tag:blogger.com,1999:blog-55620200825048000492024-02-07T11:08:55.723+08:00Love And A Leap of FaithAn extraordinary girl living with Trisomy 18Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.comBlogger656125tag:blogger.com,1999:blog-5562020082504800049.post-15416939353294095302023-09-20T17:35:00.006+08:002023-09-20T17:42:23.875+08:00Growth Plateaus<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhP_KX2d88PtThmRJ5qXWByJ4p7okNuCUN17CTY847xzl4fyO2APiqIyQqwZsS8_Zj6PYjMuAqoF48j1sSF6w5Wz6joxxwwvAUv_e3AfpjProxEpFnBziWpSAue53lyIL3ZlfsIZJ7MuLX9qlUaAH1p8ZuJMzlhiOTtQABEB1E8sMvEyH8R0yEH8DCM3jnm" style="margin-left: 1em; margin-right: 1em;"><img alt="" data-original-height="2807" data-original-width="3564" height="315" src="https://blogger.googleusercontent.com/img/a/AVvXsEhP_KX2d88PtThmRJ5qXWByJ4p7okNuCUN17CTY847xzl4fyO2APiqIyQqwZsS8_Zj6PYjMuAqoF48j1sSF6w5Wz6joxxwwvAUv_e3AfpjProxEpFnBziWpSAue53lyIL3ZlfsIZJ7MuLX9qlUaAH1p8ZuJMzlhiOTtQABEB1E8sMvEyH8R0yEH8DCM3jnm=w400-h315" width="400" /></a></div><br /><span style="font-size: medium;">Miss Vera, who has been growing steadily over the years, surprised us in June this year with a slight drop in her weight. So it's a sign that we're not feeding enough as she's 15 now and nutritional needs have increased. We've gained back the weight loss to neutral and hope to continue giving her a boost. Check in again at her 16th birthday for any growth progress :) </span><p></p>Mayhttp://www.blogger.com/profile/18382515451641056003noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-73410039877192439632019-11-01T12:00:00.000+08:002019-11-01T15:55:02.140+08:00When Do I Let Go - New Song Out Now<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcKUlxVWcH7PLZ6h8SPUfZ-GwLWkk0pMHkBkH-EUO4SSl8U-Y4KxTeswmIkYYf6aohCpNdwxgGuhJqyjT23-iW0VUaMpOPe7s0UDlw88ISfBUYtV8vUHEQa-X_8ohDtpqBfH7YBa5rWw/s1600/quote+watch+now.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="530" data-original-width="532" height="318" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjcKUlxVWcH7PLZ6h8SPUfZ-GwLWkk0pMHkBkH-EUO4SSl8U-Y4KxTeswmIkYYf6aohCpNdwxgGuhJqyjT23-iW0VUaMpOPe7s0UDlw88ISfBUYtV8vUHEQa-X_8ohDtpqBfH7YBa5rWw/s320/quote+watch+now.png" width="320" /></a></div>
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After the launch of <a href="https://mylittlevera.blogspot.com/2018/09/love-is-not-rare-original-song-out-now.html" target="_blank">Love Is Not Rare in 2018</a>, I wanted to carry on sharing the many songs Vera has inspired.<br />
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'When Do I Let Go' is a song I wrote after our difficult episode with Vera in 2016. <a href="https://mylittlevera.blogspot.com/2016/04/the-house-that-supports-us.html" target="_blank">We stayed at the Ronald McDonald House then</a>. At the time, it was <a href="https://mylittlevera.blogspot.com/2016/04/difficult-decisions.html" target="_blank">a dilemma deciding what we should do</a> as parents. <i>Do we hang on? Do we let go? Do we pray or say goodbye? </i><br />
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A blessed opportunity emerged earlier this year to collaborate with <a href="http://rmhc.org.sg/" target="_blank">Ronald McDonald House Charities Singapore</a> who is celebrating their 30th year. They heard the song and were keen on a music video about parents' experience with their sick children in hospital.<br />
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After six months in the oven, here it is - <a href="https://youtu.be/41lNLTxaCVE" target="_blank">'When Do I Let Go' Music Video</a><br />
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I cannot thank Patrick Chng enough for arranging and producing the song, without which this MV would not have been possible. Also to the good folks of Back Button Media once again, for the meticulous planning and sensitive storytelling.<br />
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Ever thankful to RMHC Singapore for this opportunity to collaborate and bring the experience of real parent beneficiaries to life through song. The support from Vera's hospital was also amazing. So much work behind the scenes in planning it all.<br />
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Do visit <a href="http://rmhc.org.sg/" target="_blank">RMHC Singapore</a> to learn more about their meaningful work, dedicated volunteers or make a donation.<br />
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Alone we can be good, but together we can achieve so much more.<br />
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XXX<br />
Yin MayYin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com1tag:blogger.com,1999:blog-5562020082504800049.post-82499521339539222192018-11-10T20:58:00.002+08:002018-11-10T21:12:52.306+08:00The Trisomy 18 Tide Turns<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMKaKVFcmK9Cii9u70MzliS5pOfo1YhAS7B4-7iNF4xDrYD6M9-NrtvUiXguRPcRiF1UxjMBEl0UTKSscHLHI0-CzN7XKWDyswt8SAHVZXJm9xeKN7Ial3ZGVI_SjIpA6hjTd7zm0kPGg/s1600/20181110_203937.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMKaKVFcmK9Cii9u70MzliS5pOfo1YhAS7B4-7iNF4xDrYD6M9-NrtvUiXguRPcRiF1UxjMBEl0UTKSscHLHI0-CzN7XKWDyswt8SAHVZXJm9xeKN7Ial3ZGVI_SjIpA6hjTd7zm0kPGg/s400/20181110_203937.jpg" width="400" /></a></div>
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10 years ago, parents I know whose infant had Trisomy 18 had to bring their case to a hospital ethics board to push for surgery for their child. </div>
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Today, not only are children with congenital conditions covered by the country's insurance plan for large hospital bills, they announced this in the news: </div>
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<a href="https://www.straitstimes.com/singapore/health/medishield-life-coverage-extended-to-three-new-areas">https://www.straitstimes.com/singapore/health/medishield-life-coverage-extended-to-three-new-areas</a></div>
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Excerpt:</div>
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"The other area now covered by MediShield Life is surgical operation for those suffering from two rare, life threatening conditions – Trisomy 18 (where the infant has an extra chromosome) and alobar holoprosencephaly (where the brain fails to divide properly into right and left hemispheres).</div>
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MOH said surgical interventions for these conditions were previously excluded from MediShield Life coverage as treatment was not effective, but more recent international studies have shown that surgical interventions can now improve the quality of life and survival of patients."</div>
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For certain, Vera's early g-tube surgery, fundoplication, cleft surgery, adenoid surgery, and biPAP suppport have tremendously improved her quality of life and given us 10 years of her unbridled joy and company.</div>
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The work of the warrior parents I know advocating over the years, working to get such studies published have not gone unnoticed. </div>
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Dear Vera and Leona, the tide turned during your lifetime. It turned during your lifetime. </div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com2tag:blogger.com,1999:blog-5562020082504800049.post-27340171996177266432018-09-26T15:57:00.001+08:002019-05-21T09:35:44.565+08:00A Little Arm Tapping<div dir="ltr">
Day 21 today. When I came she was awake. I sang her a familiar song, and towards the end, she started tapping her good arm in response, then drifted back to sleep. We learn to look out for these brief precious signs from our little non-verbal girl.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyRMgjqxxnccPm4x6WELkpPgf_dARH1s_Wgm6rVFGjMIZPSfmVy53bEdSwfgzlTcXtRx7dQzVoifkfmP7wyz0vVr8PR4pBmWmIivhz-RGz7Qevv8j9IbIKWgymOV4Gp8ziGnSzMjLnww4/s1600/20180926_132051.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyRMgjqxxnccPm4x6WELkpPgf_dARH1s_Wgm6rVFGjMIZPSfmVy53bEdSwfgzlTcXtRx7dQzVoifkfmP7wyz0vVr8PR4pBmWmIivhz-RGz7Qevv8j9IbIKWgymOV4Gp8ziGnSzMjLnww4/s400/20180926_132051.jpg" width="400" /> </a> </div>
Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-90309417003597257612018-09-17T13:16:00.001+08:002018-09-17T13:16:36.518+08:00Day 12 At The Hospital<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIb4caSKXizdqY9rUUSgelqxY9Q5wXo_CcaeimCxvqTBXau-TP1vwcqA2HQaKwH83CiyKqUhhrBt3Vx76vSklM9sSIMlDWXRvkCRND3649lh72QKmw2i5nFmTgWCMzxrxHv-wc-X77p2E/s1600/20180909_123336.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1314" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIb4caSKXizdqY9rUUSgelqxY9Q5wXo_CcaeimCxvqTBXau-TP1vwcqA2HQaKwH83CiyKqUhhrBt3Vx76vSklM9sSIMlDWXRvkCRND3649lh72QKmw2i5nFmTgWCMzxrxHv-wc-X77p2E/s400/20180909_123336.jpg" width="327" /></a></div>
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We're on Day 12 at the hospital.<br />
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Medically fragile kids like Vera can't cough and spit out their secretions as well as us and have to be suctioned almost every 3 hourly to have it removed. The session can take a lot out of them, making them breathless. They then need higher oxygen and ventilator support to help them recover from each session.<br />
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She seems to be improving. But as typical of such kids, progress is always slow and we just have to follow her pace.<br />
<br />Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com1tag:blogger.com,1999:blog-5562020082504800049.post-81103856758387281432018-09-08T20:40:00.002+08:002018-09-08T20:42:07.642+08:00That Empty Feeling<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_fw_o3WlX5VWG-3nYv8Q_Qu7_b1MfqeEKc-AsmM1YJVUn_rF4dED6pTqCFdlkg7TcVFZ3Lduq8x2Cb3fgjO2uWZSEigVWCKPV9Ou49mtX2VAdrXsxDwRuIYOC0DtjzFHWxQsIvbH6aA/s1600/20180908_202618.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis_fw_o3WlX5VWG-3nYv8Q_Qu7_b1MfqeEKc-AsmM1YJVUn_rF4dED6pTqCFdlkg7TcVFZ3Lduq8x2Cb3fgjO2uWZSEigVWCKPV9Ou49mtX2VAdrXsxDwRuIYOC0DtjzFHWxQsIvbH6aA/s400/20180908_202618.jpg" width="400" /></a></div>
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One of the things that sticks out like a sore thumb when Vera is in hospital is her home bed.<br />
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It just feels weird not to see her in it, happily keeping herself occupied with a musical toy, as we walk past.<br />
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The room has been given a clean sweep, de-germed, all ready for her return.<br />
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Praying that her recovery goes smoothly and she doesn't catch another bug before she heals from this one.<br />
<br />Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-54721745314865907042018-09-06T15:13:00.000+08:002018-09-07T00:22:42.726+08:00Back At Base Camp<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOVQZeXqR0stZYVNBeSnqNLDk7krEAzuz7XCW65Ngsk4Zdx_f3ShTYLExfAEvamvbmhBo0LaLKcPJLyTmFbTH9vvvEK5mwT-pTryw3DFQFiswQBWDffDekFm2Ntebt6dZi6qpyq0mvmbE/s1600/rm+article.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1248" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOVQZeXqR0stZYVNBeSnqNLDk7krEAzuz7XCW65Ngsk4Zdx_f3ShTYLExfAEvamvbmhBo0LaLKcPJLyTmFbTH9vvvEK5mwT-pTryw3DFQFiswQBWDffDekFm2Ntebt6dZi6qpyq0mvmbE/s400/rm+article.jpg" width="311" /></a></div>
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While 'Love Is Not Rare' was about to air for the first time yesterday, we were scurrying to pack Vera's hospital bag.<br />
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I would have sat with Vera next to the radio to savour the moment of hearing it play, but I guess life happened in opposites yet again.<br />
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I called a cab and caught the song on air just as it arrived.<br />
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We're back at our second home and 'base camp' - the Ronald McDonald Family Room.<br />
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Vera is in the good care of a medical team we trust, and getting the support she needs to get better. It's always a relief to have capable hands take over the medical care.<br />
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It was a nice surprise, to browse through the 2016 Ronald McDonald House Charities Annual Report to see an article I'd contributed back then - from Vera's blog (<a href="http://mylittlevera.blogspot.com/2016/04/the-house-that-supports-us.html" target="_blank">The House That Supports Us</a>). Vera was much smaller just 2 years back.<br />
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The common cold that we get once or twice a year sends medically fragile kids like Vera straight to hospital for medical support. We bounce back from a viral infection in 5-7 days. These kids take 2-4 weeks.</div>
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Thank you all for your well-wishes for Vera's recovery. It will just well, not be as speedy.</div>
Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-63510395247492906002018-09-04T22:10:00.000+08:002018-09-18T13:02:30.453+08:00Vera Catches The Bug<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNXJvyWBkG__jr0JRr4VRPgQoVhAZPC1q3FF-EUJe4FCM0t5F7pqD_S4G9HCQlCmMhvaL7-4mCDIOBij_y4R_9NqrIk7J1rC1tHSxt1nL9jsjZt7Kl24GvjoVG248VQkc7wwt5_NP9MC0/s1600/20180904_171532.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNXJvyWBkG__jr0JRr4VRPgQoVhAZPC1q3FF-EUJe4FCM0t5F7pqD_S4G9HCQlCmMhvaL7-4mCDIOBij_y4R_9NqrIk7J1rC1tHSxt1nL9jsjZt7Kl24GvjoVG248VQkc7wwt5_NP9MC0/s400/20180904_171532.jpg" width="400" /></a></div>
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<span style="font-family: Georgia, Times New Roman, serif;">I've been down with a throat infection and a bad cough the past week (through the launch of the song). I passed it to Ian whose been down these 2 days. Today, it's no surprise Vera has joined us.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">There will be no going to LOVE 97.2FM to sing live to her now. They will air a pre-recorded interview instead at 3pm Wednesday 5 September. They will also play LOVE IS NOT RARE for the first time on air. Wish we could have been there but it was not to be. With medically fragile children like Vera, surprises like this and sudden change of plans are only to be expected. </span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">We're on 3 hourly suctioning + nebulizer n percussion now. Praying she rides through this bout at home. </span></div>
Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-31008369552426712962018-09-01T18:06:00.001+08:002018-09-06T06:20:57.034+08:00Love Is Not Rare Song Out Now<style type="text/css">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaw43zCRMS9vA6jFRjZiYVFBxjh0Tg_BAlhIUyDnlBYI5nfJ1W46eZGHx0JR0ahHMg5JqGIMtqq4c28jskl6Yz3UdB7Z3YP_ghb4f9OzguD4XQM7Oa16IYUB-f4HYQXpS4IWsbGNwOwPQ/s1600/05-Jul-18-DSCF4268+%25C2%25A9+Isabelle+Lim-3+2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaw43zCRMS9vA6jFRjZiYVFBxjh0Tg_BAlhIUyDnlBYI5nfJ1W46eZGHx0JR0ahHMg5JqGIMtqq4c28jskl6Yz3UdB7Z3YP_ghb4f9OzguD4XQM7Oa16IYUB-f4HYQXpS4IWsbGNwOwPQ/s400/05-Jul-18-DSCF4268+%25C2%25A9+Isabelle+Lim-3+2.jpg" width="400"></a></div>
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Photo by Isabelle Lim</div>
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<span style="-webkit-text-stroke-width: initial;">Dear family, friends and Vera’s fans from near and far, </span></div>
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<span style="-webkit-text-stroke-width: initial;">Thank you for your overwhelming support for the <a href="http://yinmay.com/" target="_blank">launch of the ‘Love Is Not Rare’ song</a>.</span></div>
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<span class="s1">When people full of heart come together, miracles like this can happen. The song was arranged and produced by <a href="http://typewriterband.com/" target="_blank">Patrick Chng</a>, and the stories of the families sensitively brought to screen by director Shane Mok of <a href="http://backbuttonmedia.com/" target="_blank">BackButtonMedia</a> and his team.<span class="Apple-converted-space"> <a href="http://issyshoots.com/" target="_blank">Isabelle Lim</a> lent her wonderful eye for seeing the best moments through her lens. Of course, not forgetting the man for stands for 'Love Is Not Rare', <a href="http://www.rdss.org.sg/leadership/" target="_blank">Kenneth Mah</a>, founder of Rare Disorders Society Singapore.</span></span></div>
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<span class="s1">To support children with rare disorders, please visit <a href="http://rdss.org.sg/">rdss.org.sg</a></span></div>
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<span class="s1">If you would like to support the song, please download it at <a href="http://yinmay.com/"><span class="s2">yinmay.com</span></a> or at <a href="http://yinmay.bandcamp.com/"><span class="s2">yinmay.bandcamp.com</span></a> </span></div>
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<span class="s1">80% of the net proceeds will be donated to the Rare Disorders Society (Singapore).</span></div>
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Thanks for sharing the love : )</div>
<br>Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-77181086144858214412018-08-29T12:29:00.000+08:002018-09-01T18:07:46.330+08:00Launching An Original Song Soon<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipAc17j_7sjJihp3hFQN8JfJvgj_Fb94uX6Z7X0dfi0pJFDzW27ORkFFCO0Htpe-8Piw-mYqZu9zOc8eR1X01dbvU_Iz3ajd68uS-IJE16KcwBR8Y4ExkYsLK8qQlVHa4YOEAPTcYOOmc/s1600/05-Jul-18-DSCF4335+%25C2%25A9+Isabelle+Lim.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipAc17j_7sjJihp3hFQN8JfJvgj_Fb94uX6Z7X0dfi0pJFDzW27ORkFFCO0Htpe-8Piw-mYqZu9zOc8eR1X01dbvU_Iz3ajd68uS-IJE16KcwBR8Y4ExkYsLK8qQlVHa4YOEAPTcYOOmc/s400/05-Jul-18-DSCF4335+%25C2%25A9+Isabelle+Lim.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">During the music video shoot for Love Is Not Rare song. Photo by Isabelle Lim</td></tr>
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When you reach mid-life and have not yet done that thing that is your passion, that thing that is such a big part of who you are from the start, you can resort to unexpected measures.<br />
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Like quitting a really good job with great bosses, great colleagues at a good company. </div>
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Double hospitalisations of the kids last year triggered the move. Against all logic, I felt I needed to take a career break. I'd been juggling work and Vera's hospitalisations, keeping both balls in the air for the last 6 years. </div>
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I knew what I was going to do. Get my songs out. Starting with the ones inspired by Vera's journey. But I wanted to release them in a meaningful way. Using them to raise awareness for some cause. Because a song is bigger than its songwriter.</div>
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<br /></div>
<div>
I decided to start with Love Is Not Rare. I had been inspired by Vera and some parents and children I'd got to know through Rare Disorders Society Singapore. 'Love Is Not Rare' is their tagline. I was touched by what they were doing for their medically fragile child at home - far more intensive care than what I had to perform for Vera.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbxAvBdZrbmKSOdAR2Uh5ptGYi4G6H22lwidb5iAa4TMHZs6mk6q8P5KV6YIbrrlXQxGbnuOidv2U8Fo2peeZTblWqe2H5tS6O5mBfj98U6OCf_gsez30fz5Q7CU21jKDElD0LcvlXPsE/s1600/05-Jul-18-DSCF3138+%25C2%25A9+Isabelle+Lim.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbxAvBdZrbmKSOdAR2Uh5ptGYi4G6H22lwidb5iAa4TMHZs6mk6q8P5KV6YIbrrlXQxGbnuOidv2U8Fo2peeZTblWqe2H5tS6O5mBfj98U6OCf_gsez30fz5Q7CU21jKDElD0LcvlXPsE/s400/05-Jul-18-DSCF3138+%25C2%25A9+Isabelle+Lim.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Great team on the job - checking out the shots with Shane and Brandon of Back Button Media. Photo by Isabelle Lim</td></tr>
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<div>
<br /></div>
<div>
Through Kenneth, the Executive Director of the society, I got to know Patrick Chng, who heartily agreed to help arrange and produce the song. Then through a parent in RDSS, we got to know a video production company we wanted to work with. And dear cousin Isabelle offered to help me with all the photography needed. Even not being able to hear the singing and music cues does not stop her from shooting a music video. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzfTcCXAYhpEy6G0rhJiv1UE-zjdJvNsJVk8eA-oT8rq1yOqh3Nf8oIknyLVdJdWGM8Wkzfiy2y9XL2KnTthXdtUAWh3zBS_W9X10pTH-KswNclHx3wLl1SLwW7A4S8ZILaMAPCk8aPe0/s1600/IMG_0206.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzfTcCXAYhpEy6G0rhJiv1UE-zjdJvNsJVk8eA-oT8rq1yOqh3Nf8oIknyLVdJdWGM8Wkzfiy2y9XL2KnTthXdtUAWh3zBS_W9X10pTH-KswNclHx3wLl1SLwW7A4S8ZILaMAPCk8aPe0/s400/IMG_0206.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cousin Isabelle doing what she does best - capturing the best moments.</td></tr>
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<div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkVuFmRLNKRyzP0dUtitYOSuBdLkDgVD_QAuyCmv-ly7u-L0Ll6QRlGkzCURKk93qmSU6yoCFxlxY43h_Rpc6MTjQh0wUnfLOGw-Wgz6NrFBzVQ_HnpMTY7eMp3sW5Hrs16y1LBeCh4z8/s1600/05-Jul-18-DSCF3552+%25C2%25A9+Isabelle+Lim.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1067" data-original-width="1600" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkVuFmRLNKRyzP0dUtitYOSuBdLkDgVD_QAuyCmv-ly7u-L0Ll6QRlGkzCURKk93qmSU6yoCFxlxY43h_Rpc6MTjQh0wUnfLOGw-Wgz6NrFBzVQ_HnpMTY7eMp3sW5Hrs16y1LBeCh4z8/s400/05-Jul-18-DSCF3552+%25C2%25A9+Isabelle+Lim.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Aunt Jacqueline with her infectious cheer trying to get me to relax...I'm too tense!</td></tr>
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<div>
And so the heavens heard and things fell into place. </div>
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<br /></div>
<div>
This song isn't just about myself and Vera. It's about the journey that all caregivers of medically fragile children live through, on a daily basis. It is about a love that is filled with simple joys, but also hurdles, heartache and pain. </div>
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<br /></div>
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8 months this project has taken to fruition. I'm so thankful for all the people who made it possible, and the support from Ian that allows me to realise this passion project while he holds up the fort. And to my parents who step in to help out whenever I ask. </div>
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Am looking forward to sharing the music video soon. </div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-3634321331542235432018-08-29T11:45:00.003+08:002018-09-11T15:12:27.983+08:00I Have To Be Her Voice<div class="separator" style="clear: both; text-align: center;"><br></div>
<div class="p1">It's not funny to wake up when half your life is gone, and realise what you really need to be doing.<br></div>
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<span class="s1"><br></span></div>
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<span class="s1">And what I want to do, is share the songs Vera's life has inspired me to write. They are borne from 10 years of being on this journey with her and all the people who have come into our lives because of her.</span></div>
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<span class="s1"><br></span></div>
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<span class="s1">While it is very heartening to see lots of effort being made to celebrate the sporting and artistic abilities of persons with disabilities, what about the severely disabled? Those like Vera who can't talk, can't understand what we're saying, and really can't do very much besides lie there?</span></div>
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<span class="s1"><br></span></div>
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<span class="s1">There is purpose to their life too.</span></div>
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<span class="s1">They are here to let us stare weakness and imperfection in the face and understand them intimately. To give us a chance to see that true beauty lies within imperfection, that true strength comes from weakness.</span></div>
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<span class="s1"><br></span></div>
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<span class="s1">All these years, Vera has helped me to heal, through the painful yet cathartic process of songwriting.</span></div>
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<span class="s1"><br></span></div>
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<span class="s1">Two years ago, she pulled back from the brink. She wasn't done yet. She's inspired 2 more songs since then.</span></div>
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<span class="s1">I have to be her voice.</span></div>
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</style>Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-58282324398545471512018-08-06T13:47:00.000+08:002018-08-06T15:28:06.223+08:00Let's Take Part Anyway<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6uZB3SnOq5CmiBfp0aNIKSW-AKWDJdHfFGLIrVNT5aLLyx13y3iu_TMAnS2Cqlp3lah1b1ecajJ3jIyg6SrbzFPHgMDlhdoVRnmBIBGZpyMxHC5gGQs6npnqAfwV5rHO3_JqpIJrN5I8/s1600/IMG-20180805-WA0003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1052" data-original-width="1499" height="280" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6uZB3SnOq5CmiBfp0aNIKSW-AKWDJdHfFGLIrVNT5aLLyx13y3iu_TMAnS2Cqlp3lah1b1ecajJ3jIyg6SrbzFPHgMDlhdoVRnmBIBGZpyMxHC5gGQs6npnqAfwV5rHO3_JqpIJrN5I8/s400/IMG-20180805-WA0003.jpg" width="400" /></a></div>
<br />
I never dream that I'd be able to take Vera out on a boat. So when I checked out the Inclusive Sports Festival and realised that they were having a sailing tryout in an indoor swimming pool, I jumped at the chance.<br />
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It'll be stable enough, safe enough for her. No choppy seas or strong winds.<br />
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The festival was to expose more abled special needs individuals to different competitive sports and hopefully get them interested to take them on. It was also a good chance for the public to experience various disability sports. But best of all, it gave Vera the once in a lifetime chance to safely 'sail' in a boat.<br />
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It wasn't easy to haul her out of the boat, and she got a little scared at the end, but I'm glad we did it.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnE-On4-7V6p8jFaPyGpzBeSZHsqj0E1HOKPQoMjeCIbPv_Zll4tLuTomg4KoVmVF4BPXoToP8PddOUqfElAp9zR-QUu5WG74AGlOZX5tsDrLgbTHqdMnU-fJzVl-TfNXM68l60lAzXgE/s1600/20180805_141902.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1030" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnE-On4-7V6p8jFaPyGpzBeSZHsqj0E1HOKPQoMjeCIbPv_Zll4tLuTomg4KoVmVF4BPXoToP8PddOUqfElAp9zR-QUu5WG74AGlOZX5tsDrLgbTHqdMnU-fJzVl-TfNXM68l60lAzXgE/s400/20180805_141902.jpg" width="257" /></a></div>
<br />
Over at the land sports, Vera tried throwing the ball. Yes she is unable to aim and see where the ball is even going. But she got a kick out of throwing the ball with my help. I know what some of the volunteers were thinking 'This girl can't even aim or look at where the ball lands, yet her mother is still letting her throw." They smiled tentatively at me.<br />
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When you have a child like Vera, you "Do It Anyway". When you have a child like Vera, it isn't about the aim of the game, but about getting her to try. When you have a child like Vera, it's all about the journey, not the destination.<br />
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It's a mentality I learnt from many good special needs teachers, who continue to communicate with and teach students with very low ability and response. They have my utmost respect.<br />
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Come Vera, let's game on!Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-28585320378083720052018-05-25T08:44:00.001+08:002018-05-25T08:50:51.948+08:00The Trisomy 18 ConnectionOnce in a while I'll get an email from a new Trisomy 18 parent wanting to connect.<br />
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They have found us through Vera's blog or through someone who knows about Vera's blog.<br />
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I'm heartened to know that this blog continues to connect us where it would be near impossible to otherwise. Hospitals are not allowed to divulge information about cases to other parents. Although I wish they would if they have expressed that they are okay with sharing and supporting other parents.<br />
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As a new Trisomy 18 parent, the first thought we had when Vera was born was: "Are there others in my situation? Parents I can learn from? Get an idea of what such a child would be like? I need an experience map!"<br />
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To Annabelle's mom, Zane's mom, Mallory Rose's mom and many others, we couldn't have done it without your guidance, back when there wasn't facebook groups.<br />
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And so I keep up the blog, hoping to pay it forward.<br />
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If you know a family with a Trisomy 18 baby, please share this blog with them.Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-57787769277904688202018-05-11T13:15:00.002+08:002018-05-16T17:37:12.632+08:00Quattro Air for Her<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqSoE4EMGiLJii-taR-OE08MMYlCct_YnQJtv_CPK-hvxDf8xPwMAIm2A5sKT37vBlxRpT07g6EjlX7iH_YC4R7MPV7MNNWOFyd4e1eh21c0TMs3hz3DOcIrFEg_bMGH6o5VrM8-Ssbmc/s1600/mask.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqSoE4EMGiLJii-taR-OE08MMYlCct_YnQJtv_CPK-hvxDf8xPwMAIm2A5sKT37vBlxRpT07g6EjlX7iH_YC4R7MPV7MNNWOFyd4e1eh21c0TMs3hz3DOcIrFEg_bMGH6o5VrM8-Ssbmc/s400/mask.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Quattro Air for Her - Resmed adult full face mask</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td class="tr-caption" style="font-size: 12.8px;">Vera needs a full face mask for her Obstructive Sleep Apnea - one that covers both her nose and mouth.</td></tr>
</tbody></table>
The problem is, hardly any companies manufacturer them for kids. So over the years, we have been buying adult NASAL masks to cover her nose and mouth. We've gone from nasal M to L to XL. XL being the biggest nasal mask size out there, it was a matter of time that we would have to transition Vera to adult full face masks, starting with the XS or S size.<br />
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I bought so many - but they were just too big. She was what we call "in between".<br />
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Finally, today, I brought out one of 3 full face masks I'd purchased 2 years ago, waiting for the day she can transition to them.<br />
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And the Resmed Quattro Air for Her fit perfectly! It's the XS size, thank goodness there's an XS size. Which means my years of online mask hunting, buying masks without knowing if they'll fit her - are over. From now on, it's just a matter of getting the same mask, just a size up, with just a call away from the local vendor.<br />
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I can breathe easy now.Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-35256602749554491212018-03-13T23:32:00.001+08:002018-03-13T23:37:16.105+08:00Rock of the Family<p dir="ltr">Quietly she listens and stares. At the people talking near her.</p>
<p dir="ltr">So intently, that you would think she has really good sight and hearing. </p>
<p dir="ltr">Truth is, Vera only has moderate sight in one eye, and moderate hearing in one ear. </p>
<p dir="ltr">But time and again, she has shown us, that she sees and hears with her heart. She senses people, at "heart" level. </p>
<p dir="ltr">And at night when she pulls us in to hug us repeatedly with her one good arm, I know without a doubt that she is loving us back. </p>
<p dir="ltr">Vera's wordless reservoir of love is sustenance for our hearts. She is the emotional rock of our family. </p>
Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-37756573334006396442018-01-30T17:11:00.002+08:002018-02-05T13:14:03.133+08:0010 Years of Life With Vera <div dir="ltr" style="text-align: left;" trbidi="on">
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC0igsWmmFek3F7yFn3Ch0gjD2JcvIL9hbdNK7auj1xMTD_TTCzknzEx_cO7rNFJ1IP4xXSk1d1xZ5jpXG2qGHlHmxDapnLzy1Ig7Tppmz74CV2can_a1mbAJ95OEBozFJbkSbyEX0TI0/s1600/us.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiC0igsWmmFek3F7yFn3Ch0gjD2JcvIL9hbdNK7auj1xMTD_TTCzknzEx_cO7rNFJ1IP4xXSk1d1xZ5jpXG2qGHlHmxDapnLzy1Ig7Tppmz74CV2can_a1mbAJ95OEBozFJbkSbyEX0TI0/s400/us.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Photo credit: Bridgette See, taken on New Year's Eve<br />
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Vera is turning ten this February.</div>
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Who would've thought she'd make it to ten? In Trisomy 18 terms, where life expectancy of survivors is known to be the late teens, it's a miracle she's come this far. </div>
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We've been on this caregiving road with her for ten years. </div>
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Here's what I've learnt on this journey.</div>
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<b>You can get comfortable living with uncertainty.</b></div>
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We learnt she had Trisomy 18 twelve days after her birth. She was still in the <a href="http://mylittlevera.blogspot.in/2008/06/icu-days.html" target="_blank">ICU</a>. Our immediate family was called for an urgent gathering at the hospital where they <a href="http://mylittlevera.blogspot.in/2008/06/grim-diagnosis.html" target="_blank">broke the news</a> - basically, that Vera had many many medical problems. And that life was going to be Very Very Uncertain. There wasn't going to be a 'How To' manual moving forward. The mothering bible 'What to Expect In The First Year' wasn't going to be much help. From that day, I learnt that life can change in a day. I learnt that Uncertainty was going to be a big part of our lives moving forward. Uncertainty was a new member of our family. Over the years, we've become rather well acquainted and today, I can sit next to Uncertainty and not be afraid to look her in the eye. </div>
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<b>Th</b><b>e real 'mother' of Vera is her father. </b></div>
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We kept to ourselves most of that first year. They said 9 out of 10 wouldn't make it past their first birthday, so we wanted to give her all our time. The <a href="http://mylittlevera.blogspot.in/2008/06/new-mom.html" target="_blank">first year</a> really showed me what my husband Ian is made of. He's not just mentally stronger, but more able to manage the routine tasks of tube-feeding and <a href="http://mylittlevera.blogspot.in/2008/11/then-now.html" target="_blank">burping a colicky baby</a> for hours while battling tiredness. Up till today, this daddy still bathes her and changes her diaper. He is Vera's hero.</div>
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<b>It's humbling to receive the love of the community. </b></div>
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Having a special needs child exposed us to a world of care and support beyond our immediate family. <a href="http://mylittlevera.blogspot.in/2016/04/doctors-with-3cs.html" target="_blank">Doctors, nurses, therapists</a>, teachers, fellow special needs mommies, <a href="http://mylittlevera.blogspot.in/2008/07/milk-angel.html" target="_blank">milk mommies</a>, the volunteers at the<a href="http://mylittlevera.blogspot.in/2016/04/the-house-that-supports-us.html" target="_blank"> Ronald McDonald House</a>. They all treated Vera no different, in fact, more special. They spoke to Vera as if she knew what they were saying. I realised that to survive this journey, I needed the support of the wider community. They opened my eyes to love beyond that for your own blood. It was humbling to receive all the external care and support. </div>
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<b>She ain't a burden; she's a blessing. </b></div>
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Vera's is a love without language, without sound, without words. But her love is pure, unbridled and whole-hearted. Even if I do not see her sometimes for long stretches, she does not, or does not know how to mind. She's always ready with <a href="http://mylittlevera.blogspot.in/2012/12/she-learns-to-hug-us.html" target="_blank">a hug</a> and<a href="http://mylittlevera.blogspot.in/2013/07/making-smile.html" target="_blank"> a smile</a> when I finally appear. It is a blessing to receive her abundant, unconditional love.</div>
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<b>You can lose your faculties just like that. </b></div>
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2016 exposed us to the painful experience of seeing Vera lose some mobility functions. The <a href="http://mylittlevera.blogspot.in/2016/03/intubated.html" target="_blank">near-death episode</a> took with it her laughter, the movement of her right hand, her ability to <a href="http://mylittlevera.blogspot.in/2012/07/wheres-vera-2.html" target="_blank">penguin scoot across the room</a>. We probably won't see her <a href="http://mylittlevera.blogspot.in/2012/08/encore.html" target="_blank">clapping her hands</a> again. Or hear her laugh heartily again. But because we cherished her every sound and movement when she possessed them, we are at peace with the loss. </div>
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<b>We cannot possibly do this on our own. </b></div>
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As Ian and I grow older, we are starting to feel the strain of 24kg Vera on our backs and shoulders. It is increasingly clear that this caregiving, weight-lifting journey is not sustainable without external help. Especially when we fall sick, sometimes at the same time as the kids. We have been very lucky all of Vera's caregivers have loved her whole-heartedly and taken very good care of her. It is no joke looking after a child who cannot communicate her needs, and remains pretty much a baby throughout her life, relying on you for everything. Vera is where she is today thanks to the caregivers who have looked after her for the last 10 years, nursing her through every viral episode, accompanying her on every hospital stay. </div>
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As Vera turns ten this month, I look back and realise how much she has changed my life. This Trisomy 18 child. </div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-61320502630493740742018-01-10T11:37:00.001+08:002018-08-06T15:27:12.880+08:00Luxury of Time<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjym_oC2jk-URrKoaV3s2TmgNkW9SRrX2H8E1dJYnQ8firnJtPCpHRM9WrW6Co4W9xhRcbytQQCFWv-2p7Rf6SbDnwKleijoSQugMk1wil49hqCTGPZi0VdXi501LBlUzSjscfEji7XaTI/s1600/IMG_20180110_095008.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjym_oC2jk-URrKoaV3s2TmgNkW9SRrX2H8E1dJYnQ8firnJtPCpHRM9WrW6Co4W9xhRcbytQQCFWv-2p7Rf6SbDnwKleijoSQugMk1wil49hqCTGPZi0VdXi501LBlUzSjscfEji7XaTI/s400/IMG_20180110_095008.jpg" width="300" /> </a> </div>
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Luxury is seeing this girl wake up in the morning and getting her first hug.</div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-7751779331634349232017-10-16T10:28:00.001+08:002017-12-22T15:58:20.832+08:00This Try-somy Girl<div dir="ltr" style="text-align: left;" trbidi="on">
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This Try-somy girl tries damn hard. Slowly she has regained strength, little by little over the last year. She's back doing her <a href="http://mylittlevera.blogspot.in/2014/04/abs-training-part-3.html">crunches</a>, and back <a href="https://mylittlevera.blogspot.in/2012/07/wheres-vera-2.html">on her tummy</a>. </div>
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She used to be able to "penguin scoot" across the floor, but we're not expecting that to happen again. We're just happy she's improved and in her awareness as well. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikNOQe0rFvEgs7Nw4duVty2-GmTYBksZXzp9PC0T0l6mF-6Ns2LhbfWnFGKTbsAUUwdur7ooObGw4DGO2lLwpy3BptCYsUyqIy45nhcPJIIod2a47ArOsCcEEd6offb0Her-D9ZQ4CU-8/s1600/IMG_20171015_194045.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikNOQe0rFvEgs7Nw4duVty2-GmTYBksZXzp9PC0T0l6mF-6Ns2LhbfWnFGKTbsAUUwdur7ooObGw4DGO2lLwpy3BptCYsUyqIy45nhcPJIIod2a47ArOsCcEEd6offb0Her-D9ZQ4CU-8/s400/IMG_20171015_194045.jpg" width="400" /> </a> </div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-18623299881765849172017-07-09T21:20:00.000+08:002017-07-12T18:08:27.142+08:00Double Whammy<div dir="ltr" style="text-align: left;" trbidi="on">
June was supposed to be the school holidays. It was no holiday for us.<br />
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We spent the last 3 weeks of June with Vera in hospital. She has a viral infection - RSV. Thankfully, it turned out to be not as serious as the one <a href="http://mylittlevera.blogspot.in/2016/03/rsv.html">last year</a>. </div>
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Then, before she could be discharged, D got sick. After 7 straight days of high fever, we brought him to the hospital. It turned out to be Mycoplasma Pneumonia. </div>
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From doing our 'hospital rounds' at one hospital, to 'hospital rounds' at another. In total, Vera was sick for 5 weeks and Daen for 2 weeks. </div>
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The after math: Ian and I are burned out. (Both of us once drove away from our intended destination, our minds were not on the road.)</div>
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I cannot stay overnight at the hospital - I can't think straight and work with the doctors in the day. </div>
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I do the day shifts, and our helper and Ian do the nights. </div>
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Ian did all the nights with D, saved for the last one (me). It is no joke trying to sleep in a room full of infants crying through the night. </div>
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No wonder patients and caregivers are grumpy! Lack of sleep is a killer. </div>
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For the first time, we did a double discharge - on consecutive days. </div>
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We're all back home now. </div>
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Pray no more hospital stays for 2017. </div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-82792969274165026472017-06-11T14:59:00.001+08:002017-08-04T16:02:58.503+08:00Gaining Strength<div dir="ltr">
Vera is improving, slowly but surely. Mummy bought a bench, so we can sit with and support her while she practises her sitting. </div>
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Sorry for the lack of posts - was dealing with a 3 month long on off illness, settling into a new job, and had to manage a change of caregiver for Vera. </div>
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Things have started to settle down. We are hopeful that the second half of the year will be more peaceful. </div>
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Thanks for the support, our dear readers!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIIx_jMcALChyphenhyphen_mY_YUNkH3gDS06IwQAA9XDsPPe1xTUHO2IYrWl4lpwNitU3wD_p5Ku58S2o4OWKhbC6TIdcToqXLybHWAzph-b8vGhDGVKMs9FBqz-0bwpvPVzeHehlxxWEskwWADKQ/s1600/IMG_20170611_143617.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIIx_jMcALChyphenhyphen_mY_YUNkH3gDS06IwQAA9XDsPPe1xTUHO2IYrWl4lpwNitU3wD_p5Ku58S2o4OWKhbC6TIdcToqXLybHWAzph-b8vGhDGVKMs9FBqz-0bwpvPVzeHehlxxWEskwWADKQ/s400/IMG_20170611_143617.jpg" width="400" /> </a> </div>
Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-27068374876420972972017-01-20T12:02:00.000+08:002017-01-20T12:04:05.531+08:00The High Cost of Special Needs Equipment Our Kids Need<div class="separator" style="clear: both; text-align: left;">
As a special needs parent, one major bugbear we have is the cost of special needs equipment. They are extremely expensive.</div>
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Why? </div>
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Answer: They are made in the US. And in the US, special needs equipment are covered by government insurance. So no direct out of pocket from consumers, hence no direct incentive for manufacturers to lower their cost. </div>
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And our kids need them. Bath chairs, remote control chairs to give a sense of independence and freedom, gait trainers to teach children to walk, and of course pushable wheelchairs. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihT7ykDh_uSsU5IcoXLv8131NrxSVyviOK2vIg5y5g9drH9gwQ0gE8zWGGGcKEQXhA63Zmvom5tSAtoL1VGqnhtkPH3z3d__CjTFs3Yt4jDG7rI6C4Z_t8xWXb_WpLMdDobsnXNfxdMwo/s1600/bath.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihT7ykDh_uSsU5IcoXLv8131NrxSVyviOK2vIg5y5g9drH9gwQ0gE8zWGGGcKEQXhA63Zmvom5tSAtoL1VGqnhtkPH3z3d__CjTFs3Yt4jDG7rI6C4Z_t8xWXb_WpLMdDobsnXNfxdMwo/s400/bath.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bath chair for safe bathing</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaYpHI9Mqnd-_3IGtZEaxWXPcCieri3wfhz2s605Q7AIfYctYtvTNiIHrlS4W9ZqufHyfLiVJbwaKYa7zSTckt-yRYmGy6_KFqxoiya17kvpE1LactSBHn71Qa6FZ8Lv9AYdjY90wy5j4/s1600/motion+control.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaYpHI9Mqnd-_3IGtZEaxWXPcCieri3wfhz2s605Q7AIfYctYtvTNiIHrlS4W9ZqufHyfLiVJbwaKYa7zSTckt-yRYmGy6_KFqxoiya17kvpE1LactSBHn71Qa6FZ8Lv9AYdjY90wy5j4/s400/motion+control.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Remote control wheelchair</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJFgfEg9uBRl6vICASh5JUGB7_uhKA7id4fXkwHRG47-7vCUUVByUIj41mEn8APTP18KhJYv4fpNS__WpVyE7iun7K7HLCNriVh63pqIaEa1YhVYqgNPiFEbNWhV7J3hbAfhSvQ0F-Z8E/s1600/walkers.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJFgfEg9uBRl6vICASh5JUGB7_uhKA7id4fXkwHRG47-7vCUUVByUIj41mEn8APTP18KhJYv4fpNS__WpVyE7iun7K7HLCNriVh63pqIaEa1YhVYqgNPiFEbNWhV7J3hbAfhSvQ0F-Z8E/s400/walkers.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gait Trainers that help kids learn to walk</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm-mhlXgbh0YrZtH5TawgFDQ_rO54RiOWtVicdN9Z6fMk0YTIw43QAWawO0BVMXkGgmaUJp7ormJHS-E-5ENKGKkMLHRV5j-m0tbib9xhCVxrRFt-aTTDU1razewX3cRrcsdAg1D7963s/s1600/newplace.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm-mhlXgbh0YrZtH5TawgFDQ_rO54RiOWtVicdN9Z6fMk0YTIw43QAWawO0BVMXkGgmaUJp7ormJHS-E-5ENKGKkMLHRV5j-m0tbib9xhCVxrRFt-aTTDU1razewX3cRrcsdAg1D7963s/s400/newplace.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The good folks at <a href="http://paediatricss.com/" target="_blank">Paediatric Seating Solutions </a>Sam and Jimmy (above) help kids find suitable equipment.</td></tr>
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For many special needs parents like myself, these are the "luxury goods" we own, in place of luxury bags or shoes.<br />
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Here are Vera's necessary items - more expensive than any piece of furniture in our home. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAleBsVygDzSAFlRR3V7RaHZZTMAOhDbmYpqdAaTvuonWRre5C7IsOHab7sWVk8ay5P9mpb-90ugA7mEcMWmX6ybbYkfz3id3dLYfyILqNDvNk5WF-v1V2QXAvpzwjYiSiagVw5miQZBQ/s1600/IMG_20170120_113118.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAleBsVygDzSAFlRR3V7RaHZZTMAOhDbmYpqdAaTvuonWRre5C7IsOHab7sWVk8ay5P9mpb-90ugA7mEcMWmX6ybbYkfz3id3dLYfyILqNDvNk5WF-v1V2QXAvpzwjYiSiagVw5miQZBQ/s400/IMG_20170120_113118.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rifton Activity Chair approx $5000</td></tr>
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<a href="https://paediatricss.com/product/activity-chair/" target="_blank">Rifton Feeding cum Activity Chair</a> that allows tilting forward and backward with side supports for her Scoliosis and for easy moving around the house. Without this chair she would basically lie in bed the whole day or on the floor.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimjkfts6GWeK8fhF5wawdwROHjYuCC0oN1dF9wkhLYKOWAbJ8q1B-19ebgj2WGcXTCtgYZtrpvdFOcjMt18eHzJi2Bz6HNOTSPYubhlPbPnaNUcoPY3eHZ6vdd0DPp2r66072h1JC6DZE/s1600/IMG_20170120_114532.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimjkfts6GWeK8fhF5wawdwROHjYuCC0oN1dF9wkhLYKOWAbJ8q1B-19ebgj2WGcXTCtgYZtrpvdFOcjMt18eHzJi2Bz6HNOTSPYubhlPbPnaNUcoPY3eHZ6vdd0DPp2r66072h1JC6DZE/s400/IMG_20170120_114532.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Zippie TS Wheelchair</td></tr>
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<a href="https://paediatricss.com/product/zippie-ts/" target="_blank">Zippie TS Wheelchair</a> for going out to school 5 days a week. Also allows tilting and with support for Scoliosis. High enough so we don't have to bend so low (backache) to lift Vera out. This was a gift from <a href="http://www.makeawish.org.sg/" target="_blank">Make-A-Wish</a> which we really appreciated.<br />
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-21892968093007617962017-01-14T19:35:00.001+08:002017-01-15T18:40:49.845+08:00Vera Can Go Places Now<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinI1lC8DW6C3MwlgMOquRu9yIRDS2daVPZG7GRCGnlU74FbtrUe6p7apbL4bRFxnqoJOsXp3-hyQsNE7nfJyq-3-WMlTlu5J-bcdtRlmNVXBhdRHtAXkkKY8gdOCF2ozm7y4YJOPRx9uk/s1600/IMG-20170107-WA0017.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinI1lC8DW6C3MwlgMOquRu9yIRDS2daVPZG7GRCGnlU74FbtrUe6p7apbL4bRFxnqoJOsXp3-hyQsNE7nfJyq-3-WMlTlu5J-bcdtRlmNVXBhdRHtAXkkKY8gdOCF2ozm7y4YJOPRx9uk/s400/IMG-20170107-WA0017.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Make-A-Wish threw a balloon-filled Wish Party for Vera and our friends and family.</td></tr>
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On 7 January this year, Vera got a new wheelchair from <a href="http://www.makeawish.org.sg/" target="_blank">Make-A-Wish</a>.<br />
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They grant the wishes of children who are chronically sick.<br />
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Each child can have one wish granted. Since Vera cannot tell us what she wishes for, we as her parents get to decide for her.<br />
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It was a simple decision.<br />
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As an immobile child, the only way Vera can see the world is for someone to push her around or sit in a vehicle.<br />
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Vera had outgrown the stroller she had been using since she was 3 years old. She was way overdue for a new one. But because of her Scoliosis - her spine is an S-curve, she needed a wheelchair that could provide customised support so her Scoliosis would not worsen. With such a wheelchair, she could sit for hours in school well-supported.<br />
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On the day of the reveal, wish granters surprised us with a chair decked up in a rainbow of colours.<br />
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The theme: nursery rhymes "The Wheels On the Bus", "Baa Baa Black Sheep" "Humpty Dumpty". Humpty's expression sums it up "Why are you sleeping at your own party Vera???"<br />
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Her day-night reversal meant that she wasn't awake throughout the party.<br />
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It was a shame. There were fun and games, a cake, and pretty decor. The last time we had something like this for Vera was at her 5th birthday.<br />
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It was great to have our family and friends with us at the party to share the joyful moment. The last we had gathered was under<a href="https://mylittlevera.blogspot.sg/2016/04/still-fighting.html" target="_blank"> sombre circumstances</a> at the hospital last April.<br />
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Thank you Sam, Jimmy from <a href="http://paediatricss.com/" target="_blank">Paediatric Seating Solutions</a> and Auntie L for the hard work behind the scenes getting the wheelchair fitted just right for her. Thank you Make-A-Wish for the gift. Vera can go places now.<br />
<br />Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-73357114046899131872017-01-07T00:00:00.000+08:002018-08-05T11:21:21.641+08:00TODAY: Caring for a special child<div class="separator" style="clear: both; text-align: center;">
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Wrote an <a href="https://www.todayonline.com/lifestyle/family/caring-special-child-working-mothers-experience" target="_blank">article</a> that appeared in TODAY, today. Sharing the journey we've been on with Vera.<br />
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<br />Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-89330543157723530482016-12-10T15:14:00.001+08:002016-12-11T21:28:34.296+08:00Two Is Better Than One<div class="separator" style="clear: both; text-align: center;">
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We started 2016 with zero need to suction Vera.</div>
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We end 2016 with daily suctioning, 2-3 times a day. </div>
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This is our new normal, our new 'well' situation. </div>
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Weakened lungs and weaker swallowing ability mean more secretions.</div>
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Daddy holds her because she struggles, while mummy suctions. If I had to do it alone, I would have to use my feet as Daddy's hands. Possible, but not easy.</div>
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Two is better than one.</div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0tag:blogger.com,1999:blog-5562020082504800049.post-27356739507622921642016-11-23T22:00:00.000+08:002018-09-11T15:19:00.312+08:00Respite Admission<div class="separator" style="clear: both; text-align: center;"><br></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Flu bug. Got Daen. Got Vera. Got me. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">That was 2 weeks ago. We were back to 3 hourly suctioning. Even as I was down, we held out at home for as long as we could. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">We were struggling to keep her oxygen requirements above 90%. We had no nebuliser, no oxygen concentrator, no oximeter. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">We have been resistant to turning Vera's room into a hospital set up, but it seemed inevitable. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">Fellow mummy Samantha was a fairy godmother. In a flash, we borrowed a nebuliser and an oximeter from her. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I lasted 8 days. On Day 9, my body refused to move and I just lay in bed. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">It was time for respite admission. Luckily there was a bed. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I do not see it as a weakness that I have failed to take care of Vera at home throughout. I do not feel guilty. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I think no mum dealing with a child with high medical support needs should feel that they should shoulder all the burden of their sick child. Especially if they still had to work.</span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I'm glad we're a phone call away from our NUH Homecare nurse, who arranged everything. I could get proper rest (finally!) while knowing she's in good hands. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">I knew that a flu cycle is at least 14 days for Vera and that she was already on the mend when she was admitted. </span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;">We should be bringing her home soon. </span></div>
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Yin Mayhttp://www.blogger.com/profile/18180684987679728756noreply@blogger.com0