tag:blogger.com,1999:blog-5879875297166802252024-03-14T00:49:35.809-07:00Conquering Down SyndromeUnknownnoreply@blogger.comBlogger82125tag:blogger.com,1999:blog-587987529716680225.post-29680799404364108022020-03-28T06:16:00.001-07:002020-03-28T17:17:34.152-07:00Keeping Sane in IsolationSo about 6 years ago, I was in a hospital ward, having just waved my husband and two daughters off on their trip to England for him to be a best man and them to be flower girls at his brother’s wedding. We were not allowed to go because ‘the doctors said’, missing the biggest event of my daughters’ lives up til that point and the trip of a lifetime.<br />
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These weeks were without a doubt the most heartbreaking for me in all of Jacinta’s leukaemia treatment. Before we cue the violins, let’s just remember that her leukaemia journey was a walk in the park compared with those who had the other kinds and especially those who didn’t make it.<br />
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We did get used to isolation though. Two different kinds. There was the isolation of the hospital room. Jacinta didn’t like me to leave. She didn’t like it to the extent that she would spring a high temp, her respiratory and heart rates would soar and nobody could fix it - except Mummy. Awesome ego boost but not great for being able to leave the room during waking hours.<br />
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Accordingly, I didn’t eat except what she didn’t finish throughout the day - which was ok if she was off her food, but not ideal if she was feeling hungry. If she went to sleep before 8 I would manage to get a meal from one of the takeaway places that make actual food. If it was after 8;45 it was McDonald’s or something from the little corner store. Tinned tuna and Kingston biscuits, that sort of thing. After 10pm it would be something from the vending machine.<br />
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The TV was on whatever would keep her amused. I started bingewatching How I Met Your Mother on my laptop late at night - I’m pretty sure bingewatching wasn’t even a thing at that point.<br />
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Overall, my favourite days were the ones when my middlest came in to spend the day. Twice a week she hung out at the hospital with us. She would get bored but there were things to do here or there to break it up. That was my plan - to not become a novelty and to still be a boring mum who says ‘no’ half the time and has lame ideas for keeping you entertained. That’s where I found that creating pockets of time split up by meals and things that happen at certain times meant that you were only bored a couple of times a day.<br />
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Then there was the other kind. It was when you were well enough to go home, you just basically couldn’t go anywhere with people. Jacinta was the one in isolation, but I wasn’t allowed to leave, so by default I was too 99% of the time.<br />
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We didn’t see the inside of Chadstone for that whole year. (We did our grocery shopping there normally, so we were very much regulars) We went two places: school pickup and the park.<br />
I think we might have made one concession and gone to Easter lunch, but it was still good weather then. By the time winter hit, we were turning down invitations left right and centre.<br />
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It was actually quite lonely, and it really did bother me after a time, because yet again we’d say goodbye to the other half of the family while Jacinta and I stayed home. It felt so awfully unfair. Not to mention that my husband was studying more than full time and working from home part time as well. I couldn’t work and being in hospital is expensive. There wasn’t a lot of cash to spare - is putting it mildly.<br />
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So the reason I bring this all up now is firstly because I realised what date it is, and second that one of the things I found when chatting in the parents’ kitchen at the Children’s is that you’d generally always prefer your crappy situation to the next person’s, and they think yours is terrible and wonder how you deal with it. So I’m telling you mine, so you can feel better about yours.<br />
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Also, we have the luxury of not being bothered about isolation. Been there, done that. We’re just whipping out the old routines etc and bunkering down like we did for that two weeks when whooping cough went through school. (We did some home learning then. Ad hoc literacy and numeracy. Kept things rolling.)<br />
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We did learn some things about isolation so I thought I’d pass on to you what I learned on case it helps. I’ve numbered them so you can get your kids to count them as homework when the holidays are over.<br />
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1. Keep connected.<br />
We have the technology now. Skype, Skype, FaceTime, Skype and more Skype. We spoke as a family every day when we were separated, with the exception of the England bit. I was at the wedding, on my husband’s phone, - of course the video cut out right when my daughters were walking down the aisle...but I got a wave from the bride! I got to speak to a few loved ones at the wedding too, and there’s a photo of me talking to my husband’s Aunty. You can’t see me. She’s talking at his phone screen and I’m in the phone, but like the video of me at my uncle’s wedding in my mum’s tummy - I AM there! There’s no limit on conversations so have as many as you need - even more than you think you need.<br />
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2. Don’t think it has to be boring.<br />
So, I see people bought a lot of oats. That’s lovely, but if I’m going into isolation oats are one of the last things I’m buying up on. How many people are eating oats daily? When I thought about isolation, the first thing I thought of was chocolate. So I bought up a stash of chocolate. I then bought our regular foods with an emphasis on the plastic packaged meats that last a month just in case and I bought some treats. We’ve been having more fun foods since we all got told to stay home.<br />
The other thing I bought up on was puzzles and games for the kids. This is the perfect time for everyone to master Cleudo. And remember, you can go outside. We went to the mountains to get out of the house here and there. We’d do a home made car spotting scavenger hunt on the way there.<br />
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3. It doesn’t have to be serious<br />
When Jacinta had leukaemia there was very little uncertainty. 80% success rate, prescribed treatment plan. Tick the boxes, better. Done. There was the odd temperature here and there throwing a spanner in the works but apart from that it was planned and executed. There was no need to be serious, or freak out, or panic. Even when she got sick with paraflu and RSV at the same time and had to be on oxygen for the better part of a week (now that was never fun or straightforward - repositioning a carefully placed oxygen mask, not on her face, every time she moved overnight made for shattered sleep) we weren’t worried or panicking or serious. She definitely wasn’t serious. She usually got the giggles around 10pm. I always kept it light because as soon as the mood drops, so does the prognosis. We did RSV a coupe of times so we got used to that routine. It never got dull though. You’re allowed to laugh.<br />
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4. Love helps, a lot.<br />
When finding the funny side didn’t help, cuddles always did. When it got tough, she just needed to know that there was a safe place and a source of love to recharge from and have a quiet moment. Cuddles pretty much fixed everything. They still do. Whoever you’ve got nearby who loves you, cuddle them. If you have to be isolated from them, say all the lovely things to them over Skype - and maybe leave out the less lovely things that don’t need to be said. They can wait.<br />
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5. The rules change.<br />
During 2014 I put on several kilos because I had to prioritise my sanity over my weight with limited eating and exercise options in hospital. I made that actual decision to work it out later and let my body be whatever shape it needed. I foresee a lot of ‘post-isolation’ workout routines and diets coming ahead. Whatever.<br />
The sanity of everyone is more important than running a tight ship. The ship might be approaching the shore in a very wobbly fashion in a few months’ time. That’s fine as long as the passengers are having a good time. My girls got used to the odd day when they could watch all the TV while jumping on the couch eating a packet of biscuits. These were the days when I had not had enough sleep or was unwell and my parenting abilities were limited to making sure they didn’t starve and making sure they didn’t kill themselves doing something stupid.<br />
As soon as they said ‘Can we watch Frozen?’ at 9am and I said ‘yes’, they would look at me hopefully and say ‘are the rules out the window’. These became known as ‘rules out the window’ days. These are days when you move the boundaries way out with the understanding that they’ll be back in place tomorrow. Just everyone needs a day off today.<br />
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6. Splurge.<br />
I started finding ways to make isolation life nicer in some ways than normal life. We weren’t super flush, so I’d buy little inexpensive things that I normally wouldn’t. I discovered Wish.com - the home of some eye-boggling outfits and crazily inexpensive nick nacks and little toys. I had these coming from time to time and they would just arrive and the girls would get to see what they were and see if they were good or rubbish. If I couldn’t afford to buy yummy things I would bake yummy things.<br />
This is one of things I’ve enjoyed doing this week which is buying little treats. We had cakes from the cafe which has now closed, last week. This week I bought flowers for the house for no reason, ice cream from the local Cold Rock for no reason. Things are not super tight for us yet so I figure we have a responsibility to spend where there are small local businesses needing support. These things make isolation more fun.<br />
There are many ways you can splurge. Splurge on love and hugs. Share twice as many funny things on Facebook. Ring your mum or someone you love more often than you normally would. Call the people you haven’t seen in 10 years. Go on YouTube and see what crafty things people are doing and find the ones you can feasibly do at home. Actually make the Frame It thing from Mr Maker. You can be as decadent as you like with the good things in life. The best things actually cost nothing.<br />
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7. Look for the bright side<br />
It was during one of these periods of isolation that I started Good News Friday on my Facebook page because I felt surrounded by doom and gloom. The principle is simple. You find the bright side to your week. Sometimes it’s hidden way down there, but with a bit of looking you can find it. Sometimes it’s up there singing from the rooftops.<br />
Looking for the bright side gets you through anything.<br />
I’m not saying it’s easy, but the more you do it the easier it is to do. The more you do it the less stressed you feel about the hard things. It takes the edge off.<br />
Now that I think of it, I think I actually had that final scene from Life of Brian on loop in my head during the tricky times. It’s a catchy tune, no doubt about it.<br />
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<a href="https://www.youtube.com/watch?v=SJUhlRoBL8M">https://www.youtube.com/watch?v=SJUhlRoBL8M</a><br />
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So we’re all navigating this new thing which is isolating together. It’s a new fun way to isolate for us. Everyone else is doing it too, so they don’t get offended when you aren’t coming because they’re not even inviting anyone anyway. Everything’s cancelled, for everybody. Just about everyone has a new money issue to one degree or another and I have to say I’m not worried about the prospect of it anywhere near as much as I was when we were the only ones in that boat. There’s no shame in losing your job or taking a pay cut right now, when so many others are in the same situation. This time will pass and we’ll get there.<br />
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I wish you all a rollicking time in isolation. Done properly everyone should be saying ‘Oh, is isolation over? I was enjoying that!’ I hope we all start lovely new togetherness rituals that persist long beyond this isolation. And remember why we’re doing this, it’s to keep the hospital beds free for those who need them, many of whom live life like this most of the time.<br />
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Thank you for doing your part.<br />
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And the main thing to remember is that life doesn’t have to be completely different. My a capella quartet came into the hospital and we kept rehearsing. I had been asked to sing at the wedding so I asked my husband’s other brother to come in to the hospital and record me doing a version I created of the song, as a substitute for me being there. These examples can’t be recreated because of distance, but the point was that we got creative about how to keep going. Maybe your book club can video call. My friends from school are talking about grabbing a wine and conference calling one night from our lounge rooms. Easter will be different, but my family are Skyping that one. You can still have your birthday, it;s just a new challenge about how you’re going to do it.<br />
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Life goes on. It’ s up to you how it goes!<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-51083441570663424692020-03-13T17:00:00.000-07:002020-03-14T01:42:11.613-07:00Happy March!<br />
Well, it seems I owe you two birthday posts and a whole lot of updates!<br />
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It’s definitely time we caught up. </div>
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So where do I begin?</div>
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I think I’ll just show you the album and talk as we go...</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik8kZPoO1Nuqadsial-6qK3DWKtboACUnsNQrcRA9s2dYwNcoprpia6Umo2kSmkbo3yT7WlscfWOabQ5F-NlguLkffrBMAFS6wCcLtZgivU6TDZhwSoHHw7AEeV2xP340KY4vgZxYW_iA/s1600/EB4EA7D8-0D13-4463-B169-A8DDCC9F1EDF.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik8kZPoO1Nuqadsial-6qK3DWKtboACUnsNQrcRA9s2dYwNcoprpia6Umo2kSmkbo3yT7WlscfWOabQ5F-NlguLkffrBMAFS6wCcLtZgivU6TDZhwSoHHw7AEeV2xP340KY4vgZxYW_iA/s320/EB4EA7D8-0D13-4463-B169-A8DDCC9F1EDF.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So this is when Jacinta started school last year in January. She goes to a mainstream school and is in a regular class with funding for aides 75% of the time. The school funds the other 25% while she gets toileting sorted and until she stops running off. These things are improving all the time. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is when she graduated from Kindergarten in December 2018.(That’s preschool here.) </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is when something hilarious was going on. Hilarious things are often going on. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is after her tonsil, adenoid & grommet surgery in late 2019. Note correct use of cutlery. <br />
We love correct use of cutlery!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">This is yesterday. Wobbly tooth. Number 6 I think... <br />
(3rd child, not paying attention)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Still hilarious</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEZcvAZdosHpAH952ArZrNhbU2YbDWFcpz3QB4XXARSVmW0iQjcMHvrWul0LVjMiwNAYkC3qEZCKf3og-kOTkLgUrQD39nv1YpkI1eGzvtMcY0Ldd2ns4_zgMtSBaOMv5-HJufxQ5ri8Y/s1600/B11B6938-455D-4804-9ECF-BD0AA41FCA80.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEZcvAZdosHpAH952ArZrNhbU2YbDWFcpz3QB4XXARSVmW0iQjcMHvrWul0LVjMiwNAYkC3qEZCKf3og-kOTkLgUrQD39nv1YpkI1eGzvtMcY0Ldd2ns4_zgMtSBaOMv5-HJufxQ5ri8Y/s320/B11B6938-455D-4804-9ECF-BD0AA41FCA80.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trip to Sydney last July took us to Mme Tussaud’s. J did loads of these photos. Loved it.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4TpjjI6_VAge_4uY0y6aaiIL17X8wAB1wutfMiAkUIuc1XMwxRRvUq9VqHRRpTlGYpDwwnRQTDhWWvfpFwkbCGAAKCJd0MdN8sNKh-xHE8MRhEhRg4Tgx-sfZ6hK6WbQbGsu4aQu0JlY/s1600/B59E1764-70FC-42A1-B736-425AB1A8678E.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi4TpjjI6_VAge_4uY0y6aaiIL17X8wAB1wutfMiAkUIuc1XMwxRRvUq9VqHRRpTlGYpDwwnRQTDhWWvfpFwkbCGAAKCJd0MdN8sNKh-xHE8MRhEhRg4Tgx-sfZ6hK6WbQbGsu4aQu0JlY/s320/B59E1764-70FC-42A1-B736-425AB1A8678E.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First ballet concert! October 2018.<br />
Jacinta has a love-hate relationship with ballet. As speech improves we’re continuing to troubleshoot being part of the group and joining in, despite the enthusiasm we have right up until entering the room. I’m pretty certain it will be ‘that was because the room was too cold’ or something daft like that when we talk about it in 5 years’ time. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR29c4DVI_xt6_wGIwGefuGu83N4KtBWvvHY2O5IOA3FxyofbxYpdBOXFktCP8VIhCTpSxd5uyNDs_wqNwFup-aEbevAi6T-rozf1ov7NE0nnlzhvsdJbP1y9W-GUy5JcuT20xMbD1tig/s1600/D4CED097-1791-4143-9018-1A153A408D3D.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1334" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjR29c4DVI_xt6_wGIwGefuGu83N4KtBWvvHY2O5IOA3FxyofbxYpdBOXFktCP8VIhCTpSxd5uyNDs_wqNwFup-aEbevAi6T-rozf1ov7NE0nnlzhvsdJbP1y9W-GUy5JcuT20xMbD1tig/s320/D4CED097-1791-4143-9018-1A153A408D3D.jpeg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">7th Birthday! After a lovely birthday play date with her best kinder friend Millie. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEFR0YQO4jKhcofRLuEpvPpWVz4i3odeXf4Rl-DitXp_mTYuG29m_hWwfveeCAkyfacVcSBrTAwbOajgZz0TqRePXGTY8kVyyFSaWXOLBNvnK9vtOBmMFYS2dBGXazG4TkK8yOxbPUlwM/s1600/E44AF30F-8597-42F4-8C6E-A9F7CEC1219E.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEFR0YQO4jKhcofRLuEpvPpWVz4i3odeXf4Rl-DitXp_mTYuG29m_hWwfveeCAkyfacVcSBrTAwbOajgZz0TqRePXGTY8kVyyFSaWXOLBNvnK9vtOBmMFYS2dBGXazG4TkK8yOxbPUlwM/s320/E44AF30F-8597-42F4-8C6E-A9F7CEC1219E.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First excursion in 2018. This was a trip to The Very Hungry Caterpillar stage show and we went on the bus, <br />
which was a big adventure.</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/AVvXsEhJGsbihb3FyrETSQ3OIzFLlFAOh-eRlJRwwUdopShOAvHDG9FYpLDc3eQACevjQPzQLgO9lpA5_TFZ_m_pQnsfUtS9sTj135Ifdii4WA1WfhbssJWK4xPV9bRfJja9CpgyPObNZwiqeQ0/s1600/F767DC8A-939F-4355-AA94-274A71335052.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJGsbihb3FyrETSQ3OIzFLlFAOh-eRlJRwwUdopShOAvHDG9FYpLDc3eQACevjQPzQLgO9lpA5_TFZ_m_pQnsfUtS9sTj135Ifdii4WA1WfhbssJWK4xPV9bRfJja9CpgyPObNZwiqeQ0/s320/F767DC8A-939F-4355-AA94-274A71335052.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In Sydney at the tower they used to call Centrepoint. Note the doggy backpack with a leash - I swore I wouldn’t go there, but we didn’t bring the pram to Sydney and I just couldn’t carry her everywhere. Honesty though, it has been a useful tool in discipline with regard to running off. I figure I’d get much more dirty looks if I let her run on the road and get squashed than I do having her on the doggy backpack. Whatever. </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/AVvXsEiHRgt9e8KaVmbgws0cKTXXduD5rHxNPMrGxIupn1C_3QAtavZuH3MSEEz6qTWJ8iD-dkfuMRaf7-O1aujiwOFjhj7VImAg-XskmH8H7nZxhp0E2P3jVkK3ZQBd7kYEOrH3Pm7SYMZlxnY/s1600/F4815B99-89CC-408D-9F8D-D3235D085594.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHRgt9e8KaVmbgws0cKTXXduD5rHxNPMrGxIupn1C_3QAtavZuH3MSEEz6qTWJ8iD-dkfuMRaf7-O1aujiwOFjhj7VImAg-XskmH8H7nZxhp0E2P3jVkK3ZQBd7kYEOrH3Pm7SYMZlxnY/s320/F4815B99-89CC-408D-9F8D-D3235D085594.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jacinta was a flower girl for her Aunty and Uncle’s wedding in November 2018. That was loads of fun. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL1Gzr2Ih8TYfQuH5JaK9dRnjmDb85ZvOR-BpYGEnpPWeP7zkFwO1stN6f1Zhxi7zjkDyTTObl0ygPO3yZ8e1To4-iCg1Ln13-hi_akn2UulVM9phOiVzhRR7xrHs4z_Cpvx4YsDSMWg4/s1600/FDC7B990-9AF5-4B88-953C-9CD2352FDFCA.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL1Gzr2Ih8TYfQuH5JaK9dRnjmDb85ZvOR-BpYGEnpPWeP7zkFwO1stN6f1Zhxi7zjkDyTTObl0ygPO3yZ8e1To4-iCg1Ln13-hi_akn2UulVM9phOiVzhRR7xrHs4z_Cpvx4YsDSMWg4/s320/FDC7B990-9AF5-4B88-953C-9CD2352FDFCA.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Someone will be blogging soon! This was from last year. </td></tr>
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We’ve had so many milestones. Lost teeth, dry days at school, 100 days of school, whole year at school, student of the week, birthdays etc.<br />
First haircut....<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4u26fIwblloKzHL18l19TKz2TPpr9OFkgTuzmpi-IMbu6iNYV0U3C6AQLwvXCvbYiuSTGnwgP_hm3ptlwseFZ5Jxm4-TUNshxX7HbBmem2yD1rtKmZWLQNs4m8cpTn8_uGIFe_qOfrM/s1600/4C8A623E-04BF-4CEE-B375-4D8F39F9DAA0.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf4u26fIwblloKzHL18l19TKz2TPpr9OFkgTuzmpi-IMbu6iNYV0U3C6AQLwvXCvbYiuSTGnwgP_hm3ptlwseFZ5Jxm4-TUNshxX7HbBmem2yD1rtKmZWLQNs4m8cpTn8_uGIFe_qOfrM/s320/4C8A623E-04BF-4CEE-B375-4D8F39F9DAA0.jpeg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the after shot.<br />
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School has been an interesting learning curve for everyone involved. He prep teacher was pleasantly surprised when she smashed most of the goals of her 6-month individual learning plan. We obviously know she’s intelligent but had no idea how learning in a noisy fast-paced group environment would go. She’s going along ok. She’s learned all her golden, red and nearly blue reading words (wizard words, google if necessary) so she can read basic readers pretty easily. I predict she’ll be reading this blog in a couple of years. Might have to go back and review what I’ve written.....</div>
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Maths is an interesting challenge, being a very abstract subject. We don’t talk about abstract much since it relies on more developed communication than we have got here. Thankfully the talking is coming along since the grommet surgery. </div>
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Therapy has taken a backseat since I went back to full-time work. I have to work out getting her there, but might get the therapists to come to us instead. Life is very, very busy. </div>
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So right now, it’s very like having a NT school child, but also having a 2-3 year old in some regards. I suppose that it’s like having two children and will be until those skills are learned. As with all children, my job is to do myself out of a job. We’re definitely working on it! Jacinta included. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Ul9NJCZIz2WGoNsMEOfBE6w-p71KPeBCIlrBLKKt4Y1gJ6GOep240pq-vSLWGs8kkvXUjVMHySMD7fuXkiOEzzC_u8FjYf4gCIxvIYHdLJWzKMKTbwiHLkLi6jOUHN99g96GQDoZtpk/s1600/BBD69FFF-80B5-4607-810C-79C8D4F5BD3A.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1334" data-original-width="750" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Ul9NJCZIz2WGoNsMEOfBE6w-p71KPeBCIlrBLKKt4Y1gJ6GOep240pq-vSLWGs8kkvXUjVMHySMD7fuXkiOEzzC_u8FjYf4gCIxvIYHdLJWzKMKTbwiHLkLi6jOUHN99g96GQDoZtpk/s320/BBD69FFF-80B5-4607-810C-79C8D4F5BD3A.jpeg" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Throwback for cuteness!<br />
This was 2014 during leukaemia.<br />
Glad that’s over!</td></tr>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-3372653162607448252018-03-20T05:21:00.001-07:002018-03-20T05:21:24.942-07:005 years young!Seriously, 5?!<br />
<br />
I remember being at the bedside of my little baby Jacinta and hearing the words 'Down syndrome' and mentally writing off the next 6 years.<br />
<br />
I thought it was all going to be lots of hard work.<br />
<br />
Now, honestly, I probably could have been working harder than I have and Jacinta would probably have been talking and reading by now, possibly swimming and running races - or maybe not. Who knows? I may have completely burnt out and she'd then have no functioning mother at all, and no reading etc. What's the hold up on that alternate reality portal I ordered?<br />
<br />
So this year has been a year of unsurpassed progress and development. Jacinta has grown into clothes with a 5 on the tag rather than a 3, since last birthday. She has learned her alphabet. It comes and goes a bit so we need to be consistent with repetition, probably a bit more than for her sisters.<br />
She has a huge number of spoken words and can understand everything we say if she's paying attention. She can respond to questions re her preference with a colour or a key word like 'bus' or 'chair'. She can sing 'We Wish You a Merry Christmas' with a few of the actual lyrics and most of the hand actions plus the tune.<br />
She can see a spider in the bath and run away screaming 'aargh, spider!'.<br />
She can answer the question, "what's your name?" and is working on the answer to "how old are you?". She can count to five. (Sometimes the numbers change around a bit. Again, repetition!)<br />
She will read a book with me and sometimes asks 'what does that say?' about the words in front of her. I LOVE that she wants to learn, because a child without curiosity never will learn.<br />
She can dob, by name. Totally ready for 4yo kinder!<br />
<br />
Still the key thing we're working on is speech, even though her words have multiplied enormously this year, and I think we've passed the tipping point where full language acquisition is inevitable. Still, she could have words clearer and she needs prepositions and to fully acquire the concept of time - like tomorrow and yesterday, before and after. I think her speech is somewhere around the average 2-2.5 year-old level. (Or, 18 months for her talkative sisters!) Her 2yo birthday twin cousin has about the same or slightly higher level of language I think.<br />
<br />
We did have a lovely moment at the shops this week though. We have a little tradition in this house, which is that each child goes out a few days before their birthday and buys a new outfit to wear on their birthday, just because you can!<br />
<br />
I took Jacinta out to find such an outfit and we went into a shop which sells appropriately sparkly and fluffy dresses and shoes. On entering, the shop assistant greeted us, at which Jacinta walked up to her and said something very lengthy with one word I could make out at the end, "dress". The shop assistant then asked her what her favourite colour was, and then said to me "did she say 'yellow'?". I said 'probably' and Jacinta said that she did indeed. She showed Jacinta to the yellow dress they had in stock, which she liked, then of course we had a look at the sparkly, fluffy ones, which she liked even more.<br />
<br />
The shop assistant found her some shoes, which Jacinta was enormously pleased with and requested to leave on, so we just paid for the tag!<br />
<br />
Then she said thank you and left, bag on her arm and shoes on her feet, watching her feet as she walked through the shopping centre. I've never seen her so grown up! She has never looked so five as she did that day.<br /><br />So now we have a big year ahead of us. Sort the hearing, sort the speech and see what she really knows and doesn't know. Meanwhile, find a school and get her school ready. Time to get started!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-51735876611511176682018-01-08T04:07:00.002-08:002018-01-08T04:07:52.531-08:00Where did 6 er, 9 months just go??!!So I went to write this update and I found a draft named "July already?" - uh, yep.<br />
<br />
And then it was October.<br />
<br />
So last you heard it was March and we had started kinder. We're well used to kinder now.<br />
Since May Jacinta has been attending short-day child care two mornings a week as well. This is in a small room of up to 15 kids of mixed ages. It's perfect for her, because her abilities are of mixed ages. She fits right in!<br />
I drop her off, she waves me off, gets stuck into it and then leaves giggling and laughing.<br />
It's been very good for her speech. We've also started her at speech pathology sessions. The place we go to is fabulous. They build a relationship before they even start, then they go to a gym room and play basically whatever she wants to, building language as they go. Our goal is to have enough language to really interact with the 4yo kinder kids next year. I think we're on track.<br />
<br />
Her language is improving so fast, we're now at a point where she and I can have a small conversation, back and forth a few times, and she will put three concepts together - oh, right, ok mum etc. She routinely orders her sisters around, 'come on Yaya, now!' or orders me around, 'Mum, sit down!'. Her language is of course much more varied at home than it is out and about, but she's 4. My children wouldn't say 'boo' to anyone in a foreign environment at 4. They'd come and whisper to me, maybe.<br />
<br />
It's interesting to see how she goes in different places. It seems she feels more comfortable at child care than at kinder. I wonder if it's because they also focus on building a relationship with one carer above the others, according to who the child gravitates to naturally. It might also be because she isn't obviously different in terms of ability.<br />
<br />
Anyway, what can she do?<br />
Let's see.<br />
<br />
She is very helpful around the house. She will empty the dishwasher for me, putting all the crockery and cutlery away in the right places.<br />
She can walk some long distances now, and I can get away without the pram sometimes, if she's not tired.<br />
<br />
Recently I had to go to the supermarket with her and I couldn't bear the running around that so often happens with little kids, so when she asked me if we could buy chips, I said that if she stayed with me, right by my side and didn't run off at all, we could buy chips. She totally did it. From go to woah, from the moment we stepped into the shop, she held my hand and didn't run off, was totally grown up, asked every couple of minutes again about chips - and I reiterated that we'd get them at the end if she kept holding on and staying with me, and she did it. That was such a win!!<br />
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We've made inroads with toileting too. I had tried to get her trained earlier in the year but we had issues with the actual toilet as opposed to the potty, and they don't have potties at child care or kinder. Then a couple of months ago she started telling me she wanted to go. I sweetened the deal by letting her watch a toileting video on my phone, but then I got too comfortable and left her with it while I went and did something - and came back to find it IN the toilet. One new phone later and she's not allowed to touch it, so the interest has wained....need a new incentive. But we're getting there!<br />
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She knows most of the words to Let It Go - it had to happen, I guess.<br />
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She can put on clothes - most of them. She is a prolific painter.<br />
She can turn on the TV and put a DVD on.<br />
She can draw a circle and put eyes and a line in it and it's called 'Daddy'.<br />
She sometimes goes to sleep in a big girls' bed - and has told me she wants a proper bed, not a cot.<br />
<br />
The thing I find most exciting right now is that she seems to have taught herself the alphabet.<br />
We were sitting on the couch and she was on Daddy's lap, and casually named every one of the letters on his SOCCEROOS top. <br />
All that time letting her use my phone (not on the toilet) has not been a waste it seems.... (Starfall.com app is brilliant!)<br />
She can now name - by name, by phonetic sound, or both - every letter of the alphabet. She can pair the lower case letter with its upper case equivalent. Not too bad for 4 with a year off sick!<br />
I recently found the magnetic fridge letters I've been keeping on top of the fridge for the past couple of years and gave them to her. She loves them!! Now we're in alphabet overload because one thing I know is that the more you do the thing you can do, the easier it is to move on to the next thing.<br />
<br />
And what next? Swimming is the next thing. We'll see how that goes.<br />
Getting ready for 4yo kinder, which is two full (longer than school) days a week.<br />
(More free time for Mummy....)<br />
Maybe possible sleep apnoea - still waiting on the appointment for that one.<br />
Then seeing if we think another surgery is the right option. I'm really hating the thought of more surgery for something that's not life or death, especially when she's well old enough to resent us for it and maybe not appreciate the difference it makes. We're now up to really assessing how much something will benefit her - in her estimation as well as ours. She is alert and paying attention. If I say something she is interested in and she doesn't get it, she'll ask me to repeat myself or get a further explanation - and then I'll get an 'oh, right'. She cares. The stakes are higher. We'll see.<br />
<br />
But for now, the weather is warmer. Dresses and skirts are the flavour of the month. Swimming is one of her favourite pastimes. She's looking forward to her birthday, and would like a party at the pools, not the hobby farm. (We might have to negotiate on the pools, for 4 year-olds!) And we see whether she'll learn to read fluently or talk fluently first!!<br />
<br />
And then it was January!!!<br />
<br />
Birthday post coming up!!!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-26553943347970615722017-03-20T17:17:00.001-07:002017-03-20T17:17:23.256-07:0021st of Trisomy 2017Golly! It's our fifth 21st of Trisomy with Jacinta in the family.<br />
<br />
I find it amusing that my attitude to the whole business changes with each passing year, as my perspective changes.<br />
<br />
The first year I didn't even know it was on and the next year she had leukaemia, so I didn't care. Then the next year I blogged early, then I think last year I actually blogged on time! So here I am, theoretically blogging on time, though it's still early in the day and anything might happen between here and the next paragraph to throw me off course until tomorrow.<br />
<br />
So instead of waxing lyrical about some very important and serious topic, which I actually started to do and then deleted the whole thing, I'm going to share my favourite two videos which were made just for today.<br />
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<a href="https://www.youtube.com/watch?v=o0VV3C_ydak">https://www.youtube.com/watch?v=o0VV3C_ydak</a><br />
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This one features teens with T21 showing you, graphically, what exactly a Trisomy of the 21st chromosome is. Highly enjoyable and informative, if slightly disturbing.<br />
<a href="https://www.blogger.com/goog_673815262"><br /></a>
<a href="https://www.youtube.com/watch?v=kNMJaXuFuWQ">https://www.youtube.com/watch?v=kNMJaXuFuWQ</a><br />
<br />
And this one is the super cool video that just cannot be explained. Not so much informative as hilarious.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-48182020802429611782017-03-13T07:01:00.001-07:002017-03-13T07:01:06.392-07:00So, how's kinder going?Now that's a question!<br />
<br />
It finally arrived. The day was finally here. Jacinta was starting kinder/preschooll!<br />
<br />
Up until the day before she would answer 'yes' to being excited about it. The night before, we started to get some shaking of the head, some 'nooo', and on the morning itself, she was slightly inconsolable. (Because, no, inconsolable is not an absolute....)<br />
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The subject of kinder was banned, by an emphatic 'no' and a face palm any time it was mentioned - by anyone, all day - which is a tricky situation when everyone you see knows it was your first day and wants to know how it went!<br />
<br />
I really did want to get that shot of the kinder kid with her bag on, leaving house - or entering kinder, hell, even leaving kinder - anything! She pretty much refused to touch her bag the entire time. There was one moment when her hands did make contact with it, when she put it in her locker. It was such a quick moment, I got this photo....<br />
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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/AVvXsEgUUI31x9uxSdIe_u0Qp-Pop8ctccjyOTXVJOvwJUfp3OgcwWHd0cPvb_mvY4nM6CjGRYV8R5iRGJ-h5Ci5EHw6YAFKn68JXBqSklSAnwuTpQ8M4FUG5uAhW7gZT0AB8vH2dDwZpeBm2us/s1600/IMG_4864.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgUUI31x9uxSdIe_u0Qp-Pop8ctccjyOTXVJOvwJUfp3OgcwWHd0cPvb_mvY4nM6CjGRYV8R5iRGJ-h5Ci5EHw6YAFKn68JXBqSklSAnwuTpQ8M4FUG5uAhW7gZT0AB8vH2dDwZpeBm2us/s320/IMG_4864.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All done!<br /><br /></td></tr>
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So from then it was fine. She washed her hands, went to the painting easels, put on a smock, did her first masterpiece, then happily said goodbye to me.<br />
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Unfortunately about half a dozen other kids were all going off at once, crying inconsolably (an absolute, in this instance), so when she had the wavering bottom lip as I neared the door, she lost it. I waved her goodbye through the window, as I had done with my middlest, but it didn't do the trick.<br />
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An hour later when I was having coffee with another mum whose son was also there, I noticed I had just missed a call asking me to come back because she'd been crying the whole time. I called straight back only to be told she'd now cried herself to sleep (awesome) so we decided I'd wait on call and see how it went. It was only another hour til pickup.<br />
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When I arrived back she was still in the arms of an educator but not crying, so that was something.<br />
Here is she ready to leave.....<br />
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<tr><td class="tr-caption" style="text-align: center;">AKA running for the door....<br /></td></tr>
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The next couple of weeks were less upsetting each time. She was still upset at me leaving, but got used to it more and more quickly.<br />
Then the next week the educators decided to begin the day outside - and everything changed!<br />
Straight out, hat on, 'bye Mum', no tears, and off I went. Two weeks of that and it appears we're all settled in. Time will only tell.<br />
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So she's loving the arts and crafts and the home corner. No surprises there. By all reports she is doing what all the other kids do - most of the time. She has been caught trying to let herself outside to the playground once or twice (no surprises there either), but has come back to the group without much fuss. She knows the routine, comes in, puts her lunchbox and drink bottle on the trolley, puts her bag in her locker (I was impressed that she remembered the number and/or the picture on hers without any prompting), uses the toilet, washes her hands and off she goes. At the end of the day she goes off and gets her bag - and anything that's fallen out of it - and brings it back to me which helps reduce the crowd around the bags.<br />
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And with friendships, I guess we'll see. Only a few of the kids are actually talking to each other from what I've seen so far, so we'll see how it all goes.<br />
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And, you'll be pleased to know, I did get that picture - eventually!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-61513861086562174182017-01-26T06:43:00.000-08:002017-01-26T06:51:33.131-08:004!!Where did that go??<br />
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I swear it was not four years ago that I sat in a wheelchair in the special care nursery and heard the words 'facial features consistent with Down syndrome' - and wrote off the next 6 years of my life.<br />
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<tr><td class="tr-caption" style="text-align: center;">Honestly, I don't think I shared any photos like this at the time - too 'clinical features'! </td></tr>
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What I thought was that I was putting life as I knew it aside, settling for a tough life of hard work and no fun, for at least the next while.<br />
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Because, let's be real. If there was a magic pill that would undo the effects of the Trisomy on Chromosome 21 (and it was completely without side effects) we'd grab it, no questions. As far as we're concerned, if Jacinta had a body that worked properly it would be much easier for her true self to shine through, without being hampered by difficulties all the time, which from all appearances is incredibly frustrating. (There's a lot of screaming going on lately. It'll pass....)<br />
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So looking back on the past four years, I can see that it's been completely different to what I expected. The first 9 months or so were fairly predictable - it was rough trying to get her fed for the first 3-4 months before the heart surgery and it was hard to live with myself, putting her through it - no matter how much it's for her own good.<br />
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Still, those first 9 months were miles better than I expected. I remember when she was going off to hospital without me, waving her little hand, I had high expectations for her. Then when I first saw her in the new hospital the next day, she was in a fog. She was all floppy and sort of bloated, and barely conscious. I really couldn't see who she was, which made it difficult to relate to her. I was expecting a hard slog.<br />
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I remember being so pleased during that first week when the Intensive Care nurse who'd been looking after her mentioned that she'd been hiccuping quite a lot, and I was able to say "Yes, she does that a lot." because she'd been doing it all the time in utero. I think that was the first time, during those first few days when the nurses had spent more time with her than I had and knew her better than me, that I really felt like we did know each other and we did belong together.<br />
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Then it was a few days later when Maria came to do NAET with Jacinta in the hospital and after a couple of treatments, it was like the lights switched on and she was open for business. At that point I could see she had a sense of humour, which is really all I require in a child of mine - that and a good capacity for conversation.<br />
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And now we're here! Where on earth did those four years go??!!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjo96WAgB2yQLs4y4WqKh4O3H4jRJphLOKa8oQMGME414OO9tRNC7_T1Ne-384ywPEYcxQKu5P4iJscaLk6P01xxwTYer7RYG_dMCf_ojN0AXhjMo0KI4Qe-0lA926qT5uftJoQpCYuKxo/s1600/IMG_4533.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/AVvXsEjo96WAgB2yQLs4y4WqKh4O3H4jRJphLOKa8oQMGME414OO9tRNC7_T1Ne-384ywPEYcxQKu5P4iJscaLk6P01xxwTYer7RYG_dMCf_ojN0AXhjMo0KI4Qe-0lA926qT5uftJoQpCYuKxo/s320/IMG_4533.jpg" width="240" /></a><br />
So Miss Jacinta is now about 88cm tall and around 16kg (metric system) and is walking and doing the trotting run that toddlers do. For her birthday she got a balance bike. She has a love-hate relationship with said bike, which is awfully cool and exciting, but seems to buck her off when she's wearing a voluminous dress or no shoes. Work in progress.<br />
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This has been a very exciting Christmas. Not only did she choose presents for her siblings and parents (as she always does), but she was able to say who they were for - because she can say all of our names now! My middlest and eldest shall henceforth be known as 'Yaya' and "Eneminee". Not only that, she hid them in her room, wrapped them with a little help (sticky tape) from me when no-one else was looking, put them under the tree herself and - left all the presents alone!!! I couldn't quite believe it but for the first time in many years in our house all the presents sat under the tree for several days and not one was cracked open even a tiny bit!<br />
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Her speech is taking off again - possibly due to the hearing device, although she's not wearing it as much as we'd like since it's been a bit problematic with feedback and less effective when turned down. I'm now noticing that the burbling utterances she makes at appropriate times more and more sound like appropriate phrases - and when I get them right (such as this afternoon at the supermarket when she pointed to a favoured grocery item and said "put that one in" i.e. in the trolley) she beams and nods her head and says an emphatic "yes" - with an 's' and everything!<br />
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Another milestone - she's worked out how to take photos with my phone. We're now into the 'taking photos of my shoes and bits of Mummy' phase. Her first photo was of the Clown Doctors at the hospital, who highly enjoyed posing for her shots - possibly straining their backs in the process of getting their heads in the frame.<br />
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Jacinta is very aware of where she fits in. She wants to be included and most of the time if she's crying in the house suddenly it'll be with her face in her hands, weeping because she's been told she can't play with the older sisters. It's quite a frustration for me to see that since my middlest started school the age gap between her and Jacinta has widened so much, when there's actually a bigger age gap between 1-2 than between 2-3. Frustrating also when one thing I really don't want Jacinta to get used to is exclusion and feeling different. I know it'll come up in the future, but I do like to think that the one place you'll always feel you belong is at home, and being always stuck with your parents is nobody's idea of fun. Anyway, I look forward to getting that crystal ball so I can see how it'll all play out.<br />
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Almost every day she's doing something new that we didn't know she could do. The other night her older sister and younger cousin put on an impromptu acrobatics show and she jumped up and joined in with a couple of moves we've never seen her do before - and which are really good for her physical development, so woohoo!<br />
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She sings a variety of songs now, including the Peppa Pig theme tune (snorts included) and the song "Apples and Bananas" which just so happens to be the name of one of her Wiggles DVDs...... (very convenient)<br />
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I think my favourite thing I've seen her do lately was on her birthday. Up until this year she hasn't had the puff to blow. Before her recent heart op she had started blowing bubbles in drinks with a straw (and getting in trouble for it) and I'm pretty sure that since the operation she's had more puff than before.<br />
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With all my kids who haven't blown out candles before I have done a dry run with a sing of Happy Birthday and then cue them to blow so they know what to do. Every year until now she's not had enough air to get them out, but this year a couple of days before her birthday I did it and she blew the candle out straight away, with no hesitation or difficulty.<br />
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It was so sweet to see her blow the candles out this year, not only because she could actually do it and tick off another milestone, but because she took each candle individually and blew.....each.....one ....out, very very carefully. Thank goodness she only turned four!<br />
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It really is amazing to watch Jacinta go about her business. She's still determined to do everything herself, or at least attempt it before getting help. Woe betide anyone who tries to treat her like a baby!<br />
She is very good at estimating danger at certain times - carparks excluded.... She loves opening and shutting the car door, the house door, the bathroom door etc and it amazes me that no matter how quickly she does it (and I freak out slightly on the inside expecting broken fingers), she is actually really careful to ensure her fingers are out of danger each time. I don't know why I expect her to be sloppy and careless - perhaps unaware - but it's in there, and she surprises me often by being very sensible. Maybe it's because she's still so cuuuute!<br />
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<tr><td class="tr-caption" style="text-align: center;">This is a really unusual sight these days.</td></tr>
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And in a few short weeks she starts kinder. She's going in with the 3 year-olds who will start turning four this year. This means she'll start school at six, all going well, which is perfect. She's so ready to get out and make more friends and it's high time she did.<br />
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See you in a couple of weeks!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-68600195228067499392016-12-19T04:23:00.001-08:002016-12-19T04:26:41.049-08:00Vale Jules WatsonSometimes I feel compelled to write a reactionary post. Usually these are for venting purposes.<br />
Once or twice, I've felt compelled to write about a loss, and this is one of those times.<br />
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Back in early 2015 a friend of mine shared a blog post, from Five Fairies and a Fella <a href="http://fivefairiesandafella.com/">http://fivefairiesandafella.com</a><br />
I don't remember exactly which post it was, but from Jules' turn of phrase and her absolute spunky fighting attitude, I was instantly in her corner on her fight to live, when all stats said she wouldn't.<br />
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Jules and I have a few things in common, though my fairies are younger and one fewer, we each have a youngest with a Trisomy. A mother by occupation, who had something to say, with words as her instrument and who wasn't backing down from the idea that she would just survive, even if it was not supposed to be possible.<br />
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What I loved most about Jules is that from all I have read it appears that she was very much in the same place I am just a couple of years ago, yet she decided at one point not to be scared anymore. She decided on what was important to her and began, by ticking off items on her bucket list I suppose, to actually live her life the way she had always wanted to.<br />
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She obviously began blogging, she threw herself into her writing, finished her tertiary studies. By the time I had been following her a year, she had beaten the odds several times, not died at least once, and published a book - travelling the country to promote it. (It was such a pleasure to brighten her day during one rough moment by sharing a picture of her book on display at my local library.)<br />
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Of all the people I have met on Facebook and never met in real life, she is the one who will stay with me, because she left an indelible mark on me. She could have been me, and when you have so much in common with someone you feel what happens to them in such a real way.<br />
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Because of Jules I will be working on creating memories for my children while I am fit and well.<br />
Because of Jules I will write down my thoughts for my daughters while I think them.<br />
Because of Jules I will grant importance to my own dreams and goals and start living the life I actually want to live.<br />
Because of Jules I will not let something go if I sense there is something not right with my body, but I will get it checked, because not being around for my children is a much scarier thought than any diagnosis might be.<br />
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I am sad that I never got to meet Jules. I really think we would have had a good time. <br />
I feel for her Fella and Fairies, so much. Words seem empty, when trying to convey an understanding of the emptiness that Jules' loss must have left in its wake. I send them all the love I can muster.<br />
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And so Vale Jules, you defied the odds so many times. If anyone could beat it, you could. Maybe no-one can. You grabbed life by the horns and lived that life like it was going out of style. You will be remembered. Not just by those who knew you, but by those who would have liked to, if things were different. You made a difference and you left your mark. Fare well.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-92180303369507159722016-12-19T03:49:00.002-08:002016-12-19T03:49:24.562-08:00The post-surgery update.Well, we made it to Reception J on time and managed to arrive with a fasting, but not uncomfortable Jacinta.<br />
It's always better to have sisters there before surgery because you can giggle and have fun rather than sit there worried.<br />
One good thing about having done it all before is that you have pretty good prediction on how long it will all take and when you'll be going in. The first time she had heart surgery I thought 7am meant a 7am op - or thereabouts. Ha! Not so much. More like 8.30. It's handy to know that when you have to keep kids entertained.<br />
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So we took family photo with Jacinta and me gowned up to the nines. Then I took her through. It was when we were in the theatre that she saw the warming thingy on the bed, looked around and got her bearings that it all got real.<br />
With a shake of the head that clearly said,"uh-uh" she indicated that she knows how this goes. To her credit, when I said,"yes, we have to", she settled on my lap watching Peppa Pig on my phone and let them put the gas mask on. One thing has changed, they used to flavour the gas with strawberry or chocolate topping. Now they use lip balm - grape in this instance, on the anaesthetists's recommendation.<br />
<br />
We went off to fill in the time. Apparently orange pancakes are now a thing and The Secret Life of Pets is too scary for some children. I wound up with more than one extra on my beanbag in the cinema downstairs. Water tastes good with lemon, strawberry and cucumber infusion. The surgeon called as we were finishing lunch. Now he had said he would finish sometime early afternoon. He always SAYS that, but then I either get a call saying it will be another few hours, or I don' t get a call til late afternoon, because it was tricky and it's not perfect bit it will be ok. <br />
<br />
I admit, when the phone rang at 1:26pm, I freaked out a bit. I was expecting to have to kill a few more hours, and an early phone call could not be good news.<br />
<br />
But it was! The surgeon said it was easier than expected and the result was perfect. This means that the membrane should not grow back again. For context, I have never before heard the surgeon say the word 'perfect' without the word 'not' in front of it. I think he also said the word 'pleased'. These are not words he throws around with gay abandon.<br />
<br />
She got back to ICU by about 3:30 which is the earliest ever and they started talking about waking her up that night, which never happens. This is how other people do cardiac surgery!<br />
By the time I came in the next morning she was awake enough to see me and they had 'extubated' her. (Taken out the breathing tube) She wasn't super happy about life, but hey, she had just had her chest ripped open and bones broken and wired back together. That's fair enough! I did notice however that she didn't want to be touched or looked at, which is what happened the last time she had Fentanyl. She was given it this time too.<br />
<br />
Then things happened very quickly. They said she could go to the ward that day. We were waiting, not on her recovery, but on a bed in the ward. The first thing she told me was that she was thirsty, and she drank at least a cup of cordial (you go with whatever goes down in some scenarios) in about 2 minutes. After a few hours she had come out of the Fentanyl grumps and was eating food. She scratched at her chest a lot. She pulled out her oxygen prongs. Lucky she didn't need them anymore.<br />
<br />
This was in stark contrast to her first ever surgery, where they gave her a day off and just let her rest. Both previous times she was still well under sedation at this point. Now she was up and about. We found a good spot that was comfortable, with me on the bed under her. I'm not sure how usual this is in Intensive Care, judging by the surprised and amused looks we got from passers-by and visiting doctors.<br />
<br />
We went to the ward that evening and despite her disagreement with changing spaces, she just got better. Every few hours they took things out. By the Thursday they had taken out her pacing wires and drains. This had never been done with her up and about, and it was one of the most harrowing things I've ever had to participate in. She was fasting for a very long time, because they wanted to use heavy sedation, and this meant she went in hungry and thirsty to do a thing which scared the hell out of her. Then for the rest of the afternoon while she wanted to sleep she was made (by me) to go downstairs and do a chest X-ray (because we had to).<br />
<br />
By the end of all this, we just wanted to go home. She was over being touched, she had pulled out her NG tube which meant oral meds from then on, she disliked almost everyone who came into the room. Another room change meant we were in the low maintenance section but she did not agree with changing rooms again. Thankfully a Skype call to home meant she could relax again.<br />
<br />
And then, on the Friday, they sent us home. I think I was packed before the doctors even came around. It's interesting, the more we do hospital, the less we feel the need to be there. I remember the first time she went home I was a little nervous about how safe it was for us to be looking after her so soon after surgery (two weeks). Now, I am so over the nights spent in hospital, where the nurses pretty much have to do obs overnight, which almost always results in broken sleep for everyone, that I would rather look after her four days post-surgery by myself at home.<br />
<br />
I know that she will sleep better, will feel happier, and will have the food and drink she's used to plus the Peppa Pig DVD and whatever else she feels like doing to hand. You just get better faster at home. Everyone who knows hospitals agrees that if you don't need to be in hospital, it's better not to be there. I did have some messages from friends saying 'don't rush home, make sure you rest', but the chances of rest are so much higher at home.<br />
<br />
And you can drive to the mountains at your leisure and visit the Chocolaterie and Ice Creamery.....<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-46047035605449622002016-12-19T03:49:00.001-08:002016-12-19T03:49:16.937-08:00Loooong trip to EmergencyLast Tuesday, Jacinta was recovering nicely from surgery and I was getting her dressed, when one look at her scar told me she needed to be checked in Emergency.<br />
<br />
What had been beautifully scabbed was now scab-less and weepy. It seemed the edges were moving away from each other rather than closer together. I grabbed my bag and a snack and headed out the door, attempting to arrive soon enough to be out of there and home for school pickup.<br />
<br />
Hahahahahahhahhahaaaaaaaa!<br />
<br />
Now, we've done this before, twice. Once after the first surgery when some stitches must have stayed in and got infected. They gave us antibiotics and sent us home. Once during her admission from the second surgery when the end of the wound looked at bit infected. They took her into surgery and did a debridement (where they clean out old dead or yucky tissue - ewwww).<br />
<br />
It didn't seem too bad to me so I was expecting a dose of antibiotics and to go home again. The surgeons had other ideas. They said they didn't think it was infected, but that we should stay overnight and have a look in the morning. I rearranged several meetings and a highly anticipated outing for that night. (Thankfully my eldest enjoys the ballet too...)<br />
<br />
"Ah well", we said, and upstairs we went, expecting to be sent home the next morning.<br />
<br />
The doctors came round and when they opened their mouths to say "you can go home", they must have got confused because "I think we'll take her in for a clean, if that's ok with you" came out instead. Every single person looking after us from that point had their money on us leaving that morning - maybe the surgeon was running the book!<br />
<br />
So then we were fasting, and we were due for surgery around 3pm.<br />
Now, due to issues when she had her surgery in 2015 Jacinta has a note on her file that she reacts to morphine and fentanyl. These are both opiates. Morphine does the opposite of sedate her. She's firing on all cylinders after a hit of morphine. Fentanyl makes her inconsolable, not want to be touched, scratch everywhere, pull out wires and tubes. It turns our perfect patient, very cruisy young lady into someone who is having a serious meltdown, for several hours.<br />
<br />
This is what happened in 2015. It was observed primarily by me. They apparently gave her some again in ICU this time and the reaction was less severe, but still there. I don't know whether or not they attributed her changes to the drug since they don't know her normally. I do know that when I mentioned it was the fentanyl, nobody seemed particularly interested.<br />
<br />
Anyway, when we reached the pre-op area they asked what her 'allergies' were (since she has a red name band) and when I mentioned the issue with fentanyl they said 'we'll be giving her fentanyl today' despite what I said. Sometimes there are issues with drugs that are used, where certain protocols are followed and changing them is complicated, so if they make a call that it needs to happen, I don't kick up a fuss since I'm not a fan of complicating things and inviting human error.<br />
<br />
So she went off, it all went well, and then she came back.<br />
Again, super thirsty. Wouldn't eat. Inconsolable, no hugs allowed (except from Daddy while he was there) scratching everywhere. Rubbing her eyes. Pulling at all the leads and her IV drip in her hand.<br />
<br />
In the end I had to call the nurse in and request that some of the leads be taken off, since her heart rate was up, her respiration rate was low and these were not even right because she was nowhere near still, and pulling off the leads. I think she had ripped the wires out of the sticky spots and was removing her sats probe as fast as I could put it back on. It was absolutely pointless trying to monitor this, when the stickers and probes were part of the problem.<br />
<br />
Thankfully the nurse was willing to take off as many as she could. She had to follow certain monitoring guidelines, but could see it was futile to keep everything on. I pointed out that Jacinta was seriously attempting to remove her IV. She had wanted to keep it in just in case it was needed, but made a judgement call to take it out, finding it was already half out when she did remove it.<br />
<br />
Finally, about 7pm Jacinta settled down and had something to eat. The ward doctor had been called and she agreed with the nurse that it was an allergic reaction and it wasn't safe for her to be given it. They gave her oxycodone (a cousin of morphine) and some zyrtec to help her settle and she stayed awake, exhausted but wired, until midnight. Looks like she's not a fan of opiates across the board (she's had zyrtec before).<br />
<br />
The doctor started paperwork for Jacinta's reaction to be registered on record as an adverse drug reaction, which means that if anyone tries to prescribe it (which is all totally computer generated now) the computer won't let them. I think several staff couldn't quite believe that she was given it in the first place, and it felt weird to be the one being philosophical about it all.<br />
<br />
But it's a bit of a sad fact of hospital life I suppose, one which the staff don't often see. If you as a parent observe something happening with your child, it is rare that someone will take your word for it on the first instance without either ignoring it or questioning it. I usually takes several occurrences of a phenomenon for enough staff to observe it and do something about it. That's par for the course. I was surprised that the staff were treating it so seriously, until I realised that they had seen this and it had happened to them (particularly the nurse who barely left our room) and they had feelings and opinions about it.<br />
<br />
I hear it was reported through internal channels. That was mentioned the next day when someone asked if it had been. Again, I was a little surprised it was getting so much attention, when it's no different in my mind from the time she was given a drug that should have been ceased and her BP crashed overnight and she had a MET call, or the times I queried drugs or doses being given and the nurses said 'oops, thanks for that'. It's just part of hospital life. We're a team and if I do my job and you guys do yours, we have the best outcome. Still, I appreciate the attention it was given. This is one of the premier children's hospitals in the world and they do pride themselves on doing things properly.<br />
<br />
And they asked us if we wanted to go home.<br />
<br />
We said, 'yes!'<br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-64532927941443041012016-11-27T01:52:00.002-08:002016-11-27T01:52:35.416-08:00Ramping up for MondaySo we got the call on Friday to say that the operation that was in pencil for Monday is now in pen.<br />
I wrote down the instructions, which haven't changed. I mentioned to the List Lady that I was happy to sign the consent form on Monday before she went under and was told, "Gee, youu're relaxed!" Meh, just practical.<br />
<br />
Then we had the call from the surgeon - on speakerphone with three girls who were itching to get out of the car and meet their friends at the park - explaining that he won't just go in and snip the membrane, he'll also need to dissect from both sides and widen the dodgy valve to stop the flow from making the membrane build up again. More involved but no more risky, he says.<br />
<br />
Bit of trivia: the most common side effect of cardiac surgery is infection. About 30% of cardiac surgery patients require antibiotics as part of recovery. Another major side effect is brain damage. (Awesome) Apparently this is not common, but happens from time to time. I guess when people are stopping your heart and mucking around with it there's a chance the flow might get interrupted somewhere along the line.<br />
<br />
So I decided we were going to squeeze as much fun into the next few days as we could, to make Jacinta so sick of fun she'll need a week of lying around in hospital to make up for it.<br />
<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 style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7VAekTM-pt4wNbNS0M1_ktjdZ-6i3jzi7TvUdpElptzH726liUsuktTrQcAEQFTWGbWeDVilNTWqUIA2RJwkacyTQI9RevGZzs3f1uIsQkflOWotUwZ39ZyjK2owwISn_9xTVYd8S6-4/s1600/IMG_3606.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7VAekTM-pt4wNbNS0M1_ktjdZ-6i3jzi7TvUdpElptzH726liUsuktTrQcAEQFTWGbWeDVilNTWqUIA2RJwkacyTQI9RevGZzs3f1uIsQkflOWotUwZ39ZyjK2owwISn_9xTVYd8S6-4/s320/IMG_3606.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who's ready for some FUN?<br /></td></tr>
</tbody></table>
<br />
We started with the Challenge Christmas party. Challenge are an organisation who support the families of children with cancer or blood disorders. They run many fun events throughout the year, on top of the work they do in hospital and out. The Christmas party is amazing. You go to a racecourse and it's basically a free carnival with all the trimmings including food and drink, plus Santa who gives the kids a really cool present.<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 style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCY01CwVAix9KipaGWiN9QpcaxrejIsXssm9k7xUMetZDqXq7pNCqe4tR1HlLeBLki5NUZijMrmHH896l-PJdB12fqVIT3PxdzsTqX8F7UwNcr_yxZj9MAEOdECNb7DtSiIqG4xgo4HKU/s1600/IMG_3608.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCY01CwVAix9KipaGWiN9QpcaxrejIsXssm9k7xUMetZDqXq7pNCqe4tR1HlLeBLki5NUZijMrmHH896l-PJdB12fqVIT3PxdzsTqX8F7UwNcr_yxZj9MAEOdECNb7DtSiIqG4xgo4HKU/s320/IMG_3608.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Would you believe I forgot to get a photo with Santa?<br />(To be honest, she enjoyed the slide more...)<br /></td></tr>
</tbody></table>
We were so funned-out by the end of it Jacinta flaked in the car and my husband and I pretty much flaked when we got home. We had planned to go to another festival in the evening but opted for a 'family night in' which is code for 'movie, effort-free dinner and some tasty snacks'.<br />
<br />
Today's plan was to go to the Myer Christmas windows - super early in the morning so there are no crowds. Then maybe a play centre. Then we had work to do. Presents for the dance teachers, food for the week's lunches, all the washing in the world to get done. I told the girls that this week they can have gluten (i.e. sandwiches in their lunches) because Jacinta won't be home to miss out or sneak it for herself.<br />
<br />
So what actually happened was we all slept in, had the laziest morning we've seen in months, finally got dressed and out the door by about 1pm straight to the play centre. Played for a couple of hours then realised that we'd need to be home before 5pm to get Jacinta fed, showered and into bed for the early start. Shopped for teacher presents, cancelled grocery shopping (there'll be time while she's under, let's face it) and had a quick fish n chips at the playground. Then home, shower and bed.<br />
<br />
Now it's an early night, early start, no breakfast (solidarity with the fasting sister) and straight in to the hospital. Can't quite believe it's happening to be honest, it's all been so fast.<br />
<br />
This time we'll be trialling a tag team arrangement at the hospital. Really not sure how it'll all go, but I guess we'll see. No-one but me has ever spent a night in hospital with her, but she's not breastfed anymore and it really divides the family in half when we keep reinforcing the idea that Jacinta stays with Mum and the other two go with Dad.<br />
<br />
I have my fingers crossed that the old 'pull a temp and crazy heart and resp rate when Mum leaves the room' will not apply - especially since she's been spending one day a week with Dad and her sisters while I've been studying for the past few months.<br />
<br />
And although you'd think it would get easier, with so many familiar faces and familiar lingo and routines, it doesn't. I wonder if we're at the worst stage - with Jacinta fully able to hear and understand everything we say and indicating by yes, no and emphatic facial expressions how she feels, yet not able to have a conversation about it. Knowing, at the very least, how much this is all going to hurt, and none of us able to do anything about it other than offer cuddles for comfort, especially when the necessary morphine has her bouncing off the walls.<br />
<br />
But, you do what you have to and hopefully this time it will be the last. They say there's no such thing as false hope, only false despair. (Well, I believe that is Raymond Veras' saying, actually.)<br />
I'm running with it!<br />
<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 style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9cLB46cVv6jSrWl_YyGktBQZlxcp4SvG0NC7wVrlp5nc6TPoY9bYLdo4UWMnVny_aDZDGadVhSw5lQii9RI2SmmRs6GD79E62d7SthzMeOugbHW-vIgT5QJ1gVPnjNZDlUFdxZ-jS-L4/s1600/IMG_3624.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9cLB46cVv6jSrWl_YyGktBQZlxcp4SvG0NC7wVrlp5nc6TPoY9bYLdo4UWMnVny_aDZDGadVhSw5lQii9RI2SmmRs6GD79E62d7SthzMeOugbHW-vIgT5QJ1gVPnjNZDlUFdxZ-jS-L4/s320/IMG_3624.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And there's even a rainbow...(no unicorn though)<br /></td></tr>
</tbody></table>
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-78407884461057537782016-11-21T05:30:00.000-08:002016-11-21T05:30:28.850-08:00It's all going on!Today was one of those days when you leave to drop the kids at school and don't make it home again until after you've picked them up at the end of the day.<br />
<br />
Three appointments - I'd like o say back to back, but there was a fair bit of travelling time in between them.<br />
<br />
We're all about the heart surgery right now because we're expecting a call any day to say that it's going to be tomorrow, so of course none of these appointments had anything at all to do with heart surgery.<br />
<br />
The chiropractor did some moves to help residual fluid drain out of her teeny tiny eustachian tubes because they're still chock-a-block full of fluid.<br />
<br />
The Oncologist said there's no haematological reason for her tiredness and thinks it's worth considering sleep apnoea - suggested we monitor her sats while she's in hospital after the heart. Thought about her low lymphocytes and we wondered if it's worth doing anything about immunity - such as seeing an immunologist re immunoglobulins or vaccinating which might be useless at this stage - then it all got too complicated with the high incidence of low lymphocytes in Trisomy 21 cases and the incomplete thymus, so we decided to leave it til next time, when we see our usual doctor who's back from maternity leave. Effective handball there.<br />
<br />
The nicest part of the day was at the hearing clinic. She is going to get a fabric headband which has a device inside for sending the sounds in her environment directly to the inner ear via bone conduction.<br />
The person we saw had an old device there which we tried, and Jacinta was transfixed when it was used. We couldn't leave it there, so had to take it away and she was instantly pointing at her ears, to ask us to put it back. She was emphatic in her 'yes' when I asked if she wanted one.<br />
<br />
So if we don't get the call for surgery before next Monday she'll have a fitting appointment for her new hearing device - and then it'll be game on for speech development and we can see what she's really capable of. Things are getting exciting!<br />
<br />
And meanwhile we try not to think too much about the heart. She knows and understands and doesn't want to talk about it.<br />
<br />
Last week was the kindergarten AGM, where all the new parents arrive and vote on the next year's committee. She was reacquainted with the educators and it was lovely to be talking with them about her needs for next year. It's all really becoming real. She's been home with me for so long and it's been just us for so much of it, it's been hard to imagine life beyond this year, but it's starting to take shape. Today I booked two appointments for next year. Need a new diary!<br />
<br />
Many things going on right now, and I can't wait til Christmas because I am living under the delusion that things will settle down by then. (As if!)<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-70239781931235548072016-10-26T02:56:00.000-07:002016-10-26T02:56:36.976-07:00Forgot to touch wood!Hey all,<br />
A month or two ago I realised that for the first time in Jacinta's life she'd managed to clock up twelve straight months out of hospital. That's saying something when you're approaching 4 years of age!<br />
<br />
Now, I'm not your throw-salt-over-your-shoulder, don't-step-on-a-crack-while-walking-under-a-black-ladder-on-Friday-the-thirteenth kind of person but as I say, I should have touched wood - but I forgot, coz I never do.<br />
<br />
I actually thought I was going to be telling another knock knock joke - you remember the one where it's Luke - Luke Aemia, since Jacinta has been rather more tired lately and there have been some petechiae and a nose that wouldn't stop bleeding, but on the very same afternoon as I was calling the Oncologist to find out the blood results, the Cardiologist was trying to call me to tell me Jacinta needs another round of heart surgery.<br />
<br />
The upshot is, bloods are nothing to worry about, but the membrane growing across her left ventricular outflow tract is likely to cause a problem if it's left there, so they want to take it out.<br />
Should be a short procedure, but with all the scar tissue it'll take some time like it did last time. They have to cut through very carefully so they take....their.....time. Not much time on bypass though, which is good.<br />
<br />
And because things are quiet at the moment, they want to do it in November - which is a couple of weeks away!!<br />
<br />
Suddenly we've gone from no hospital on the horizon and everything mostly normal (bar the tiredness etc) to a pre-admission appointment in a couple of weeks and surgery any time after that. We've never had such a short lead time, but I'm grateful for it. Hanging, waiting on tenterhooks for a year is something I'd rather not repeat. I like to write things in pen!<br />
<br />
So I'll update you as we need to and as it happens. See you in a couple of weeks!<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-84651814200907788152016-10-05T17:35:00.000-07:002016-10-05T17:35:24.838-07:00HoudiniHi all, yesterday I realised something and I just wanted to share.<br />
<br />
For a couple of weeks now, every time we go somewhere, I'd look back and see Jacinta with her arms out of her seatbelt. I'd tell her to put her arms back in, and she would, then she'd get a thumbs up and we'd be on our way again. This was not unchartered territory since each of my daughters had tried it on for a bit and then given up. After a little while instead of her stopping it, she started refusing to put her arms back in, so I'd go round and do it for her as I had already said I would if she didn't comply.<br />
Then it got so as her arms would be back out again as soon as I'd returned to my seat and she was trying to unclick the whole thing.<br />
<br />
I decided I'd need to go out and find a strap to connect the two shoulder straps - which we seem to call a Houdini strap. (In this part of the world we have two shoulder straps connected to another strap at the crotch.) But I remembered something that I'd noticed recently and not had the chance to correct and thought it might make it harder to get out.<br />
<br />
I'd noticed on clicking her in that she had recently grown beyond the height of her shoulder straps. There's usually no mucking around where the car's concerned, either we're getting straight in or straight out, so spending 5-10 minutes adjusting the straps hadn't crossed my mind at the key moment.<br />
<br />
I moved the straps to the next slot. The next time she was in the car I looked back and she was staying put, not even trying to get out. Every ride since her straps have remained in place. I asked her if the straps were hurting her before. She said 'yes'. Awesome.<br />
<br />
Now I'd be lying if I didn't feel a little silly saying that after two previous children I only just worked out that it might be the problem.<br />
<div>
<br /></div>
Mother of the Year! Big clap for me! Better late than never....<br />
<br />
So be aware! Shift those shoulder straps! (I'm sure most of you are right on it anyway.)<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-89618405220199318972016-10-03T07:00:00.001-07:002016-10-05T17:43:47.911-07:00October just turned up - and it brought friends!Well, you know me and Trisomy 21 awareness - lackadaisical bordering on cynically negligent. I was going to let this one go through to the keeper, having blogged at least twice this financial year....<br />
<br />
But then things happened. They started a review of Medicare and someone suggested putting non-invasive prenatal screening (NIPS) for chromosome differences on the schedule, Sally Phillips (the actress we all know as 'Shazza who says f*ck a lot' from Bridget Jones' Diary and from the classic Australian comedy "Boytown" - I don't watch Miranda but apparently she's in that too) made a documentary about Down Syndrome and dared to give it to a UK TV station for broadcast next week, and the ABC ran an episode of Australian Story about a young adult couple with Trisomy 21 who want marriage and babies. <br />
<br />
The T21 internet has pretty much broken. Seriously, I can't keep track of all the Facebook posts, threads, comments and which groups they're all in. I've been added to two more (very cool) groups this week!<br />
<br />
And why? October is Trisomy 21 (OK, Down Syndrome) Awareness Month. And it's on for young and old.<br />
<br />
And what gets my goat the most? It's not the parents of the adults who want marriage and babies, because frankly that's their business and I have the same aspirations as they started with and my child is all of 3 going on 20, so when I get my crystal ball I'm entitled to a public opinion.<br />
<br />
It's also not so much that someone wants to add the NIPS test to the Medical schedule. This is a useful tool for those who are informed. The issue is that VERY FEW PEOPLE ARE ACTUALLY INFORMED. More on that later.<br />
<br />
What really gets my goat is the reaction Sally Phillips' documentary (which hasn't even aired yet) has received from the British press so far. All of a sudden she's being labelled 'unhelpful' in an article entitled<br />
<h1 class="content__headline js-score" itemprop="headline" style="color: #333333; font-family: 'Guardian Egyptian Web', 'Guardian Text Egyptian Web', Georgia, serif; font-size: 2.25rem; font-weight: normal; line-height: 2.5rem; margin: 0px; padding-bottom: 2.25rem; padding-top: 0.375rem;">
Sally Phillips’s film on Down’s is ‘unhelpful’ for families, warns antenatal specialist.</h1>
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<a href="https://www.theguardian.com/society/2016/oct/01/downs-syndrome-screening-jane--fisher-expert-criticises-sally-phillips-bbc-documentary">https://www.theguardian.com/society/2016/oct/01/downs-syndrome-screening-jane--fisher-expert-criticises-sally-phillips-bbc-documentary</a></div>
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Now Jane Fisher is from a group called Antenatal Results and Choices. This group is buddies with several manufacturers of the NIPS tests and has been accused of being anything but supportive of at least one person who wasn't keen to terminate her pregnancy. Her job is not to help people through their pregnancies to their natural conclusion.<br />
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She claims that it is unhelpful to make a parent's decision more complicated, when deciding whether their foetus is going to live or die. More complicated?? A life or death decision should be less complicated?? Are we a little production line, where a parent comes in after a test, is told the right thing to do and coerced into doing it, therefore making it easier on them somehow? Who decided that was the ethical thing to do?<br />
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Next she claims that it risks offering the suggestion to those who have terminated that they have made the wrong decision. Now please don't think I am meaning to be at all callous about this, because I feel absolute heartbreak for those people. I do sometimes wonder when my little girl runs around charming the pants off people whether or not there are those around who have terminated a pregnancy and how that makes them feel. Maybe they look at her and assume it won't be fun and games forever, or maybe they feel a guilt they find hard to live with. I don't know.<br />
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But that is NOT our responsibility.<br />
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That is their responsibility. Sometimes we make bad decisions and we then have to live with those decisions - unless we were born in the 90s or later, in which case our parents will bail us out or we'll blame the establishment. (OK, sorry for the millennial-bashing! Bad girl! Hand-slap delivered.)<br />
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Why must we continually tiptoe around people who made bad decisions and are not taking responsibility for them??!!<br />
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Sally Phillips is highlighting an issue which affects expectant parents all over the Western world. The medical establishment seems to have the idea that they should inform parents of all the risks in everything and downplay the highlights to avoid giving false hope, presumably to avoid being sued.<br />
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But this has gone too far, to the point where my husband was berated by a doctor well after Jacinta was born (this was a routine GP visit for his own health) for not terminating the pregnancy. This served absolutely no purpose other than allowing the doctor to voice his opinion and showed no agenda other than eugenics. The logic was 'she has Trisomy 21, why wasn't she aborted?', which is discrimination at best and eugenics if we're really confronting it. No-one was going to sue him for saying absolutely nothing and carrying on with his job of diagnosing and treating my husband.<br />
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It's no news that parents all over Australia are given a possible, probable or confirmed diagnosis and then pressured to terminate - often repeatedly and sometimes even very late into the pregnancy.<br />
Parents trust their doctors, assume they would be told if there was more information to be had and consider the information they have been given very carefully and consulting their conscience.<br />
<br />
The information given to expectant parents is often poor, outdated and negatively biased. It leads to very high termination percentages, at a time when Trisomy 21 has never looked so good. It is the aim of many parents both in the UK and Australia to get the right, unbiased information out there. I still say that a google of regretful parents with children with T21 brings up nothing but regret for termination and one newspaper article that I hope the child of that mother never reads.<br />
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Yet the advice given to pregnant parents is that the regret is on the keeping side and the relief is on the termination side. That's not how it looks on the internet. I know it's not how it looks on the keeping side. I don't know anyone who has terminated and commented about it, but the one comment I've seen was a character in Eddie Perfect's play The Beast, agonising over a decision made to terminate in the past.<br />
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I chose not to have genetic testing with any of my children. I wouldn't kill a puppy so I wouldn't kill a foetus. That's my choice. I didn't want to have an agonising wait while I sat on a possible diagnosis for 6 months. Fear of the unknown is bad enough when you have nothing to worry about in pregnancy, let alone when you do. I was lucky to have a heads up a couple of weeks before, not enough to seriously worry about it but enough not to be completely shocked when Jacinta was born.<br />
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If I ever had another baby, I would probably choose the NIPS test. I feel informed enough now that the test would be useful information about what to expect, rather than worrying me about a big unknown.<br />
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I am informed. I would choose to give birth to another child with Trisomy 21 if another was conceived. This is not a religious decision, it's a rational decision based on my experience so far. <br />
If up to 90% of parents are choosing to terminate I can only assume either that they are extremely selfish (preferring to kill a life form rather than be inconvenienced, as you would a fly) or grossly misinformed. I am pretty sure (in most cases) that it's the latter.<br />
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If these NIPS are to become the norm, then so must become being properly informed before you take the test - or at least upon a positive result. Then parents can be empowered, not kept in the dark. They can know that they will be terminating a life that chances are will be much more like your average Joe than not. It might not be as easy and there might be a few more sacrifices, but don't they say that life without pain has no meaning?<br />
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And we can't keep tiptoeing around those who have already chosen. We can make those advising them accountable and more responsible in the future for those who receive a diagnosis.<br />
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Personally I would love to see a positive diagnosis delivered by a person with Trisomy 21 who knows the stats and can candidly answer questions about their life. The world probably isn't ready for this, but I know there are people out there who are up to the task. Let them speak for themselves.<br />
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And let the parents fully understand, and make a real choice, one they can live with.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-59328569283560722772016-09-13T06:20:00.000-07:002016-09-13T06:20:06.841-07:00Milestones...Oh, how I love milestones. The things that you watch for impatiently with your first, then cynically neglect with your second (because it really doesn't matter WHEN they happen) and finally pray they'll happen sooner than later with your less neurotypical third (or insert appropriate number) child.<br />
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It is a truth universally acknowledged amongst the parents of the developmentally challenged that the harder won, the sweeter the victory and one of the things I love best about having so many T21 families on my Facebook feed is you get to hear about so many hard fought battles and hard won milestones.<br />
<br />
This week my middlest lost her first tooth - which the tooth fairy kind of forgot to leave money out for overnight because someone may or may not have thrown out the tooth without realising it....(no matter, crisis averted with some quick thinking and a handy diversion).<br />
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This week also Jacinta had a milestone of her own. She was invited to her first party!!! It was a gluten-fest, let's be honest, though she didn't have much. It was just so exciting to have a party invitation. She also got tired out faster than the other kids - except one, who cried the whole party through.<br />
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It's always lovely when your child receives his or her first party invitation. It's such a lovely validation of their membership in society. With T21 though, there are children whose parents notice they are being excluded and they understandably vent on Facebook. I don't know if it's possible not to let those posts affect your optimism about your child's social prospects. I confess that for all my best intentions about her having as close to a normal life as possible, I have come to realise in life that there are certain things you can't force children to do. One is do a wee. Another is to like somebody.<br />
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A child with his own agenda will wee where and when he deems appropriate (for many that will be whatever gets him the usual bribe). A child with or without an agenda will like whomever he chooses for whatever reason he sees fit. We can't make people like our children. The best we can do is try to bring our children up to be likeable people. Thankfully Jacinta seems to have this sorted. Of about 10 children in this particular group, she was one of 4 who made the invitation list. Yay!<br />
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It's hard not to puff your chest out a little bit when your "drain on society" "burden to others" child is welcomed with open arms. It's also hard to think about campaigning for acceptance and inclusion when amongst this group it is simply assumed. It's hard not to feel vindicated about thinking we're setting the bar too low on that one.<br />
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It was hilarious when I looked around towards the end wondering (as I do from time to time) how she appeared in that setting amongst the other children. The most noticeable difference between her and the other children was racial - she and I were the only caucasians in the room. It felt a little racist to be pointing it out later to others - which makes me wonder, is it not ok to point out racial difference but apparently ok to point out chromosomal difference - or is it just rude to point, like my mother always said?<br />
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Food for thought - gluten free!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-32004983608395964362016-07-09T09:56:00.001-07:002017-07-11T03:41:21.762-07:00Let's talk about the R word. (Warning: frequent use of the R word)So I'd like to talk about the R word.<br />
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There are so many angles to this conversation it's hard to know where to start.<br />
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Many of my Australian readers will have noticed that a couple of Australian tennis players dropped the 'R' bomb during the week. This gained extra attention because a friend of mine, Kat - mum to Parker of the Bonds Baby Search (which he won) and writer of many articles and at least one blog (parkermyles.com), decided that was enough and called them out on it via a video rant she posted on her blog's Facebook page - <a href="https://www.facebook.com/ParkersPlaceAustralia">https://www.facebook.com/ParkersPlaceAustralia</a>/ . This went viral and a few media programs picked it up.<br />
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In case you've missed it, there is a strong feeling amongst many parents of children with Trisomy 21 that the word 'retard', or 'retarded' has lost its usefulness and is now just derogatory and should be banned. Of course, there are opinions in the T21 community right along the spectrum from not being bothered about it to being all for the banishment of the word completely, in all contexts (including medical terminology).<br />
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So from where does this word originate?<br />
The Oxford Dictionary says it's from 15th Century French retarder, from Latin retardare, from re- 'back' + tardus 'slow'. (Its brother 'ritard' has long been used in classical music with the same connotation, slowing down.)<br />
The Oxford has a verb definition: Delay or hold back in terms of progress or development:<br />
<i>'his progress was retarded by his limp'. </i><br />
This is how you hear the word used in a medical context. You hear 'growth retardation' quite regularly. As a verb it describes slowed growth. It's benign in its intent. It is describing abnormal growth in neither a positive or negative way. It's the opposite to acceleration. No-one's making fun of anyone or being rude when they use it. This is a verb.<br />
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Somewhere along the line, this verb turned into a noun, and that's where the trouble started.<br />
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I've stolen the following from Wikipedia [Retard (pejorative)]:<br />
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<b>Retard</b> when used as a noun is a <a href="https://en.wikipedia.org/wiki/Pejorative" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Pejorative" wrc_done="true">pejorative</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span> word used to refer to people with <a href="https://en.wikipedia.org/wiki/Developmental_disability" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Developmental disability" wrc_done="true">mental disabilities</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span>.<sup class="reference" id="cite_ref-1" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-1" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[1]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup> The word retard was widely accepted in the late-1900s to refer to people with mental disabilities; however it is now more commonly used as an <a href="https://en.wikipedia.org/wiki/Insult" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Insult" wrc_done="true">insult</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span>. The word has gained notoriety for causing a growing number of mentally disabled people to feel unfairly <a href="https://en.wikipedia.org/wiki/Stereotype" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Stereotype" wrc_done="true">stereotyped</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span>.<sup class="reference" id="cite_ref-2" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-2" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[2]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup></div>
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<span class="mw-headline" id="Etymology">Etymology</span></h2>
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The word retard dates as far back as 1426. It stems from the Latin verb, retardare, meaning to hinder or make slow. The English adopted the word and used it as similar meaning, slow and delayed. The first time the word “retard” was printed in American newspapers was in 1704. At this time, it was used in a way to describe the slowing down or the diminishing of something. The first time that any form of retard was used to describe mentally disabled people was during the 1960s when "there was a push among disability advocates to use the label <i>mental retardation."</i><sup class="reference" id="cite_ref-:0_3-0" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-:0-3" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[3]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup> This push from advocates was because older terms for the mentally disabled, like moron, imbecile, feeble minded and idiot, had developed negative meanings.<sup class="reference" id="cite_ref-:0_3-1" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-:0-3" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[3]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup> Retard was not used to refer to mentally disabled people until 1985. It was widely accepted to refer to people who are mentally disabled as mentally retarded, or as a retard. From there, it turned quickly into a pejorative term, as people began to use it interchangeably with words like stupid, or idiot. Many communities, particularly in <a href="https://en.wikipedia.org/wiki/North_America" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="North America" wrc_done="true">North America</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span>, regard the word as no longer socially acceptable. The fact that it is still commonly used has led to a continuing debate. A common replacement is the phrase “the r-word.”<sup class="reference" id="cite_ref-4" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-4" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[4]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup></div>
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<span class="mw-headline" id="Modern_use">Modern use</span></h2>
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Retard has transitioned from an impartial term to one that is negatively loaded. For this reason, it is now widely considered degrading even when used in its original context.<sup class="reference" id="cite_ref-5" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-5" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[5]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup></div>
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Most commonly when retard is being used in its <a href="https://en.wikipedia.org/wiki/Pejorative" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Pejorative" wrc_done="true">pejorative</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span> form, it is not being directed at people with mental disabilities. Instead, people use retard when they want to call their friend stupid, an idiot, or a loser.<sup class="reference" id="cite_ref-6" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-6" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[6]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup> This use of the word retard is the part of what the campaigners are trying to attack. The campaigners are trying to make everyone understand that retard is a <a class="mw-redirect" href="https://en.wikipedia.org/wiki/Derogatory_term" style="background-image: none; background-position: initial initial; background-repeat: initial initial; color: #0b0080; text-decoration: none;" title="Derogatory term" wrc_done="true">derogatory term</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span> no matter the context.<sup class="reference" id="cite_ref-7" style="font-size: 11px; line-height: 1; unicode-bidi: -webkit-isolate; white-space: nowrap;"><a href="https://en.wikipedia.org/wiki/Retard_(pejorative)#cite_note-7" style="background-image: none; color: #0b0080; text-decoration: none;" wrc_done="true">[7]</a><span class="wrc_icon wrc13" rating="{"icon":"icn_extensiontop_green.png","rating":1,"weight":3,"flags":{"shopping":null,"social":null,"news":null,"it":null,"corporate":null,"pornography":null,"violence":null,"gambling":null,"drugs":null,"illegal":null}}"></span></sup></div>
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<span style="color: #252525;"><span style="font-family: inherit;">So we are left with a bit of a problem as you can see in the last paragraph. People growing up since 1985 have adopted a noun usage of the word (I rarely hear it used in those over 40). It's like the boys at school used to call people mongoloids - and I'm pretty sure they had no idea what it even meant, I certainly didn't - they just wanted to be mean to the girls. </span></span></div>
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<span style="color: #252525;"><span style="font-family: inherit;">It's generally the teens and young adults I hear using this word as a noun, and these are usually very kind people who are using it to describe themselves doing something they consider to be less than their usual example of intellectual splendour. Brain fart moments, etc. In that sense, calling an action of theirs retarded actually is descriptive of a slowing in themselves, so is almost linguistically correct - except for how the word got to there in the first place. They might also call a situation retarded, but not another person or their actions. This would be an adjective use.</span></span><br />
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<span style="color: #252525; font-family: inherit;">Less kind individuals call their friends retarded or retards kind of affectionately, but I don't have any friends who would say that to me. I don't hang out with people who point out my bad points. </span></div>
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<span style="color: #252525;"><span style="font-family: inherit;">Even less kind individuals would use the word as an insult. This is the kind of person you'd avoid on the street or get into a scuffle with. They're looking for a fight. They would also call you a dickhead, a fuckwit, an arsehole, a cunt, ad libitum, with all the spittle and forceful hate that accompanies such vitriol. We don't have to take any of this onboard, but it's the kind of language that just doesn't belong anywhere but has somehow crept into what is considered normal usage in many circles - Flinders Lane on a Saturday night for instance. Also, those insults also have some degree of respect attached to them. Calling someone a retard implies they deserve no respect. </span></span></div>
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<span style="color: #252525;"><span style="font-family: inherit;">The telling thing you read above is that the adoption of this word for intellectual disability has come about because the previous words used (moron, imbecile, feeble minded and idiot) had developed negative meanings. I'm guessing that the words used before those ones were replaced because they too had developed negative meanings and from that I extrapolate that if we go on a campaign to banish the word retard simply because it has a negative meaning, it won't remove the negative intent. The negative intent is what makes the word so hateful and ugly. </span></span></div>
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<span style="color: #252525;"><span style="font-family: inherit;">I consider us very lucky. Jacinta is surrounded by people who love her and think she's cute, beautiful and awesome. This includes her extended family, but also includes those who see her at school, at kinder, our friends, the Facebook community, our church, the staff at Aldi, anyone we meet in the street, those who watch her passing as she carries on with life - everyone. She is surrounded. By people who think she's cute, beautiful and awesome. </span></span></div>
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<span style="color: #252525;"><span style="font-family: inherit;">While every small child with Trisomy 21 is individual, you would expect that every small child </span></span><span style="color: #252525; font-family: inherit;">whether they have T21 or not would be considered cute and beautiful purely by virtue of the fact that they are little and cute and doing cute little things. No-one ever expects their toddler to be the subject of vitriol and degrading remarks, yet for too many parents whose children have T21 this is exactly what they encounter when out and about, at the shops, at the Doctor's surgery, going about their business. These children are called 'retard' or 'retarded' and the people saying it mean it with its full negative connotation. Some of these people mean it in a hateful way, some in a demeaning, degrading and disrespectful way. </span><br />
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<span style="color: #252525; font-family: inherit;">You can imagine - or perhaps you can't, but you can try - how it could be for a parent who loves their little child with all their heart and considers them the centre of their universe to hear someone saying horrible things to and about their child who is not only far too small to defend him/herself, but maybe even too young to fully grasp the intent of the words. </span><br />
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<span style="color: #252525; font-family: inherit;">Parents do at times come across nasty people who imply subtly that perhaps their child is doing the wrong thing to the person's own, or that a parent is doing the wrong thing in raising the child. This is an unfortunate part of hanging out with humans. If there's an infraction, call it, resolve it and carry on, upfront and frankly. When a child has been doing absolutely nothing wrong in the first place and you start calling them names, that is bullying. The bullying of a child impacts on the parent, absolutely. The words of torment become words that trigger all kinds of upset and anger, particularly if the anger is directed at some nameless stranger who walked passed, shot out the insult and slunk away before the shocked parent could think of anything to say in retort. </span><br />
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<span style="color: #252525; font-family: inherit;">Unfortunately it doesn't end when a child gets old enough to defend him/herself. Even the best of us struggle to find the killer comeback when a bully decides to have a go at us - and as we all know, bullies don't grow out of it, they grow up and become adult bullies if someone doesn't do something about it. </span><br />
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<span style="color: #252525; font-family: inherit;">I'm betting that all around the country there are intellectually impaired children, teens and adults (whose thought processes are a little like many neurotypical adults who can't function in the morning without coffee and are at that point also intellectually impaired) who are still seething over the incident or incidents where they were viciously insulted and are wishing they had only managed to come up with the awesome comeback they have now constructed. I'm fairly sure they probably replay this moment in their heads from time to time, in a version where they say it and walk away leaving the bully stunned in their wake. As do we all. </span><br />
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<span style="color: #252525; font-family: inherit;">So if you call yourself mentally retarded in the morning before a coffee, that is a correct use of the term - except if you're in the US you should be calling yourself intellectually disabled because of legislation passed in 2010 called Rosa's Law which removed the term 'mentally retarded' from all federal health, education and labour policy (and the implication is that it is now replaced across the board). </span><br />
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<span style="color: #252525; font-family: inherit;">But let's get to the absolute crux of the problem, to which I alluded earlier. </span><br />
<span style="color: #252525; font-family: inherit;">One day intellectually disabled will be a stigmatised term and a noun will be derived from it which describes those with slower thought processes (belonging to a certain group with distinct medical diagnoses). We as humans want to come up with a quick and easy descriptive term - particularly in Australia we shorten everything. It's like calling people with T21 'Downsies' - it's quick and easy, and I'm sure very few people who use/d that term mean/t it in a derogative way. </span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">We have people who are using this word almost quite appropriately to describe </span></span><span style="color: #252525;"><span style="font-family: inherit;">their own intellectually slow behaviour, and it is with good humour and benign intent. From what I see, this is the most common usage of the word and it is very difficult to effectively explain to people who are using a word like they would any other - be it 'silly', 'sugar' or 'pumpernickel' why exactly they're having a perfectly useful word removed from their vocabulary willy nilly. They can't see that they're insulting anyone but themselves and they feel they should be allowed to do that. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">Still, there is language that is benign and language that is offensive. Some have a higher threshold than others for offensive </span></span><span style="color: #252525;"><span style="font-family: inherit;">language - and I find it amusing sometimes to witness a person with a high threshold for offensive language suddenly be shocked to hear a particular word used around them. Different words are offensive for different people. As a general rule, if you wouldn't say it to your grandmother, or in a job interview, then just don't say it. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">Also, looking at many words that are considered offensive nowadays, if you trace them to their roots they were just working definitions for things that needed a word. I can think of an insulting name for someone whose actions are not up to your standard which used to be the term for someone born out of wedlock - regardless of their character. If you look at the history of the C word, it was not considered taboo in the middle ages, but gained a vulgar use in the last couple of hundred years. 500 years ago people were dropping the C bomb without batting an eyelid. The word 'gay' was around for 500 years before it took on any kind of negative connotation. Then it went from having a promiscuous slant in the 1890s to having a homosexual slant in the 1920s, which definition has gone from being insulting to being a benign label for a group in society - almost full circle. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">Words change. Meanings change. The language is fluid. The R word will change. If it stays in use its meaning will change. If it drops out of use it will be replaced by another. So what do we do? </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">We change attitudes. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">I have said before that I don't go for inclusion and acceptance. This is exactly why. Inclusion and acceptance lead to insults behind closed doors when they're not accepting and including. It implies that there is effort required in letting people from </span></span><span style="color: #252525; font-family: inherit;">certain minorities live happily and exercise their human rights. </span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">What I shoot for is respect and understanding. When you respect someone, you don't have a nasty stereotype for them. When you understand them you can see their viewpoint and you have no more reason to exclude them than the person on the other side of you. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">We need to educate, educate, educate the people of the world so they can understand the lives and abilities of those whose thought processes - or even physical processes - may be a little slower than </span></span><span style="color: #252525; font-family: inherit;">the arbitrary cutoff for 'normal'. </span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">We need to show the people of the world how many things the above human beings actually can achieve. I know Stella Young didn't want a medal for getting up in the morning, but when I look at what it takes to get up in the morning and out of the house, I respect those with physical or intellectual disabilities for showing up, especially when so many typically developed people would consider it not worth the effort and stay home on the couch. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">We also need to clean up the language we're hearing around us. Where have manners gone? Where did society change the rules on acceptable language? When I was a child you would never have heard the kind of swearing on TV or in movies that you hear these days - not to mention recorded </span></span><span style="color: #252525; font-family: inherit;">music, and the content of the lyrics. I have to keep the radio on golden oldies stations so I can be sure the music and discussion is appropriate for primary age children. </span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">Then there are the billboards up everywhere. It's impossible to shield my daughters from sexualised images of women when there are women in lingerie, slicked with oil and sprayed with water, skin to skin with some guy - promoting sunscreen, or shoes, or undies, on the way to school! </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">Culture has slipped very fast into a zone where standards have gone way down. This is the environment our young women and men are being raised into. Can we really expect them to magically imbue </span></span><span style="color: #252525;"><span style="font-family: inherit;">some class or respect when they are living daily in an environment where these are not valued and barely shown? </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">If we want to get rid of the R word, it's a bigger problem, as Kat said. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">It's a bigger problem than just a word. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">It's about respect, it's about understanding. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">It's about knowing who actually inhabits your city or your country. It's about knowing more than just your own little suburb or school or workplace or church group. </span></span><br />
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<span style="color: #252525;"><span style="font-family: inherit;">It's about being interested, and learning about the world you live in - from the actual people themselves, not from some biased media source. </span></span><br />
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<span style="color: #252525; font-family: inherit;">It's about standing up for class and standards and creating a world where all people are respected, and respectful art and advertising are supported.</span><br />
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<span style="color: #252525; font-family: inherit;">This issue is deeper than a word. It's ingrained in</span><span style="color: #252525; font-family: inherit;"> our culture. We as a country can change it for the first time by deciding one by one to do these things. </span><br />
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<span style="color: #252525;">For centuries, maybe millennia, there has been vilification and exclusion of those who are a bit more unique than the rest. This once used to be based on survival. Now a man can survive even if he's lying in a coma for a decade. We have moved on and our attitudes can change. </span><br />
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<span style="color: #252525;">We just need someone to start. </span><br />
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Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-587987529716680225.post-81664668763857053252016-05-22T06:02:00.000-07:002016-07-07T06:33:49.222-07:00Surprisingly normal. I've been neglecting you all, I know!<br />
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Why?<br />
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I've been busy, and busy with things other than Jacinta!<br />
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It's funny, the moment she was first potentially diagnosed, a few hours after birth, I wrote off the next five years as years of intense work and no fun.<br />
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I'm not sure what I thought, whether I thought that she would be disabled and hard work and magically not hard when she turned 5 or 6 and went to school, or if I just didn't see the fun in the equation, or was just shell-shocked and not thinking clearly.<br />
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The thing is though, I spent the first 2.5-3 years of her life taking care of a sick child. There were moments when she was doing well, like the time we visited the paediatrician at about 6 months and she said 'she's just a bonny baby' with a tone of surprise at how normally she was presenting.<br />
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There were no decent opportunities to get moving with any intensive therapies, and to be honest she's just kept doing so well considering her handicaps (leukaemia, heart, fluid in the ears) that I haven't felt the urgency to do lots of intensive therapy.<br />
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We have two other daughters, my eldest and my middlest, who were 2yo and almost 5yo when she was born. Doing my eldest's 5yo birthday party with 19 attendant princesses and one prince while Jacinta was in intensive care was quite a business! Got it done though, with help from some kind family, friends and acquaintances. <br />
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These other daughters have spent the last several years existing with less attention from me, either because I physically wasn't there, stuck in hospital, or because I was constantly thinking of other things we needed to be doing. Then I got burnt out, starting late 2014 and it didn't go away for a whole year, so I decided it was time to address it. I quit everything and gave myself a break.<br />
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Still, this is a byproduct of having a sick child, which is partly due to the chromosomes, but could just as easily not be. I've got my wick back, but am determined not to burn at both ends, since we all know how that one goes. My husband is working interstate again, like a few years ago, so there are limits to what we can do but I can write things on the calendar in pen and actually made it, as planned, to visit my dear friend in another state for the weekend, no kids in tow.<br />
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There are still things happening which are fallout from the past three years' craziness. My eldest was a little slow in getting her backwards letters and numbers sorted, which was ok in Prep but is not cool in Grade 3. I've started working with my sister who is a behavioural optometrist who very kindly sees us once a week and give us exercises to do.<br />
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My middlest reported to me with what seemed to be a broken tooth. As a background, she's had some teeth issues before which I considered a close call, but she's been diligently brushing since that time last year and we weren't due back to see the dentist yet.<br />
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The broken tooth turned out to be a seriously decayed tooth, and it wasn't the only one. It turns out she's been pretending to brush and coming to me with toothpaste in her mouth and showing me her minty breath. Thank goodness she has the highest pain threshold of anyone I know and she's capable of sitting in a dentist's chair for an hour.<br />
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So I'm having to work with the good old soldier's maxim, 'no man gets left behind'. This is a favourite with the Institutes, and is why the whole family usually gets involved with an Institutes program. Up until recently my eldest and middlest were getting left behind, so I've put the focus on them, to help us all get to square one, and I'm still working on my own health and wellbeing so that I am in a state to be useful to them all, especially since my husband's health is still not 100% brilliant.<br />
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And though these types of issues aren't super normal in your average family, they're not out of the ordinary in an oncology family or a Heartkid family.<br />
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I was looking back recently, when a person I know told us that they were expecting a child with Trisomy 21. I was looking at what helpful info I could give them, since they were still processing the news. What struck me when I thought about it, was that there weren't a whole bunch of tips and tricks I could pass on, because the things I know which are particular to Jacinta are things to do with hospitals and medical personnel - and Jacinta's medical history, while not unique, is not the norm for Trisomy 21. I know four children in Australia with a heart condition and leukaemia in remission and Trisomy 21. There would probably be a few more, but these are among thousands of children in Australia with Trisomy 21.<br />
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The thing that struck me most, above all, was that Jacinta is constantly surprising me with how normal, average and unexciting/unproblematic she is. (Though of course very charming, funny, clever and obstinate.)<br />
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Right now as I type she's mucking around in the lounge room with her sisters. If she gets bored she'll probably go outside and find something to do in the garden - ride in the red & yellow car or attempt to ride one of the tricycles which she can now reach with her size 1 legs. The things she's doing are not necessarily all normal for a three year-old, but they are completely appropriate for the level she's at. She's sometimes a mix of attitudes and abilities, so that makes life interesting, but it's so similar in many ways to bringing up individual children who differ in ability naturally, that it feels quite normal. <br />
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I'm not sure I'd see it this way if she was my only child being compared to other children, or my second being compared to my first. Having brought up two completely different children previously, the younger of which has significantly neater handwriting than her older sister, my perspective on ability and the spectrum of 'normal' was already reasonably expansive.<br />
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Our usual weekday often consists of dropping sisters to school, coming home, having a snack and watching a bit of Playschool. She'll get into an argument with me about wanting to use my iPhone. I'll say 'no' if I don't need a convenient distraction, and she'll stamp her foot and walk off with her arms folded. She tries to get into the pantry cupboard, she tells me when she's thirsty. She's learning to say 'wee wee' at the appropriate times and she's too grown up for the potty; she'll sit on the toilet, thank you very much.<br />
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She DOES NOT need help. If you dare to accidentally help her with something, Oh my Lordy, the dummy will be spat and whatever you did will be reversed so that she can do it herself.<br />
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All the 'look at what my child did' posts by parents on social media relate to Jacinta as they did with my older children.<br />
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Ah, I was wrong; she didn't go outside. She started making prank calls to Daddy, who's interstate, with her sisters.<br />
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Jacinta looooves talking on the phone. I pretty much can't carry on a conversation in her presence because she'll be constantly requesting in progressively less polite ways to speak to the person on the other end - no matter who they are. She's even spoken to someone at 000 I believe, once or twice....<br />
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There's an awful lot of normal going on in our lives, now that her health issues are (touch wood) under control.<br />
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And I promise I'm not leaving out the less good bits. This is life at the moment. We're living the life of a 30-ish month-old, which is about right, considering she's had time off sick. And even if she was behind purely because of the chromosomes, that wouldn't matter, because every single child is building abilities on top of previously attained abilities. That is exactly what she's doing.<br />
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If your child is lagging well behind most others their age on a particular ability, you isolate the reason, remedy if possible and let them carry on building up that ability to a level that can sustain them long term. That's how it works with all kids, the ones with fluid in the ears, the ones that need glasses, the ones with sensory issues, the ones on the autism spectrum, the ones with cerebral palsy or who have had cancer treatment....the list goes on. That's how it is with Jacinta.<br />
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So I'm back doing NAET to try to reduce the fluid in the ears. The speech has come along since she's started the NAET and since she started dance classes. It's interesting, I use her interaction at dance class as a barometer for how well she's hearing. It's definitely improved since her hearing was checked last time. This is a busy morning; dance class and NAET appointment. That's the few hours a week I'm currently spending, and it's no much more than your average bored 3 year-old whose sisters are at school and is trying to fill in the days.<br />
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I plan to get her doing swimming. That'll be another hour a week. It really isn't a drain. The swimming times are around school pickup which might mean her sisters go to after school care - they'll be DEVASTATED. (Can you detect the sarcasm? They've been begging to go to after school care!)<br />
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I'm trying to get overwhelmed and upset about Jacinta's condition, and I just can't justify it!!<br />
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I know, I have no crystal ball and I cannot guarantee that her abilities won't plateau permanently next week, but for now, she's doing just fine. Anything else I can do for her - and I do plan to do more for her, particularly reading once her hearing is ok - is a bonus.<br />
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So, when sitting in my wheelchair at her bedside when she was one hour old, I never ever thought I'd be comfortable to let her be and develop as she might. I expected more trouble. How lovely that I was so wrong.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-84317479407748009442016-03-20T14:52:00.000-07:002016-03-21T20:18:40.639-07:0021st of Trisomy 2016Hello All,<br />
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It's the 21st of Trisomy again!<br />
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Now, I'll be frank. There is one message I really want to get through to everyone.<br />
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Please, can we recognise that it is not the words that are the problem, it is the intention behind them.<br />
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You can call someone whatever words you like; it's the intention behind them that gives them their ultimate meaning and effect.<br />
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What's the difference between calling someone a retard and calling them cognitively impaired? One is said perhaps with antagonism, perhaps endearment, perhaps love, perhaps frustration. One is said with perhaps respect, perhaps disdain, perhaps love, perhaps frustration.<br />
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Several times over the past few years I've had conversations with my eldest and my middlest about the good old 'sticks and stones will break my bones but names will never hurt me' maxim. In primary school, I figure it's worth addressing this and building up resilience and perspective, since social media fast approaches and we'd best be prepared as well as we can be.<br />
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If someone's talking about you, especially if they don't know that you can hear them, or they don't realise they're talking about you since they're talking about a group that they don't realise you belong to; they might say all sorts of really insulting, poorly thought-out and hateful things. It can be very confronting to see what sorts of things can come out of the mouths of those you thought reasonable, intelligent and well-mannered.<br />
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With my children, they sometimes call each other certain things. Not so much names, but character traits. I have always had a hard and fast rule which is that they're only allowed to say 'you are' to someone if they're following it with a compliment because, if they're saying something negative, chances are that the person in front of them is not really e.g. lazy, mean, stupid etc, they're just having a moment.<br />
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Every now and then though, someone will slip up and one or the other will come running in and say, "she said I was a ....." and be very upset about it. My response is always, "do you agree with that?" and they'll always say that, no, they don't. My next question is, "what if I called you a banana, would you be upset about that?" and they always laugh at that idea. I start thinking up ridiculous things, like an armchair or a quiche or a balloon etc and this shows them the idea that these things really are just words and the power they have comes from whether or not you agree with them yourself.<br />
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They usually try saying, "what if I said YOU were stupid?", and my reply is always, "It wouldn't bother me, because I'm not stupid and I know I'm not stupid", and this is the absolute truth.<br />
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So if someone was to call Jacinta a retard, I'm afraid we'd be in a 'takes one to know one' scenario.<br />
For the record, no-one ever has. If anyone ever said retarded, well medically, her gross motor was quite retarded and is catching up, her speech is also to some degree retarded. Her growth was retarded but she is now a clear size 3 at 3 years, so she's definitely caught up there. If you call Jacinta a retard, you might as well call her a banana or a weather kite, and I'll be teaching her that, just like I do my other daughters.<br />
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Girls are called names. People perceived as weak are called names. You can either give the bullies a taste of their own medicine or rise above them and look down on them, pitying them for their simple-mindedness.<br />
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I've said before that I think aiming for acceptance and inclusion is setting the bar too low. I am not aiming for acceptance and inclusion for myself, because that implies that there's something wrong with me. I'm going for understanding and respect. If people don't understand and respect me, I have something to say about that, and if people aren't going to understand and respect Jacinta, her sisters and her friends, then I have even more to say about that, and I expect she will too.<br />
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Right now, she is fighting for understanding and respect in her own house. She is suffering from being a fairly non-verbal youngest sister, who is more likely to take the dolls and run off playing her own game with them than to take well-planned orders from her more sedate older sisters. She gets left out because of car seat logistics, having to go in Mum's car on her own when her sisters get to go in Dad's car. (There was a time when I couldn't leave her sight. The tables have turned, it seems!)<br />
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When this happens, the humpf begins, the hands go on the hips, the bottom lip comes up, the waterworks come on. She just wants to play, she wants to be part of the team. It's just that they don't get it and they don't respect her abilities yet. That will come. They're not discriminating against her chromosomes, they're discriminating against her 3ness. It's a little late in coming, my middlest had the same issue with my eldest when she was 1 or so, but I'm sure it will pass all the same, so long as she does gain the abilities she needs to gain their respect.<br />
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In our house, she's not just accepted, she's loved. She belongs. We understand the she is her own intelligent self and she's trying to work that body and break through the physical barriers to her expressing herself and her abilities. She is not just included, included though she is. (Excepting of course those choice sibling moments of frustration.) She has the respect of every one of us when we think about what she's managed to endure and thrive beyond. She has the respect of many people, both local friends and family, and around the world.<br />
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There are certain people in life that would never ever cop a 'retard' taunt, except perhaps in jest by their nearest and dearest. They command such respect that the idea is ridiculous.<br />
So, first, let's go for respect.<br />
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Almost as a corollary, there are people around who will sling around inflammatory character judgements etc like they're going out of style and dish out 'bitch', 'wanker', 'nob', 'pretentious hipster', 'tryhard' etc. about people they see across the playground, at the footy, at school, at work, at church, at the bus stop etc etc add infinitum.<br />
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This behaviour is childish, it is at the root of every 'retard' you hear and when it goes unchecked, we start getting T-shirts with offensive slogans. We get these because we thought it was ok to deny respect and understanding to that guy over there, but think we have the right to insist upon it for our own child that someone else neither respects, nor understands.<br />
<br />
So this cuts right down to the heart of Christian principles which, though many of us have moved away from the group, we were many of us raised by them and we know them in our hearts.<br />
Love one another. You don't have to be all about Jesus to love one another. You don't have to be going to a church, or even know where one is, to see the guy on the corner as your brother. You don't have to even know the words to any prayers or any religious anythings at all to see any person alive anywhere and decide that that person is on your team.<br />
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If we're all on the same team, we start to see each other's characteristics as potential, not flaws. When you love someone you forgive them their faults and try to understand them and help them change. When you decide to love someone consciously, you do the same.<br />
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Just imagine if we all did it at the same time.<br />
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Wouldn't that be something?<br />
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So this March, perhaps, might we worry a little less about the terminology of hate, and focus instead on the practice of brotherly/sisterly love?<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-47152730233508803342016-03-10T16:07:00.002-08:002016-03-10T16:18:05.739-08:00Three!<div class="separator" style="clear: both; text-align: center;">
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Yep. Three. And don't we know it!</div>
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Actually, she does know it and when she feels like it she says it too!</div>
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So where are we at now? </div>
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You'll notice that cake has Aldi "Smarties" (you'll have to google Smarties) on it. It was a gluten free, dairy free cake, with a little dairy in the icing..... We've not been super good on the special diet. In fact, to be honest, we've pretty much fallen off the wagon this summer.</div>
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Still, it's quite obvious that Jacinta is reacting to fructose. She loses some of each meal when she's been eating apple, pear, peach, wheat etc. Serious reflux. Very messy! We need to get back to Maria to try some NAET on that one. No big surprise there, it runs in the family.</div>
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Now, what else do we need to do NAET on - not the heart so much, apparently. She's finally off all her meds!! Yaaaay!! It seems the heart has settled down since last visit to the Cardiologist. The left leak has improved and the heart is the right size. Super cool. Being off meds un-complicates things a lot. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVBisAfitjfp6dHx9G99X-GQ9WYQ4pbUxT4I6OOsLWgrECGe_ZtxR5v8iQW2ZBbgd59XyZX0c5yP1rjOoe-LP3cgzptNp9Iod1bN0Jw26PFLGDw_WVQsTpAG9uvQ1alaj7QZF178xI-NQ/s1600/IMG_1147.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVBisAfitjfp6dHx9G99X-GQ9WYQ4pbUxT4I6OOsLWgrECGe_ZtxR5v8iQW2ZBbgd59XyZX0c5yP1rjOoe-LP3cgzptNp9Iod1bN0Jw26PFLGDw_WVQsTpAG9uvQ1alaj7QZF178xI-NQ/s320/IMG_1147.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jacinta wearing the dress her sister got the day she was born.<br />
(After having eaten something very tasty)<br />
While I'm reorganising the toys in the hallway! </td></tr>
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The big supplements question mark is hanging over our heads. There are so many different suggestions on supplements. We know that she has some degree of MTHFR mutation, from me at the very least. This means no folinic acid for her. She needs the good stuff. So any specific T21 multivitamin (of which there are a couple) need to have that taken into account. Then there are the things you could take because they might help, and the things you could take to circumvent problems which might crop up in the future, such as Alzheimer's. There are lots of them. Then there are things like probiotics, or Juice Plus (or equivalent, if there is one) to boost immune function.</div>
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Some people take everything they can. My goal is to find the exact right combination of the fewest things to achieve everything we feel we need to.</div>
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In terms of development, Jacinta's speech is coming along. She can say lots of things, especially mimicking me, which is obviously a part of speech development. She said 'cheese' in the supermarket today. She says 'shoes' spontaneously, because she is a girl. She also says 'nooooo' when I ask if she's tired for bed, because she's three. She runs away if I suggest it's bedtime, because she's three. She runs away if we're in the playground at school and I'm not looking. She runs away if I leave her outside the house without a locked gate. (For the record, I'm not making a habit of leaving her outside the house without a locked gate, but I did monitor her progress as she made her way in from the car behind me - our car is parked around behind our house - and she did make straight for the driveway and head for the street.) I guess when you've waited the better part of three years to master walking, you want to take the ball and run with it. </div>
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<tr><td class="tr-caption" style="text-align: center;">And sometimes you want to ride in the pram.</td></tr>
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This year I've taken my own advice and slowed down. I'm gaining back my energy bit by bit and I'm getting us off the gluten and dairy and really am going to tackle the sugar, salt etc and be making as much as possible from scratch. Not just for her, but for my energy, my husband's energy and my other children's health as well. It's time to start nourishing ourselves at every opportunity, rather than filling up here and there on rubbish. Cake etc is all very nice, but doesn't make for forward progress, and they do say that if you're not moving forwards, you're moving backwards. </div>
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The one complication this year is that Jacinta's immunity may be impaired. Her lymphocytes (one type of white cell which impacts your ability to fight infection) haven't recovered properly since the chemo. They were heading slowly up and now they've headed down again. There's a chance that her partially removed thymus may be partially responsible, or it could just be something funny going on. Next visit we're checking them out more fully. If it's an immune problem they'll be suggesting she have immunoglobulins supplemented in winter time. I haven't even started checking to see how the supplementation of immunoglobulins will affect a person's immune function over time. Might worry about that when we come to it. </div>
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The biggest change for this year is that our middlest is now at school. Being in the Southern Hemisphere, of course, the school year starts at the beginning of the year. This means that once again J and I have the pleasure of each other's company and each other's undivided attention. </div>
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When people I was talking to about our middlest's impending school entrance realised that it would mean one at home, they would start to say 'so Jacinta will be getting some alone time with Mummy...' and I'm afraid I failed as a mother every time. "Coz we've never had any of that!" was usually my reply. If there's one person who needs alone time with Mummy it's our middlest, who is not only the middle one, but had me removed while she was three so she missed those little hours while your sibling is asleep. Following close behind is our eldest, who's entering a world where things are embarrassing and you get picked on for being any different from the majority. (AKA being yourself.) </div>
Thankfully she has some solid friends to help her through.<br />
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The fallout from the past few years' health issues continues.<br />
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So this year is a catchup year. Make up lost ground. Get my health in order. Get the other sisters' health in order. I've cancelled all extra-curricular activities so I can get some sleep. I even took a Facebook holiday because I was feeling too obliged by commitments on there. I keep a check on things every day or two, but I'm pretty much not getting into any discussions etc. It's a drain on my resources, and I realised that if my social life exists online, Jacinta doesn't have one.<br />
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I've started (well, am attempting to start really, we've had a few false starts...) a weekly play group with a couple of other mums with similar interests. She's started a 2yo dance play class. These will be her educational peers. She's keeping up, in her own way. We'll be looking at swimming lessons for Jacinta and we're finally booked in for more NAET next week.<br />
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Looking at J, her speech is improving, and she's clever and hilarious. She understands a lot, but can't necessarily say it. There's a fair bit of yelling at the moment! We also finally had her hearing checked. She had a cold at the time and her ears were completely filled with fluid. They did the fluid check and the graph should have been a mountain. It was a calm ocean. Blocked. Good news is no permanent damage. It's all middle ear. We're going back in 3 months and we'll NAET and be dairy-free and try to get to the osteopath again before that. If we're still fluidy we'll be referred to an ENT for potential grommets. I'm not super keen on grommets. Her Dad had many many many operations to insert and fix grommets. I think more than 10.<br />
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She's basically presenting as slightly drunk at the moment. I'm hoping to sober her up by the end of the year. We haven't given up on the Institutes either! There are elements of the Institutes program in everything we do, but we're not officially working with them, though I'd like to be. I think it's a bite the bullet scenario. Might be a challenge now that Dad is working Mon-Fri a two-hour flight away.<br />
We'll see!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPSnjUUiizVHtIMxRBEIenTbAN22aDoWWLyNrlxCcOknM_HC7FobcZaqS8lxByr3sK5fzUEhfwgBcYSf2In4zdTJdHgW3tuZrWQrRnse40Zv2iWNNKgZ4aRLp5Y19EkqYQ9Iy7ySjKITA/s1600/IMG_1190.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPSnjUUiizVHtIMxRBEIenTbAN22aDoWWLyNrlxCcOknM_HC7FobcZaqS8lxByr3sK5fzUEhfwgBcYSf2In4zdTJdHgW3tuZrWQrRnse40Zv2iWNNKgZ4aRLp5Y19EkqYQ9Iy7ySjKITA/s320/IMG_1190.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And she's conquered her fear of the slide!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ubkeRc2fvrLN3eGINlrLpIY3AcVNUQBIvmSufnoXeWRQRYcvAPMIqmSrjE9KouEmr5RxxaoDAWr-dBCvB6V_70V3vccF9NpyVFAp6FEm1vS1YMr8-WbyBEn4mnk885bmo4IJeR3PFag/s1600/IMG_1006.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1ubkeRc2fvrLN3eGINlrLpIY3AcVNUQBIvmSufnoXeWRQRYcvAPMIqmSrjE9KouEmr5RxxaoDAWr-dBCvB6V_70V3vccF9NpyVFAp6FEm1vS1YMr8-WbyBEn4mnk885bmo4IJeR3PFag/s320/IMG_1006.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Everyone look at me!</td></tr>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-1359130625842477652015-11-05T05:35:00.000-08:002015-11-05T05:35:00.240-08:00The inevitable blog post about Stevie PayneI tried to stop myself. I tried, really I did.<br />
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I tried not to say anything about Michelle and Stevie Payne, but I just can't help it!<br />
<br />
<a href="https://www.racing.com/news/2015-11-03/stevie-payne-thrilled-by-sisters-cup-win">https://www.racing.com/news/2015-11-03/stevie-payne-thrilled-by-sisters-cup-win</a><br />
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On Tuesday Jacinta's future got a little bit better.<br />
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I was out at my church, doing some study. Being Melbourne Cup Day (because nowadays in Melbourne most of our Public Holidays are for sports...) there was some (soft) bubbly and some chicken and salad and many a fascinator, and the cup was on the screen in the auditorium.<br />
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I didn't think much of it. I had a couple of horses in the sweep (a far cry from days gone by, when I'd study every race and put money on the horse with the best name in each - just on that one day) so I watched it, and it was about the closest race I've ever seen. So exciting, it seemed like it was anyone's until the last 20 metres.<br />
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And then when the race was won, I heard the commentators talking about someone being the first female - I was pretty sure they didn't mean the horse. It became clear fairly quickly that this was the first female jockey to win the race, which dates back to the 1860s. Her name is Michelle Payne, and her racing pedigree is pretty long. She is one of 10 racing children of racing parents and the family has been in racing a long time.<br />
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So I was very happy to see that a woman had broken the glass ceiling of racing, a sport which is not loved by all, certainly not loved at all by some, but which has been quite soundly defended by a friend of mine who has worked around horses for many years, not in racing, so I'm not accepting comments either way on the rightness or wrongness of racing itself. I think I had a small tear of joy for her, and for my daughters.<br />
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Then as I watched, I saw that the person leading the horse around post-race clearly had Trisomy 21. I wasn't able to keep watching since I had children, namely one just-walking, lightning-quick 2 year-old to chase. Still, it became clear that this was the horse's strapper (basically a horse's PA for racing purposes), and for those of us who remember the movie Phar Lap (and have shuddered slightly on walking past his taxidermied body in the museum), we know that Tommy Woodcock was the no.1 person in that horse's life.<br />
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The strapper is so important a person in a racing victory that there is a trophy awarded, named for Tommy Woodcock, after each Melbourne Cup. This year, the winner of that trophy, was Stevie Payne, a 32 year-old man who has been working in the Ballarat stables for the last 10 years, and doing a darn good job by all accounts. He happens to be Michelle's brother.<br />
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I'm not sure at all how many of the people watching noticed him, or the diagnosis shining out through his facial features. I know that no-one was really watching the speeches at all, so no-one in that auditorium except Jacinta and me heard what he said in accepting his award. As I watched him, and after he had spoken, I was so overwhelmed by how life had changed in that 3-minute race.<br />
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If you were going for a Trisomy 21 Respect and Understanding awareness stunt, you couldn't have done it better. The whole country (with a few exceptions) watches that race. It is known as 'the race which stops a nation'. The whole country saw his horse win. Those of us in the country who watch the speeches saw a guy with Trisomy 21 get up and accept the trophy named after that legend, in exactly the same way the other guys accept it, for doing exactly the same job the other guys before him have done. No different.<br />
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His sister got up, was very gracious, thanked the right people and told the wrong people to 'get stuffed' (because it's not an easy ride when people are lobbying to get you replaced with a male rider and won't let you do your blinkin' job) and he got up, thanked the guys in the stables and everyone who came out to the race, hoped everyone has a great night and thanks very much.<br />
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In that moment, no-one could deny that here was a guy who had shown up, done his job, and walked away with one of the top awards for anyone in his mainstream profession. (This is one of the richest horse races in the world.)<br />
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And why did this make life a little better for Jacinta?<br />
<br />
Because in 2017 she might start preschool. In 2019 she will probably start school. The big-kids-to-be at her school were probably watching that race, and kids like them saw a guy like Jacinta get one of the trophies. One day when she starts school and the other kids see her, if they know of no-one else with T21, they'll associate her with winning. If someone tries to negate her abilities or think less of her, the ones who've seen the Cup will have this memory in the back of their minds, telling them that what they say is not true. Couple that with the girl winning a boy's sport, and this one little race did an awful lot for my young lady with T21's future.<br />
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So for that, I say "Thankyou, Michelle and Stevie Payne, for showing up to work on Tuesday and doing your job. This Mumma will be forever grateful."<br />
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We're getting there, one step at a time. (And I've finally stopped bursting into tears at the thought!)<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-49671025774518436982015-10-27T05:59:00.002-07:002016-02-08T01:54:05.957-08:00It's time we had a little talk....<span style="font-family: "arial" , "helvetica" , sans-serif;">Dear Parents,</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">October is Down Syndrome Awareness month.</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span>
<span style="font-family: "arial" , "helvetica" , sans-serif;">It is also:</span><br />
<ul style="background-color: white; color: #252525; font-family: sans-serif; font-size: 14px; line-height: 22.4px; list-style-image: url(data:image/svg+xml,%3C%3Fxml%20version%3D%221.0%22%20encoding%3D%22UTF-8%22%3F%3E%0A%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20version%3D%221.1%22%20width%3D%225%22%20height%3D%2213%22%3E%0A%3Ccircle%20cx%3D%222.5%22%20cy%3D%229.5%22%20r%3D%222.5%22%20fill%3D%22%2300528c%22%2F%3E%0A%3C%2Fsvg%3E%0A); margin: 0.3em 0px 0px 1.6em; padding: 0px;">
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Black_History_Month" style="background: none; color: #0b0080; text-decoration: none;" title="Black History Month">Black History Month</a> (United Kingdom)</li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Breastfeeding" style="background: none; color: #0b0080; text-decoration: none;" title="Breastfeeding">Breastfeeding</a> Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Dwarfism" style="background: none; color: #0b0080; text-decoration: none;" title="Dwarfism">Dwarfism</a> Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Domestic_Violence" style="background: none; color: #0b0080; text-decoration: none;" title="Domestic Violence">Domestic Violence</a> Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Dysautonomia" style="background: none; color: #0b0080; text-decoration: none;" title="Dysautonomia">Dysautonomia</a> Awareness Month<sup class="reference" id="cite_ref-44" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-44" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[44]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Eczema" style="background: none; color: #0b0080; text-decoration: none;" title="Eczema">Eczema</a> Awareness Month<sup class="reference" id="cite_ref-45" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-45" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[45]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=Fair_Trade_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="Fair Trade Month (page does not exist)">Fair Trade Month</a><sup class="reference" id="cite_ref-46" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-46" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[46]</a></sup></li>
<li style="margin-bottom: 0.1em;">International Walk to School Month (Canada)<sup class="reference" id="cite_ref-47" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-47" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[47]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=LGBTQ_History_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="LGBTQ History Month (page does not exist)">LGBTQ History Month</a> (U.S.)<sup class="reference" id="cite_ref-48" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-48" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[48]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Lupus" style="background: none; color: #0b0080; text-decoration: none;" title="Lupus">Lupus</a> Awareness Month<sup class="reference" id="cite_ref-49" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-49" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[49]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Breast_Cancer_Awareness_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Breast Cancer Awareness Month">National Breast Cancer Awareness Month</a></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Bullying_Prevention_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Bullying Prevention Month">National Bullying Prevention Month</a> (USA)</li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Cyber_Security_Awareness_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Cyber Security Awareness Month">National CyberSecurity Awareness Month</a><sup class="reference" id="cite_ref-50" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-50" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[50]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Dental_hygiene" style="background: none; color: #0b0080; text-decoration: none;" title="Dental hygiene">National Dental Hygiene Month</a><sup class="reference" id="cite_ref-51" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-51" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[51]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Disability_Employment_Awareness_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Disability Employment Awareness Month">National Disability Employment Awareness Month</a><sup class="reference" id="cite_ref-Heritage_Month_Guide_9-3" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-Heritage_Month_Guide-9" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[9]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Domestic_violence" style="background: none; color: #0b0080; text-decoration: none;" title="Domestic violence">National Domestic Violence Awareness Month</a></li>
<li style="margin-bottom: 0.1em;">National Energy Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=National_Fire_Prevention_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="National Fire Prevention Month (page does not exist)">National Fire Prevention Month</a><sup class="reference" id="cite_ref-52" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-52" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[52]</a></sup></li>
<li style="margin-bottom: 0.1em;">National Infant Loss and <a href="https://en.wikipedia.org/wiki/Miscarriage" style="background: none; color: #0b0080; text-decoration: none;" title="Miscarriage">Miscarriage</a> Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a class="external text" href="http://1.usa.gov/1OOzTGp" rel="nofollow" style="background: linear-gradient(transparent, transparent) 100% 50% no-repeat, url(data:image/svg+xml,%3C%3Fxml%20version%3D%221.0%22%20encoding%3D%22UTF-8%22%3F%3E%3Csvg%20xmlns%3D%22http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%22%20width%3D%2210%22%20height%3D%2210%22%3E%3Cg%20transform%3D%22translate%28-826.429%20-698.791%29%22%3E%3Crect%20width%3D%225.982%22%20height%3D%225.982%22%20x%3D%22826.929%22%20y%3D%22702.309%22%20fill%3D%22%23fff%22%20stroke%3D%22%2306c%22%2F%3E%3Cg%3E%3Cpath%20d%3D%22M831.194%20698.791h5.234v5.391l-1.571%201.545-1.31-1.31-2.725%202.725-2.689-2.689%202.808-2.808-1.311-1.311z%22%20fill%3D%22%2306f%22%2F%3E%3Cpath%20d%3D%22M835.424%20699.795l.022%204.885-1.817-1.817-2.881%202.881-1.228-1.228%202.881-2.881-1.851-1.851z%22%20fill%3D%22%23fff%22%2F%3E%3C%2Fg%3E%3C%2Fg%3E%3C%2Fsvg%3E) 100% 50%; color: #663366; padding-right: 13px; text-decoration: none;">National Information Literacy Awareness Month</a>(Ironically, that one under all that blue scribble is National Information Literacy Awareness Month)</li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=National_Italian_American_Heritage_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="National Italian American Heritage Month (page does not exist)">National Italian American Heritage Month</a><sup class="reference" id="cite_ref-Heritage_Month_Guide_9-4" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-Heritage_Month_Guide-9" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[9]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Hispanic_Heritage_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Hispanic Heritage Month">National Hispanic Heritage Month</a> (U.S.; September 15 to October 15)</li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=National_Outdoor_Lighting_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="National Outdoor Lighting Month (page does not exist)">National Outdoor Lighting Month</a><sup class="reference" id="cite_ref-53" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-53" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[53]</a></sup></li>
<li style="margin-bottom: 0.1em;">National Pharmacy Month</li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=National_Physical_Therapy_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="National Physical Therapy Month (page does not exist)">National Physical Therapy Month</a> (USA)<sup class="reference" id="cite_ref-54" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-54" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[54]</a></sup></li>
<li style="margin-bottom: 0.1em;">National Pit Bull Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/National_Work_and_Family_Month" style="background: none; color: #0b0080; text-decoration: none;" title="National Work and Family Month">National Work and Family Month</a><sup class="reference" id="cite_ref-55" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-55" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[55]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="new" href="https://en.wikipedia.org/w/index.php?title=Pastor_Appreciation_Month&action=edit&redlink=1" style="background: none; color: #a55858; text-decoration: none;" title="Pastor Appreciation Month (page does not exist)">Pastor Appreciation Month</a></li>
<li style="margin-bottom: 0.1em;"><a href="https://en.wikipedia.org/wiki/Polish_American_Heritage_Month" style="background: none; color: #0b0080; text-decoration: none;" title="Polish American Heritage Month">Polish American Heritage Month</a></li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Raynaud%27s_Syndrome" style="background: none; color: #0b0080; text-decoration: none;" title="Raynaud's Syndrome">Raynaud's</a> Awareness Month</li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Rett_Syndrome" style="background: none; color: #0b0080; text-decoration: none;" title="Rett Syndrome">Rett Syndrome</a> Awareness Month<sup class="reference" id="cite_ref-56" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-56" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[56]</a></sup></li>
<li style="margin-bottom: 0.1em;"><a class="mw-redirect" href="https://en.wikipedia.org/wiki/Selective_Mutism" style="background: none; color: #0b0080; text-decoration: none;" title="Selective Mutism">Selective Mutism</a> Awareness Month<sup class="reference" id="cite_ref-57" style="font-size: 11.2px; line-height: 1; unicode-bidi: -webkit-isolate;"><a href="https://en.wikipedia.org/wiki/List_of_commemorative_months#cite_note-57" style="background: none; color: #0b0080; text-decoration: none; white-space: nowrap;">[57]</a></sup></li>
<li style="margin-bottom: 0.1em;">Spina Bifida Awareness Month<br /><br /><span style="font-family: "arial" , "helvetica" , sans-serif;">October sure is a busy month!<br /><br />Given that you're reading this blog, I'm going to assume you're aware that in my opinion, Down Syndrome is an outdated term with outdated stereotypes, and I expect Trisomy 21 (where the symptoms are being redefined) to replace it by the time Jacinta is old enough to correct people herself. </span></li>
</ul>
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<span style="color: #252525; font-family: sans-serif;"><span style="font-size: 14px; line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="font-size: 14px; line-height: 22.4px;"> </span><span style="line-height: 22.4px;">I'm also going to assume that you're aware about the people with Trisomy 21 who read, drive cars, have valid opinions, work regular jobs, get married, have children, graduate from university, generally carry on with life without any ado. Also, of course, I assume you're aware of the growing number of child and adult models and actors generally impressing people out there. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">I'm also assuming you to be aware of my opinion on the striped socks thing. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">What I am not going to assume, however, is that you are aware of the "oxygen mask" phenomenon.<br />This is the phenomenon well known to airline staff, the one where parents are so intent on getting their children's oxygen masks on that they don't get the oxygen they need, and everyone suffers, the child included. It's so important that they tell us every time we fly, and we listen and we say to ourselves, "of course, that makes perfect sense". And then we give birth to a child with health issues and do the exact opposite. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">When your child is born with health issues, you immediately consult your practitioner, and usually very specialised ones, to find out what needs to be done to prevent permanent damage to your child's health, such as brain damage, hearing loss or dying, for example. You don't think twice about it. Your needs are pushed aside. You're the big one, the fully grown one with functioning bone marrow and a fully formed heart and lungs. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">This is how it always goes, because we'd do it for any of our children in a time of crisis. The crisis is dealt with and you go back to a more relaxed pace (not that I'm insinuating that anyone's actually relaxing here) but it's just a bit back from frenetic racing around or intense standing still, constantly on your guard.</span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">The last three years have been, in my house, a bit ridiculous. It started with the sudden turn in my husband's health when I was about 6 months pregnant with Jacinta (and being pregnant with two other children demanding your attention isn't fun and games to begin with), through her initial hospitalisation, through the 'let's keep the weight graph trending upwards' (breastfeed, express, tube feed, repeat, every three hours - with a 4-hour window at night) before her heart surgery, through the IAHP training and the attempts to get the household in the one place at the one time to get co-ordinated to start a program, through the constant vigilance while the bleeds and bruises and tiredness were showing her illness despite the Dr's reticence to put her through a blood test (ha ha, in hindsight), through the diagnosis and sudden admission and weeks on end in the hospital, the family separated more than ever before, having to sneak out for a couple of hours to be there for my middlest's first day of kinder, having to see my two older girls and husband off at the airport so they could represent us all at his brother's wedding in England, staying home for 9 months to avoid catching anything at a gathering or at the shops, through being told on the day we were released from our last leukaemia-related admission that she needed surgery before the end of the year, through the waiting and waiting, and getting pushed back and putting everything on the calendar in very light pencil because you just can't commit, through the winter admissions while she was struggling to breathe with a bit of croup, through the second heart surgery with its twists, turns and sleepless nights like never before. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">This all finished about 3 months ago, and I kind of feel like I'm still there, in all of it at once. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">The thing is, about a year ago I had a cold. Not that badly. I think I had one day which knocked me flat, but after that it was just a normal cold. That illness sapped my energy right out. It gave me dry eye also. I went to the Dr about the eyes and the tiredness a few months later and she wrote up the eye drops and said I was probably tired because I was still breastfeeding. I hadn't considered this, so I considered it. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">When you haven't got time to think, and keep forgetting to make your children's appointments, you have Buckley's chance (none) of getting any appointments booked for yourself. Having mental fog and tiredness doesn't help either. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">I got to a point of being sick of it and deciding to look for someone who could get to the bottom of it so I can sort it out. A friend recommended a Dr in New Zealand. I booked in for a phone call. There was a 2 month wait. I waited. We chatted and she suggested I see another Dr about an hour from me for bloods and then contact her again if I still wanted to see her. I booked in with that Dr. Another 2 month wait. I went along and she had some very interesting suggestions re my health issues and sent me for bloods. On my return a few weeks later I found that she was spot on, my zinc and B6 were super low, my iron wasn't brilliant, nor was my magnesium. I had also requested to be tested for a gene mutation called MTHFR and the bloods confirmed that I had it from both my parents, meaning that my ability to methylate folate (which bodies do) was impaired by 70% (and that's as badly as it can be). Bloods also showed that my adrenalin was basically nonexistent. (For this to show up on bloods means that your adrenal glands are in serious trouble.) </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">I'm in the process now of supplementing to sort out these, which is tricky apparently, when you try to supplement zinc with poor adrenal function. There are good days and bad days....</span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">Still, my situation is fairly ordinary. Another friend of mine was diagnosed recently with breast cancer - a really aggressive lump that blew up in size in the two weeks from seeing a Dr to getting it out. Thankfully it seems to be all out, but it's a scary situation. This is a Mum who's had a ridiculous amount to deal with, none of it medical, up late finishing documents for lawyers etc. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">There are several others I know of also who have had to rest their adrenals so they can begin to function again. These parents are just exhausted, maybe just from worry that they're not doing enough, maybe from staying up too late blogging or chatting with other parents on facebook, maybe from tension at home or trying to be the perfect mother to their other children, one who can do it all - because they always used to...</span></span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;"><br /></span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;">I know you are aware that your child is as unique, in all ways, as all children are. There is no one defining characteristic for all people with Trisomy 21, except that they have a trisomy on the 21st chromosome - and I don't know anyone carrying a copy of their genetic tests around to show people. </span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">I know you are aware that the possibilities for your child are endless, and the only definite thing limiting them is the same as for anyone else, the idea from their mind or someone around them that they are limited. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;">Please also be aware that you have to apply your oxygen mask first. I'm not going to insult you by suggesting you need to go for a facial or some other 'me' time while your child sits there at home having not met his potential yet. I am suggesting though that you go and get a checkup. I am suggesting that you take care of your diet and draw a line in the sand at 11 - or even 10pm and go to bed. I am suggesting that you confront any issues you may be having with your partner, your friends, your life in general, and sort them out sooner rather than later. I am suggesting that you (perhaps bit by bit) regain control of your life and be the one in the driver's seat in whatever increasingly bigger way you can. </span></span></div>
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<span style="color: #252525; font-family: sans-serif;"><span style="line-height: 22.4px;"><br /></span></span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;">If you've dropped the ball on your own basic wellbeing, now is the time to do something to sort it out. Not tomorrow, now. I give you permission. Don't be the guy who misses the signs and winds up so unwell your child can't have you around to take care of them. Be the healthy one, who goes on and on because they have a check now and then and make healthy life choices. </span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;"><br /></span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;">Now, I'm off to look up Dysautonomia....</span></div>
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<span style="color: #252525; font-family: sans-serif; line-height: 22.4px;">NO, I'm GOING TO BED!! </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-65704559366245363322015-10-11T06:13:00.000-07:002015-10-11T06:13:14.115-07:00Heart Surgery - Take #2<br />
We didn't get cancelled.<br />
<br />
In we all went, after the obligatory pre-op 5.30am shower and into clean clothes.<br />
Reported in at 7am and went straight through to see the Anaesthetist. He spent a few minutes double-checking re her ongoing virus and declared that she would, indeed be ok for surgery.<br />
<br />
Through we went, got a photo in her cute little surgical gown this time, after thorough antiseptic wiping of her skin. I got to go in with her this time so I gowned up too. It seems that once you've got into a habit of accompanying your child into the theatre for anaesthetising, it's something they're inclined to continue. They even let her take a toy in. Anything to keep the blood pressure down, I think!<br />
<br />
And off we went, let the big girls have McDonalds for breakfast because it was there and we were all fasting! Our lovely brother and sister in law live nearby and kindly got up early to invite us over for tea and toast, so we happily hung out there for a bit. We had also been dangling the Aquarium carrot over the heads of the older two so that was on the list and also we found that there was a room at Ronald McDonald house, which we needed to claim by about midday.<br />
<br />
So we dropped off our stuff, drove in to the aquarium, couldn't park very easily and it had got to 2pm already. I was getting toey since the anaesthetist had said the surgery would be at least 4 hours, rather than up to 7 or 8. We were at 6 hours at this point and I'd already accidentally missed one call from a private number which thankfully hadn't been the hospital. I decided to drop my husband off with the big daughters and drive on back. That way I could express some breast milk to keep my supply up. I figured they'd put it down the nasogastric tube while in intensive care as well.<br />
<br />
So with that done and dusted, about 3pm, I decided I really could not ignore the call of the Gianduja chocolate they sell at the Chocolate Box (who aren't paying me any money) any longer. It's my biggest chocolate weakness, and that's saying something. They sell it at the Women's, which is down the road from the Children's. So Izz was off for a walk. I'd stopped worrying that checking my phone every thirty seconds was abnormal so I had it in my hand the whole journey.<br />
<br />
By the time I got up there, attained my quarry and was heading back it was 3.55 and I got the call. The surgeon was very brief. It was a long surgery. The repair had to be done twice. The heart was now good. It wasn't perfect, but it was good. The recovery might be a little slower since it was long but it was all good. She'd be in intensive care in an hour or so.<br />
<br />
I should have remembered that the last time he operated he told me that she'd be in intensive care in an hour or so. It was three hours that time until I saw her. Still, I killed an hour waiting in the right place this time and the rest of the family arrived. After a bit more than an hour I went up to intensive care and checked. No show. The lady on the desk said we'd probably see her go past, so we waited in a slightly different spot so both access doors from theatre were covered.<br />
<br />
We saw a small infant's crib and I thought that was too small for Jacinta, but I gave it 10 minutes or so and checked. Nope. We went back and waited some more. Then I went to the family lounge for a minute, during which time my eldest let herself into intensive care thinking I'd gone that way. She found out that Jacinta still hadn't come in. By this time it was well after 5.30. Finally at about 5.45 I saw a cot wheeled through and I figured that must be her.<br />
<br />
I gave it 10 minutes and went up to confirm that it was her. The ward clerk said it was but said it'd be a while til she was ready for visitors. She said about 30 minutes and that she'd come and get us. We decided the girls were well and truly ready for bed so my husband took them back to our room at Ronald McDonald house. I waited some more. Finally, about 7.30 she was ready. (That's 3.5 hours after I got the phone call...it takes as long as it takes!)<br />
<br />
She looked ok, considering.<br />
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Now this is the point in the narrative where I confess that I completely dropped the blogging ball.<br />
I was writing this at Ronald McDonald house, I think. We were all staying there while she was in Intensive Care and then I moved out once she made it to the ward. I came down with a pretty nasty cold on about day 3 which took me about a week to recover from. She was sedated for about 5 days.<br />
<br />
The trouble was that her lungs collapsed. Maybe it was one, or both, I don't remember. They checked the lovely suction bits and found haemophilus bacteria. They didn't mention which type. She was started on antibiotics and by day 5 they were able to take out the ventilation tube. The tricky thing with the sedation is that the morphine may have helped with the pain but had absolutely no sedative effect whatsoever. They had to sedate her with another drug, midazolam.<br />
<br />
Now this is the kind of thing about which I am really ambivalent. I am really, really against the use of psychotropics on any member of my family. You would have to force me physically to agree, and I might still not agree. Except when we're dealing with the heart surgery, it's fairly life or death in a lot of places. When she was in the surgery I'm pretty sure (from a couple of comments made) that she had to be jumpstarted once or twice, and I have the feeling that once again they were not going for perfect in the end because they were just going for a living, breathing patient at the end of the operation. In intensive care there are a dozen syringe drivers going, with different meds at different doses and they have a routine, a system for how things happen and when. It pretty much runs like clockwork. Even the tricky ones have a system and a usual practice for handling the tricky bit.<br />
<br />
In this kind of situation, you're looking at an error being potentially lethal. A wrong dose of one of these meds can cause brain damage etc. My working policy is 'Just don't mess with the cardiac unit, let them get on with it.' So I came in to find her on the hypnotic, midazolam, which is in fairly common use thesedays in dentistry, day procedures etc. to help the patient relax and to induce amnesia regarding the whole procedure. Some people might prefer to forget, but the trouble with that is that when you want to use Dianetics to uncover past moments of pain and unconsciousness which might be negatively affecting your health or mental state, these obscured ones can be awfully tricky to locate.<br />
<br />
So we spent a lot of very silent time in that room, for several days. Still holding her hand and stroking her gently when she needed us. She was in PICU for 4-5 days. One of her lungs had collapsed so she couldn't get off the ventilator very easily. It turned out she had a haemophilus infection in the lungs, which hadn't been causing an issue up to this point. (And since vaccination was never mentioned I have to assume it wasn't the HiB strain.)<br />
<br />
So from Fri to Tues she stayed in PICU, doped to the eyeballs. We stayed in Ronald McDonald house and went to and fro. I came down with a super nasty cold, which I spent about 18 hours in bed fixing as best I could before she was sent to the ward. (Lots and lots of handwashing for the next few days.) On about day 5 they decided she was doing well enough to come off the ventilator (extubating, they call it) and they did this pretty fast. They disconnected the sedatives then whipped it out and got the nasal prongs on and crossed fingers that they would stay on. All went well and she got out for cuddles.<br />
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The recovery was slow. The main trouble was that she was doing fine, but they had to wean her off the morphine. The morphine was not sedating her though. It turns out that it's not uncommon for T21 patients to get hyper with morphine, rather than sleepy. So we had many nights of a morphine dose at bedtime and very little sleep whatsoever. The body can really react badly to going cold turkey so they had to keep giving it, even though she tolerated it so badly.<br /><br />Mostly the admission was a lot of very little sleep. At least one night I gave up at 4am, turned on the movie channel and let her sit up watching TV while I attempted to sleep.<br />
<br />
Then on about day 7 on the ward they decided that the ends of her wound were looking a bit wet and yucky so they took her back in for a debridement. I told the anaesthetists that she was not tolerating the morphine, so they went with fentanyl, which was 5x worse! After the fentanyl, and possibly because she was so angry at going back in again, she refused to talk to me. This is the first time ever that she has not been on speaking terms with me. It was scary!! I wasn't allowed to go near her.<br />
<br />
Thankfully she was more herself after a sleep. After a day or so they let us wander the hospital a little.<br />
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<tr><td class="tr-caption" style="text-align: center;">That's orange juice - not coke!<br /></td></tr>
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They kept us in for a few more days on antibiotics for the yucky looking wound and finally sent us home at the end of the week - about day 15 all up. Meanwhile two friends of ours had also appeared on the list, been done, made it onto the ward and one had been discharged in about 5 days all up! (No fair!) The other also made it out within about 5 days or so, just after us.<br />
<br />
The physio at the hospital went from helping her with her chest recovery post-op to talking about her walking and even (though I told her it was not the plan and would not be necessary) phoned our early intervention and requested the physio come out to the house to see Jacinta (who was pretty much back to where she was before surgery already). Thankfully the EI case manager was happy to stick to the original plan, especially since the last time the physio came it did not end well.<br />
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<tr><td class="tr-caption" style="text-align: center;">Walking, aaaand..... pigtails!! </td></tr>
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<br />
And so she's fully walking now. We're in a place where we're still on a 'just in case' dose of diuretic but sometimes I forget and I don't notice a difference so I'll be surprised if he keeps it up after our next cardiac visit. This place also enables us to think about the possible causes for the speech regression. We're getting an audiology check because the antibiotics may have caused some damage.<br />
<br />
It's a little strange to be done. Ever since about September 2013 I've been on the lookout for physical symptoms and not making plans. Now there is no reason not to put things in pen on the calendar, and the calendar is fast filling up!!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-20395502654279829382015-07-23T05:20:00.002-07:002015-07-23T05:20:42.152-07:00Surgery Lotto!So I can't remember how much I've told you about the heart surgery that we've had pending for some time - in fact I think it just ticked over a year a couple of days ago.<br />
<br />
I could check back, but frankly I can't be bothered, so I'm going to assume I last filled you in about when her platelets were low for a minute then righted themselves.<br />
<br />
We were just hanging around waiting, waiting, not planning anything. First you'll remember it was meant to be before the end of the year - last year. Then it was decided by the surgeon to wait 6 months after chemo until the blood counts had recovered. This meant more like Jan but we had to wait until the surgeon came back from holidays so that would be more like the end of Feb.<br />
<br />
Then of course the end of Feb and March came and went and we were told that because intensive care had been so full, and they need a spare intensive care bed before they can operate, the list had not been moving. Then they did a scan and found the aorta was thickening a bit which can narrow the passageway. This bumped us up the list a little.<br />
<br />
About the end of April we got a call to come in for a day of 'pre-admission'. This is where they do the official bloods, scans, information, consent etc so it's all ready to go. These tests etc are valid for 4-6 weeks. We were then on alert, expecting the surgery to happen within about 4 weeks...and, nothing.<br />
<br />
I had pretty much given up expecting a call when I got a call to say that Jacinta had made it to the top of the list. It felt like when you're waiting on the phone and you hear "your call has progressed in the queue", or even on those modern ones that tell you, "you are second in the queue" etc. The lady in the office who rules the surgery lists was checking our availability for the following week and the week after. Things were getting exciting. This was about the middle of June.<br />
<br />
So I was checking in with her every couple of days. Then Jacinta had a runny nose which went away again, and they can't be sick with a cold if they're having bypass surgery. I was to ring back on the Monday to work out a day for that week. Instead I rang back on Monday to say that she had the biggest green snotty nose I'd seen in some time, and she wasn't up for surgery. Later that week we had a follow-up with the cardiologist and they said we'd need to wait 2-3 weeks.<br />
<br />
By this time I was kind of going a little spare, since life had been on hold for the better part of a year. We'd been trying to book life in and we couldn't pin ourselves down to a date. So once again we resigned ourselves to waiting.<br />
<br />
The next exciting thing after she nearly got better again and then worsened was that the weather turned really cold and she got croup. Now throughout the cold virus she'd been working harder than usual with her breathing. We've had croup before and managed, but croup on top of heart failure (which we remember is not when your heart stops, but when it is failing to some degree) is a tricky business.<br />
<br />
Here she was, nearly better, I was about to ring back the Lady of the List and report that we were better, and instead she suddenly worsened to the point that I rushed her into hospital for help with breathing. She was coughing and spluttering and just couldn't get a good breath in. We stayed overnight and with the help of a dose of diuretics got better enough to go home again, with instructions to watch and come in again if she worsened.<br />
<br />
While in there they had taken swabs of the mucous (lovely!) and tested it for usual viruses. All were negative. Having ruled out such viruses as RSV (which is a nasty cold that can turn into bronchiolitis in already sick children), the surgeon started talking about operating regardless of the cold she has, since she might not avoid sickness and wind up in ICU from the sickness. So they sent us home to await a call.<br />
<br />
I thought she would get better now, since she'd been sick now three weeks, which is quite long enough for a cold. Still, she kept on with the runny nose and the noisy coughing. Once again, the following week we had to report in again, with a croupy cough combined with increased work of breathing (which is fancy talk for puffing and panting).<br />
<br />
I had called the List Lady before I took her in to ask her advice and she made noises suggesting that if we were on the ward long enough we might make it onto the inpatient surgery list. Apparently there was no room on the list for this week so it would be at least next week or the week after before there was a spot. Happily for our immediate sanity, but sadly for the cause of getting the surgery done, they agreed with my suspicion that the heart needed support until the surgery and sent us home on a dose of diuretics. Surgery hopes once again dashed!<br />
<br />
So that was yesterday that we arrived home, and I decided to call up today to see what the lie of the land was for the next couple of weeks. The List Lady said that she'd see what the cardiologist thought about proceeding while she was unwell and she'd call me back today or tomorrow. She called me back within a couple of hours to check exactly what kind of cough Jacinta has, because there's a spot on the list for tomorrow and if the anaesthetist is happy to go ahead, she can have the surgery.<br />
<br />
So all of a sudden we're all systems go! Straight to bed to get up again for a middle of the night feed, then fasting completely from 6am. Arrive at hospital at 7am and if they're all happy, surgery at 8am is my assumption. This afternoon has been a whirlwind of organising. We're keeping the family together tomorrow. After all these hospital admissions we've had over the last year it's cruel torture to expect any member of the family to be on their own while Jacinta's in surgery, especially since it's very much a known quantity and when you're 7, you have a definite opinion on what kind of support you think your sister needs.<br />
<br />
The surgery will take longer than the last operation was originally supposed to take. Going over the scar tissue is a very delicate business so they take their time. Also finding veins is much harder the more you do it, so that can take a while. So they've told us to get out of the hospital. It'll basically be a work day that we have to kill, so we'll see how much fun we can get up to!<br />
<br />
And as for feeling like I've got a million things to organise and we're forgetting stuff, and trying not to feel terrible about the operation etc. well, it's there of course. I'm making a conscious decision to chill. I'm going to bed, I'll wake myself up for a bit, go back to bed, try to get a decent amount of sleep, and carry on tomorrow. Let's see how we go! (And fingers X we don't get cancelled....)<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-587987529716680225.post-6890797653873315512015-07-06T03:17:00.002-07:002015-07-06T03:17:29.717-07:00Karen Gaffney's TedX talk.Just this.<br />
<br />
<a href="https://www.youtube.com/watch?v=HwxjoBQdn0s">https://www.youtube.com/watch?v=HwxjoBQdn0s</a><br />
<br />
You're welcome.Unknownnoreply@blogger.com0