxK_Q6jlkCm4DvfDYGr-pbYliPd_0fJRFv_CK42KywFFZ1_w_Q/s1600/DSC_1166-001.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1hTydvywIqpbQAtEHjatnwdgNkKoNL6KaFfxollPHO4HmCj7sG6ybYSEGHgECSc4G0OjCZ20zFcp0Ks02WQbwJRclZJxK_Q6jlkCm4DvfDYGr-pbYliPd_0fJRFv_CK42KywFFZ1_w_Q/s400/DSC_1166-001.JPG" height="237" width="400" /></a><span style="font-family: Trebuchet MS, sans-serif;">I'm sure most parents will agree that life with kids is busy. But those of us with kids with special needs will know that the busyness triples at times. I've realised it has been over 2 months since I last posted and I was trying to think about what had happened in the past 2 months. I feel like its been a whirlwind of work, housework, church, meetings, kids sport, ballet. But then added on top is OT appointments (for Sam as well as Evelyne), physio (for me as we'll as Evelyne), GP (for all 3 of us), paediatrician, rehab specialist, orthopaedic specialist, spinal surgeon, dietitian, orthotist, yearly visits to the cardiologist, ophthalmologist, and I may have missed one or two.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I'm not sure how to avoid this busyness. <span style="-webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); -webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875);"> Sometimes I don't know how long I can continue the relentless appointments and treatment. </span>I have wondered at times if Evelyne really 'needs' to see all those people. Or if I should work on one thing at a time. But unfortunately the nature of Beals is it affects so many different parts of the body. Connective tissue is everywhere! And appointments with spinal specialists and orthotists are very important to keep on top of when dealing with a worsening scoliosis. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">As well as busyness in our daily scedule, there is also the tendency to feel overloaded emotionally. I tend to go through stages where i feel very overwhelmed and out of control. I hate watching the daily struggles that Evelyne goes through. When she is in pain while her body adjusts to a new brace or cast, when she struggles with sickness and chest infections and we have to force her to use the nebuliser, or simple things like her struggle to run or do ballet steps like her friends.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have come to realise the importance of friends and family who understand. The times I can cry on a friends shoulder, have a cuppa and some chocolate and a debrief. It is so important to have these people in my life for support when I do feel down and out. To have their emotional support as well as practical support when I need it. I am very thankful to God for the family and friends he has given me who are such an encouragement in the tougher times. </span><br />
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com6tag:blogger.com,1999:blog-5667339161815992951.post-33710880823961751042013-06-03T14:28:00.000+10:002013-06-03T14:28:41.146+10:00Another short-lived cast<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1loiJC2DYzbv6T3iPaAxCAUO9OPdGpo99y2aZUtR1DTl7cHdhWM_lpTh4pbtSPXfYZ_-IFUhxpngwNUwlgGWJz3EZyOdr0EE4bSQsPvOviy6P3oJlpE7kN3Vi2-vOzn-GXxWzJ0aGftY/s1600/2013-05-032.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1loiJC2DYzbv6T3iPaAxCAUO9OPdGpo99y2aZUtR1DTl7cHdhWM_lpTh4pbtSPXfYZ_-IFUhxpngwNUwlgGWJz3EZyOdr0EE4bSQsPvOviy6P3oJlpE7kN3Vi2-vOzn-GXxWzJ0aGftY/s640/2013-05-032.jpg" width="281" /></a><span style="font-family: Trebuchet MS, sans-serif;">On Friday we had Evelyne's cast cut off. It had been on for 5 weeks this time, so I was happy that it was a longer stint than the last one. We had three good weeks after she got used to the new cast. She was happy, independent and enjoyed playing at home and preschool. However over the last week she started complaining of pain. In particular she found sitting in chairs and in her carseat difficult, and she started waking in pain through the night also.</span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">As a result we had the cast cut off locally. It was a very hard decision, as we really wanted this one to last longer. The ordeal of travel, general anaesthetics and xrays mean that the longer a cast can last, the better. However the change in her mood was demonstrating that something was wrong. We found that again there was a pressure sore on the point of her kyphosis. In the same spot as the last one. This sore was slightly wider, but thankfully not as deep as the previous sore. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It is disappointing, but I am glad that we made the right decision. Leaving it longer would have meant a deeper sore, and a longer time for it to heal without any sort of support. On the positive side, Evelyne is enjoying her 'freedom' and she can now put on her shoes and socks by herself. The sore is healing well and we may even be able to put her brace back on her this week. Plus t</span><span style="font-family: 'Trebuchet MS', sans-serif;">he first bath in 5 weeks was exciting!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">P.S. Milly had her 'cast' cut off too. Evie talked her through the procedure and she was very brave.</span><br />
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com4tag:blogger.com,1999:blog-5667339161815992951.post-29403501110723938692013-05-01T23:23:00.000+10:002013-05-02T07:00:31.305+10:00A new spinal cast - with a 'twist'<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN425zKqiBsV2L5yHPp182HH9VYLn0WlABbCNUmRDxg6xSknIQSRdTv0EGpf-nDVPaldjeYykeUEwNevmJ0HeWzqKam8yQC4IV80hrbOahrVFdkavtUMLqbwh85J17AdtWljisK6LncSM/s1600/DSC_0586.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN425zKqiBsV2L5yHPp182HH9VYLn0WlABbCNUmRDxg6xSknIQSRdTv0EGpf-nDVPaldjeYykeUEwNevmJ0HeWzqKam8yQC4IV80hrbOahrVFdkavtUMLqbwh85J17AdtWljisK6LncSM/s320/DSC_0586.JPG" width="212" /></a><span style="font-family: Trebuchet MS, sans-serif;">On Friday Evelyne had another spinal cast applied. I have been dreading it since our <a href="http://lifewithbeals.blogspot.com.au/2012/09/cast-update.html">last experience</a> ended with us having to remove it after 3 weeks due to pressure sores.</span><br />
<span style="font-family: Trebuchet MS, sans-serif;">After discussions with her doctor, Angus Gray, she had the cast applied over a knit-rite shirt that I sourced from the US. He also casted her under the arms as her curve is quite low and she was very restricted in the shoulders last time. I am feeling positive about the impacts of these changes.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNWRE8fXqC6bxav6D8YzhjXgQcBAGrTStRNHv3_A5FStciuoN9RkNUN8iYraK9YqaDHxtCa2PvVPnkHWPkdEKpnHfsDLbjqwUJ47DIy9bj0TIXh45WoQzoJCfiHsm4jRDK8cIfbx3SZE/s1600/DSC_0600.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: Trebuchet MS, sans-serif;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDNWRE8fXqC6bxav6D8YzhjXgQcBAGrTStRNHv3_A5FStciuoN9RkNUN8iYraK9YqaDHxtCa2PvVPnkHWPkdEKpnHfsDLbjqwUJ47DIy9bj0TIXh45WoQzoJCfiHsm4jRDK8cIfbx3SZE/s320/DSC_0600.JPG" width="212" /></span></a><span style="font-family: Trebuchet MS, sans-serif;">The last few days have been hard. Although the procedure went well and Evelyne recovered from the general anaesthetic quicker than last time, she has clearly been in discomfort and pain. She was on pain medication for the first few days and I found it hard to see her struggling. Evie is so tough and does not complain, but she has struggled to do simple things like take herself to the toilet. It is amazing to think of the changes her body is coping with. They have pushed the scoliosis angle from over 60 degrees to 39 degrees. And she has grown almost 3cm in one day! You can see in the first picture she is trying to put on a brave face.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">The last 2 days Evelyne has become happier and as she says "I am getting used to my cast". She went to preschool for 2 hours yesterday and ballet this morning. Although night-times are still hard it is encouraging to see her doing so well. I am now praying she stays free of pressure sores. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I made her a doll to take with her into the theatre and put a matching cast on it. Thankfully it was a hit! I bought the printed duct tape online last year and am now very glad that I did. Milly hasn't left her side and now Evelyne has the pink polka dots to match.</span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com5tag:blogger.com,1999:blog-5667339161815992951.post-60573436423740988352013-04-08T11:53:00.000+10:002013-04-08T11:54:05.252+10:00Sleep Studies<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5KU9CxWYFdtymE3el2Peh9d3t1GY9DHedxc4Porz52IMteDxm7P51Pf38Q9soK8x8ZnDwGmwVynhVqFPmabupvsTzJ7c-p1owg7bs1sfyQqZgT2NCKgOd4AmkOYIhRo9Lt-nBu75FtSM/s1600/DSC_0005.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5KU9CxWYFdtymE3el2Peh9d3t1GY9DHedxc4Porz52IMteDxm7P51Pf38Q9soK8x8ZnDwGmwVynhVqFPmabupvsTzJ7c-p1owg7bs1sfyQqZgT2NCKgOd4AmkOYIhRo9Lt-nBu75FtSM/s320/DSC_0005.jpg" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">Late last year Evelyne had a sleep study done as a follow on from her Restrictive Lung Disease diagnosis. </span><span style="font-family: 'Trebuchet MS', sans-serif;">They wanted to check that she was getting enough oxygen through the night.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-sWBsUvftkHsy3qqOEWcsrGeOpadJsgP2Tz_Uy9ie-UZgDSNxogv0VyaevCFueuqbL22k-jmFSejzeVsFUVMtp4b0IrDsVeEMklRL77OM6Glia8TambTqShYYmY5cBhkR3e785HBgIS0/s1600/DSC_0012-002.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-sWBsUvftkHsy3qqOEWcsrGeOpadJsgP2Tz_Uy9ie-UZgDSNxogv0VyaevCFueuqbL22k-jmFSejzeVsFUVMtp4b0IrDsVeEMklRL77OM6Glia8TambTqShYYmY5cBhkR3e785HBgIS0/s320/DSC_0012-002.jpg" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">After we checked in at Westmead, we got our beds set up and PJs on. Then the Sleep Technician came and put a series of wires and electrodes over Evelynes Head, face, and chest. They attached them with a paste much like toothpaste which was interesting to get out of her hair the next day! We then had to put the brace back on over the top. This was probably the trickiest part, as it was difficut to make sure the electrodes were not digging in too much underneath.</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNyBRxbHvkbz9hjA96JCgdjY8ZfBepdiQtgRjZiJWaqoizBWJMsqt_n48JDvUZ171CuWscDtOMEzlW_UudFtRzK3QUvugtP5SFHbJwvEXE4pq12_Bbw8FybdWs7eco7ro8fH5RfeXMfG0/s1600/DSC_0018.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNyBRxbHvkbz9hjA96JCgdjY8ZfBepdiQtgRjZiJWaqoizBWJMsqt_n48JDvUZ171CuWscDtOMEzlW_UudFtRzK3QUvugtP5SFHbJwvEXE4pq12_Bbw8FybdWs7eco7ro8fH5RfeXMfG0/s320/DSC_0018.jpg" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">All up it was a relatively positive event. Much better than what I expected, and Evie coped much better than I expected too. There were a few hours in the early morning when she woke and was upset, and the Sleep Tech's had to come in a few times to check on her, so we were a bit sleep deprived the next day. </span><br />
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<span style="font-family: 'Trebuchet MS', sans-serif;">We recently saw the doctor for the follow up. He was very pleased with the results. He had no concerns in regards to her oxygen levels at night. A great outcome!</span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com2tag:blogger.com,1999:blog-5667339161815992951.post-51504632527569642392013-02-20T13:02:00.001+11:002014-03-10T13:18:32.665+11:00She can do anything!<span style="font-family: Trebuchet MS, sans-serif;">I have previously been told that Evelyne may not be able to ride a 'normal' bike. This was thought due to her low muscle tone in her legs as well as her lack of core strength due to the scoliosis and brace. So when we went for walks we pushed Evelyne in a younger child's trike which had a parent controlled handle to push it. I wasn't too concerned as I knew of a company <a href="http://www.tadnsw.org.au/FreedomWheels/index.php">TAD</a>, that helps modify bikes for older kids. I just assumed we would draw on their services one day. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUtVUVrbqKf-mZkcvdZ5n8LbbtUhpLvkit5F-zYVsNb-cJN0YdGyfzoqbZYW-cZVq6_VZFGeqyRSVoZCuZNGTfpZUimvXGOqkuTDzyr3IyLmnoDbTRLeJ9NVAmB4s6uMOvqlwMZzwY2A/s1600/IMG_1847.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUtVUVrbqKf-mZkcvdZ5n8LbbtUhpLvkit5F-zYVsNb-cJN0YdGyfzoqbZYW-cZVq6_VZFGeqyRSVoZCuZNGTfpZUimvXGOqkuTDzyr3IyLmnoDbTRLeJ9NVAmB4s6uMOvqlwMZzwY2A/s320/IMG_1847.JPG" height="244" width="320" /></a><span style="font-family: Trebuchet MS, sans-serif;">Recently, a friend offered a bike for sale with training wheels and a parent handle. I thought, that's perfect! It's a standard sized bike, but we could still push her along.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">We took her for her first ride, expecting to be pushing her along, and you can see the results from the video clip below. I'm not sure who was more excited, Evelyne or me.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Another lesson to never underestimate my girl!</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Song : Jay Laga'aia - Bikeling - (used with permission)</span><br />
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Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com3tag:blogger.com,1999:blog-5667339161815992951.post-4987608219756428452013-01-20T16:34:00.000+11:002013-01-20T16:34:04.913+11:00Update<span style="font-family: Trebuchet MS, sans-serif;">It has been a long time since I've written a post. I'm sure most people agree that the end of the year, Christmas and New Year is a crazy time! We had Christmas with family in Sydney, went camping for a couple of days with friends, drove 2500km to Adelaide for a family wedding, and have spent the last week involved in a Kids holiday club through church.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Evelyne was fitted with a brace in November. The x-ray showed that the angle is still over 50 degrees, so it looks like the doctors will cast again, but ran out of time to get it done before Christmas. Fortunately this meant Evelyne has been able to enjoy swimming, waterfights and baths over this hot summer.</span><br />
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<br />Louisehttp://www.blogger.com/profile/06074191041723684504noreply@blogger.com2