tag:blogger.com,1999:blog-19881231181970671832024-03-13T16:10:49.643+10:00Bloggers SyndromeKiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.comBlogger47125tag:blogger.com,1999:blog-1988123118197067183.post-58029553916561890512011-05-07T10:54:00.000+10:002011-05-07T10:54:11.744+10:00A year of horror, a new business, and a growing toddler....Well, this year has been eventful so far if nothing else.<br />
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First we had the Qld floods, followed by Cyclone Yasi. That was January. February saw the Christchurch Earthquake. My 2 oldest girls live in Christchurch, so seeing the news flash, while in the waiting room at the local hospital, saying 'mass fatalities' was pretty scary!! Took about an hour from then to get a text from Alicia saying they were both okay! Sara had been in her first Latin lecture at university when it hit. After the uni closed down for a month or so, lectures re-started in tents! They are still getting aftershocks (in fact, they never stopped after the September 4 quake), and personally, as a mum, I find it pretty scary having kids living there.<br />
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March it was the massive quake, tsunami and nuclear fallout in Japan. April there were masses of tornadoes in the south of the USA. We are only a week into May. I hope and pray we don't hear more bad news!!<br />
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Here, in little old Roma, we have been through a couple of more floods ourselves. In March we went to the Gold Coast for a week to see my sister, Sonia while she was over from New Zealand. On the way home, travelling at 90km/h in the dark, and towing a trailer, we hit a wall of water, and got swept across the road. VERY SCARY!! We then got to the Bungil Creek (the one that keeps flooding Roma), and were one of the last vehicles (and only cos we were in the 4WD) that was allowed through for the night. Then a couple of weeks ago, we went down to Brissy for the day to get some of our stuff out of storage. We left Samara at home with the bigger girls to spare her a 14 hour round trip in the car. Then the floods hit again! We didn't get home til 2 days later!!!<br />
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Feeling the pennies pinching through all the ups and downs of the last few years (and months in particular), I decided I needed to try and do something about our finances. So I revamped my facebook page www.facebook.com/justjuniors, and started selling a range of clothing, and also promoting my t-shirt designs to raise disability awareness.<br />
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I am now selling my designs on a massive range of products through two sites. www.zazzle.com.au/justjuniors and www.cafepress.com.au/justjuniors. Feel free to come and have a look, comment, or better still, buy! LOL.<br />
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I have also started a blog about disability awareness, and hope some of you will come and join in, and guest blog your stories. www.just-juniors.blogspot.com<br />
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Then there is the toddler. The little princess that got me blogging in the first place! She is growing like a little weed! Here she is in one of 'my' t-shirts and a gorgeous tutu I had made for her for World Down Syndrome Day.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjswhbWi0KvGOvpuVT-SuX4x5YjtknaR9KstHEQjvfozDDGcBUxZBBko2bwKPM4vWtrcZ-UEpJu9ME534gXZKPwxozvtEVqnNLb2N6vaDt5K261WX21WIwL7xiyNsY2wMSnGq3CL-WeFR7q/s1600/ds+awareness.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjswhbWi0KvGOvpuVT-SuX4x5YjtknaR9KstHEQjvfozDDGcBUxZBBko2bwKPM4vWtrcZ-UEpJu9ME534gXZKPwxozvtEVqnNLb2N6vaDt5K261WX21WIwL7xiyNsY2wMSnGq3CL-WeFR7q/s400/ds+awareness.bmp" width="267" /></a></div>She is learning more and more words, and even starting to string some simple phrases and sentences together. Although, she still prefers using Makaton signs. She especially loves signing animal names! Her favourite word is 'dowaty', and even if we tell her to say dinosaur, she says 'dowaty'! She has also started saying 'henwywywy' for Henry the Ocotpus! Oh, well, as long as she knows the important words!! LOL<br />
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She is sick at the moment. Has had a couple of nights in the hospital, and last night was up with me from 4am! She may end up back up at the hospital tonight, as she is finished her round of predimix (baby prednisone), so won't have that extra protection.<br />
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And me? Well, I'm just plain tired! Too tired to even think of anything else to share with you. So for now, I'll luv ya and leave ya!Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com2tag:blogger.com,1999:blog-1988123118197067183.post-43279991590787162952011-01-17T07:41:00.002+10:002011-01-17T07:45:46.097+10:00Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-48614706511511449282011-01-17T07:16:00.004+10:002011-01-17T07:40:20.787+10:00Water, Water, EverywhereWell, the last couple of weeks have certainly been eventful in the state of Queensland.<br /><br />The state has seen the worst floods in history. 75% of the state has been declared a disaster zone. That is an area roughly the size of 6 average sized states in the USA. More than 4 times the size of my homeland of New Zealand. This thing is HUGE!<br /><br />Here, in Roma, we have been blessed. Our place flooded twice, but it was so minor compared to what others have been through. We were living in a highset house, so the water only really affected the laundry and the storage under the house (and we moved things up onto the verandah). Mind you, even with moving stuff out of the way, we had 2 prams and an exersaucer go mouldy, just because it was so darn wet!! The water also meant we couldn't get stuff out of the house for the move, but hey, it was still not that bad. The only other problem we have had is lack of food in the supermarket. People went into panic-buying mode. And the shelves in Woolworth were quickly emptied. You see that sort of stuff on TV, but it was quite eerie seeing it happen before your eyes!<br /><br />As if all the flooding wasn't enough, disaster hit Toowoomba a week ago, with what has been described as an inland tidal wave. This city, which sits on top of a hill received so much rainfall that a 2 metre high wall of water swept through the inner city, taking cars, furniture, and sadly - people, with it. People were out shopping one minute, and swept to their deaths the next.<br /><br />Being on a hill, the inevitable happened next. The flood waters rushed down the hill, gaining speed as they went. The Lockyer Valley was all but wiped out. Entire houses were swept away. More people went with them. Some may never be found. Others are being found on a daily basis as the search for bodies goes on.<br /><br />From there, the flood waters swept through the city of Ipswich and on into Brisbane. Many thousands have been left with nothing. Some houses will be able to be rebuilt. Others will not. Some people will be able to rebuild their lives. Others will not.<br /><br />Many people will not even get insurance payouts, because their policies don't cover floods. And with so many people claiming, the insurance companies will be fighting to stay afloat, and are likely to be very tough on people.<br /><br />In amongst all this heartache and ruin, is a family I have met through our wonderful network of Down Syndrome parents. They have two young children, Brodie who has DS, and Harvey. I would like to do something to help them. They have already had it pretty tough, and having to replace their belongings, and rebuild their lives won't be easy.<br /><br />I know there are going to be a whole heap of sob stories out there at this time. And I know we can't all give to everyone. Which is why I want to choose this one family. With one family to focus on, we can really make a difference. We cannot change the world, but we can change things for this one family.<br /><br />There are also people out there who have people fundraising on their behalf who are trolls. People who are getting people to raise money for them when they haven't even met the people in question. Many of you will have had experience with the person in particular I am thinking of. But I can tell you, Ange has not asked for anything. She is a real person, who I have met in person. She would probably refuse help if she knew I was doing this, saying there are others worse off. But that doesn't change the fact that she needs this. And I want to do what I can for her.<br /><br />If you are able, even if it's only a few dollars, please chip in at the link on this page, and when we have enough to make a difference, I will get this money to you, and let you know how this will specifically be helping her. I am sure my IRL friends from the DS community will be able to keep tabs on it all and ensure she receives the money (less any paypal fees, unless these are small enough for me to cover myself - I have no idea what they charge) that is given.<br /><br />Thank you. And please, even if you can't give financially, remember this family, and the others in Queensland in your prayers.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-90590241550660754932011-01-17T07:16:00.001+10:002011-01-17T07:16:37.668+10:00<object width="250" height="250"><param name="movie" value="http://widget.chipin.com/widget/id/2d1394df8837d67c"><param name="allowScriptAccess" value="always"><param name="wmode" value="transparent"><param name="event_title" value="Angela%20Logan"><param name="event_desc" value="QLD%20Flood%20Victim"><param name="color_scheme" value="red"><embed src="http://widget.chipin.com/widget/id/2d1394df8837d67c" flashvars="event_title=Angela%20Logan&event_desc=QLD%20Flood%20Victim&color_scheme=red" type="application/x-shockwave-flash" allowscriptaccess="always" wmode="transparent" width="250" height="250"></embed></object>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-68366680622164879812010-12-30T09:59:00.002+10:002010-12-30T10:26:45.664+10:00On the last 4 monthsWow, I didn't realise I hadn't been on here since September! Before the big move to the middle of nowhere! Life has been so busy, that I simply never seemed to have the time to come over here.<br />And, now, when I finally sit down to write, I have a certain 11 year old standing over me wanting me to spell every single word of a letter to her friend out to her. Well, not quite EVERY word, but it sure seems like it!! No rest for the wicked eh?!<br />Our move to Roma was a bit of a disaster. One of the wheels fell off the caravan, before Michael and Christiana had even left the outer city limits of Brisbane. The RACQ towed them to safety, and they had to drive out here without it, arriving at 4am the next morning! The following week, they drove down to get the now fixed caravan, and got as far as Toowoomba before another wheel fell off the same side! This time, they managed to tow it to a repair place by just going really slowly! (it's a twin axle caravan). They left it with the mechanics, and this time asked them to check EVERYTHING!! Went back down the following weekend and finally got it home. All in all, it cost us $2000 we hadn't planned on!<br />We have found Roma to be a very friendly town for the most part. Having a child with a disability is actually a real advantage when you are somewhere new! Through Samara we have met a lot of people, and people I have no idea of having met, stop to talk to us in the street, because at some stage they have crossed our paths, and they remember Samara!!<br />The only pediatrician out here visits the town once a month. We have only met him once, but he seems really good. He put an action plan in place so that if we take Samara to the ER with a cold, she is automatically admitted and monitored, which is great. Not that I like being in hospital, but she can go from perfect sats to crashing in a matter of minutes.<br />She has only had to be admitted once since we came out here, and I have to say, she was pretty popular, being the only child in the hospital! LOL<br />The early education unit at the state school is not as good as the one in Woody Point. I guess I expected that anyway, but I do miss Woody Point. Next year, things are going to change a bit, and Samara will be in a smaller class meeting once a week, rather than the current once a fortnight, with a lot of bigger boys on the autistic spectrum - a bit hard for her to take. I am hoping to get the teacher to impliment some more music and art once this happens.<br />We have had 2 floods out here since we moved. In one of them, our house ended up on the channel 9 news! We had to move the stuff in storage under the house up onto the porch. Good thing this place is up on stilts!!<br />Samara has had several trips to Brisbane and Toowoomba for various appointment since we moved out here. She had another sleep study, which has shown no improvement since she had her adnoids removed. I have asked them to do another one in the winter time, as her sleeping is a lot worse then. She has also been fitted with hearing aids, but it is such a pain to use them, cos she takes them out and hides them! Sneaky little child! LOL. But her speech is certainly more clear and she is more talkative when she has them in.<br />Also, her overall demeanor has changed a bit lately. I took her in for blood tests, and they are showing high levels of Renin and Tri-glycerides. The first test showed high potassium levels too, but this has settled. She is going for a scan today of her kidneys to try and figure out what the problem is. She may need further testing on her liver as well, but that will be determined after her next blood test in a months time.<br />A month ago, Renata came back home from her year in New Zealand. At first she was unsure if it was for a holiday or to stay, but she is now working at Woolworths, and intends staying for a while at least. It has been good having her here, and she has grown up and matured so much during her time overseas.<br />Christiana is also working at Woolies, which has been great for her confidence. She is coming along really well, and getting over some of her shyness issues (but not all! LOL).<br />Sara is still in New Zealand, and has moved in with Alicia in Christchurch. I am really missing them both at the moment, and wish we could be closer.<br />Bryanna is becoming a real teenager now. Making a lot of her own friends, and even overcoming her intense dislike of boys! She still vows and declares she is never getting married or having a boyfriend cos that's gross, but at least she isn't automatically dismissing half the population as potential friends any more! At this point in time, we are thinking her learning difficulties are more likely to be related to an acquired brain injury she had at 5 years of age, rather than Aspergers Syndrome. But we can't investigate it further until we have our Permanent Residency sorted out!<br />Mahalia is coming along a lot with her reading difficulties. She is even reading chapter books now. She is still a bit behind maturity-wise, but I can see some changes that will hopefully be enough to see her through.<br />For Christmas, we made a Christmas Tree for the town's Christmas Tree Festival, that was all decorated in blue and yellow (DS colours), and had photos of many of the DS children I have 'met' through the internet. I think it was pretty successful, and the local Disability Support Services took pictures to include in their newsletters.<br />This week, along with the floods, we are in the process of moving. The owners of this house are moving back in in a couple of weeks, so we have to move on. We thought we were going to have to live in the caravan, as we can't find a place to rent, but we have been offered a 'crisis' house in the meantime. Pretty disgusting though. The last tenants were obvious druggies, and very messy! But at least we will have a house to live in! Speaking of which, I should probably be doing something to help with the move.......Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-78102775759987496362010-09-05T11:40:00.004+10:002010-09-05T11:58:06.188+10:00A Party and a Shake-UpWell yesterday's earthquake is still top in most Kiwi's minds. There were a few of us at the party yesterday, including to Ch-Ch families. Alicia is working today which seems a bit soon. They are expecting a quake measuring 6.0 by the end of the day, and they have gale force wind warnings in place for today as well. Hopefully there are no more injuries. Just really thankful that there were no deaths! Even in Timaru there were breakages, like the top of the spire of St Mary's church. There was also a pub in Temuka demolished (Temuka is a small town about 20km north of Timaru.<br /><div><br /></div><div>Last night Bryanna prayed that Alicia would sleep under the table. But not because she was scared. Because it was cool! That child comes up with some interesting logic sometimes LOL. I do still worry about her. Having a child in the midst of it all kinda changes how you view these things. They are feeling aftershocks every half hour or so, some over 5 magnitude.</div><br /><p><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5513241348418110290" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEVwsy2xh3BkWZt8UWuGRT_JrZmOcauIgiqVDUw18j2rQ03e9EaT2EuVrgbhGJH0wFrCJqm50LGf9h4sL-pxYjdJAegPh1-LUDxzV3Rr3uoJyNwDEzs6O_beLmwP9L5AQhNolzvvptwmKS/s400/earthquake+colombo+st.jpg" /></p><p>Here's a picture I swiped from the internet. Tried to get some better ones, but I kept getting this one as it was part of a slideshow.</p><p>On a happier note, Samara had a great birthday party. Apart from a major choking session after eating a Dorito that is!</p><p>I haven't uploaded the camera yet, but last night I took this picture of one very exhausted little dinosaur. </p><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5513242138885350882" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsUL2GbDPWS2DD58secueIJrNkm_YdVpaHRThvt1-bdJf8SInqq6eB8hbRZuxxdBC_Rw857NsEVzO_ue9oKb5e7i-n-vQkLYU24fH0tLyvyihK8OB5X25ynuPTuWSKSIE7XO5MgihsCqMd/s400/DSCN4214.jpg" />She fell asleep in her highchair without touching her dinner at about 6.30 and slept through until 9am this morning!<br /><div></div>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-49221158057154704902010-09-04T06:48:00.002+10:002010-09-04T06:55:48.871+10:00Christchurch EarthquakeWell, I was woken at 5.30 this morning by Sara ringing me from New Zealand to tell me that there was a massive earthquake in Christchurch this morning. She knows me well enough to wake me up and let me know they are all okay, rather than let me read about it on Facebook and freak out!! LOL.<br />Alicia lives in Christchurch, and said while it was freaky, they are all okay. Power is out in most of Ch-Ch, but not her place, so she is pretty lucky there!<br />It seems kinda hard to believe really. I mean, there are quite a few small earthquakes there, but I don't ever remember there being one that caused damage. Seeing the photos online doesn't really equate with Christchurch in my mind!<br />Personally I hate earthquakes. They really scare me. So I have to say, I am so glad I wasn't still in New Zealand right at this moment.<br />Apart from Samara's birthday party later today, it is also her cousin Hannah's 10th birthday party today. I am thinking that maybe the attention will be more on the earthquake than her. I hope not though. And I hope she has a great pool party! Good thing it's in Timaru, not Christchurch. Otherwise it may have had to be postponed.<br />Well, it is 7am now, and the family will start to wake soon. But I am exhausted, so going to try and catch a few more zzzz's.<br />Please keep the people of Christchurch in your prayers, as damage becomes more apparent, and as they deal with the cleanup, sewage problems, and looting.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-37243630873128090582010-09-04T00:30:00.002+10:002010-09-04T00:42:09.423+10:00Nearly 2 yearsWell, in 13 hours time, we are going to be celebrating Samara's 2nd birthday. Her actual birthday isn't until the 23rd, but because we are about to move away from Brisbane, we thought we'd have an early party where Samara can have her friends over.<br /><div>Today has been spent making and decorating her cake. Actually, the last 2 days have been spent making and decorating her cake.</div><div>And now, I am so exhausted. It was a bit of a work of art, complete with the mess that accompanies such endeavours. And the whole nutty artist who really loses the plot. But the results are worth it. Don't you think?</div><br /><div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5512697314747683410" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEl_Cacq-iyndXKdgiyG_dYPXWcSdXMZHg31m5D0HQWGcHYjL-pYfoPAyIFY19bJ0Y4opaKNyVqwywZU889YjadPuFe7Ab5PKLQQCafWTKvTef5K9TcHigY8mqPoNNDqaBuGlNNldsTJr9/s400/DSCN4213.jpg" /></div>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-51092287949302422032010-08-29T03:33:00.003+10:002010-08-29T17:10:16.492+10:00Reflections on DisablilityEver since Samara was born something has been plaguing me. Should something be done to 'fix' our kids, or does accepting and loving them mean accepting the way they are and not trying to change it?<br /><br />Is Samara's whole personality, or even her human-ness tied up in her disability? I know she would seem like a different person if the DS were taken away suddenly, but is that a good or a bad thing?<br /><br />When we were first given the diagnosis, the only hope I held was that we could give her a 'normal' life if we found out about the alternative treatments. So I jumped online and began my search. You would think it would be fairly easy, considering these treatments have been around a while now. But it took weeks of searching, until I found a few that looked promising. Basically Nutrivene (a Targeted Nutritional Intervention) and The Changing Minds Foundation, which uses a combination of natural therapies with prozac.<br /><br />Well, I don't know about in the States, but in Australia, it is not so easy to get a script for Prozac for a baby! So we decided to go with TNI. We ordered the stuff (which turns out to taste terrible), and started on our way.<br /><br />After 6 months, we ran out of supplies, and simply haven't had the money to renew. Now, there is no major research been done into how effective these miracle cures are, and particuarly with TNI, there is the obvious implication of the hundreds of dollars they make out of you for every order you place. Changing Minds is a bit different, as they pretty much give you the information, but don't sell the products.<br /><br />But in trying to decide whether or not to continue persuing these or any other 'treatments', I am left asking myself a difficult question. One that doesn't seem to have a real answer.<br /><br />I love Samara just the way she is. There are aspects of the Down Syndrome I don't like. There are other aspects that are totally awesome and I wouldn't want to lose.<br /><br />But this isn't about me. It's about her. It doesn't matter what I want, like, need etc. It's not about whether or not I am happy with her diagnosis. The real question is 'What is best for Samara'?<br /><br />Is she better off if we can raise her intellectual ability to within 'normal'? Is she better off if she doesn't 'look' like she has DS? Would she have a better life if we could make her appear as 'normal'?<br /><br />Or is her disability actually a blessing for her? Is it really so bad that she doesn't ever have to worry about the world ending tomorrow? Is it a problem that she won't be a doctor, lawyer (or worse) a politician? Does it matter if people make assumptions about her because of how she looks (which is incredibly adorable IMHO)?<br /><br />I struggle to find the answers to these questions. Questions she is too young to understand. But questions that beg answers now, while she is young, and there is a chance to change things.<br /><br />Questions that are clouded by my own wants and needs. I personally have gained a lot through having a Special Needs child. But why should she 'suffer' (if indeed she does) just so I and others can learn from her?<br /><br />Every human is born with potential. But is life really all about doing all we can do to reach the limits of that potential? Is it such a bad thing is Christiana becomes a stay at home mother of 12 (her current ambition), rather than using her brain (she is pretty intelligent) and becoming a paediatrician? (as our neighbour is trying to push her towards).<br /><br />Is it okay for Samara to stay intellectually disabled, or should we try and extend her capabilities to their limits? Which is better for HER?Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com2tag:blogger.com,1999:blog-1988123118197067183.post-34248758337303638232010-08-27T13:07:00.003+10:002010-08-27T13:32:30.550+10:00Tutu's and SuperherosAs I mentioned the other day, I am going to start collecting dress up costumes for children who are in hospital at Royal Brisbane Childrens and The Mater Childrens hospitals with life-threatening conditions.<br /><div><div><div><div>I have been doing a bit of thinking about how I could go about this. We are moving next week out into the middle of nowhere, so I will be doing this to co-incide with Samara's appointments at the two hospitals.</div><br /><div>I am going to approach the Starlight Foundation (once I know I have enough support to keep this up as I can't do it on my own) and see if they would mind passing on the gifts to the children, as they meet children on every ward, and I didn't want to limit it to oncology. This would also remove any burden from the hospital staff in trying to keep track of it all. I think they already have enough to contend with! LOL</div><br /><div>If I get enough support and it becomes popular, I would love to find people in other areas to do the same thing for their local childrens hospitals. But for now, it's just Brisbane (although feel free to send stuff from anywhere!!)</div><br /><div>Also, if you would like to help, but don't have the time etc, I will accept donations of tulle, non-roll elastic, crochet-style headbands (available at Terry White and some of the discount type stores), ribbons, and fabrics suitable for making hero capes for the boys. Alternately gift cards for Spotlight or Lincraft stores could be used for buying fabric. If I get enough support, I will also approach some stores to see if they will donate or discount some fabrics for us, so maybe we could all meet somewhere and go do a bulk buy.</div><br /><div>There are several free patterns out there on the internet for tutus and for hero capes. I would advise doing a google search, as it would be nice to get some variety going. Also, some styles may suit some people's budgets, sewing abilities, likes and dislikes, etc better. </div><br /><div>If you want my no-sew directions, let me know. These are the ones I make to sell, so please only use these directions for this charity.</div><br /><div>At this point, I will not be doing anything to register as an official charity. The paper work isn't really worth it for something so small scale that might not even take off. If we got to the point of doing this country wide on a regular basis, I would reconsider this option.</div><br /><div>And, I think that's about it for now. If you would like to help out in some way, please contact me. When Samara was born, we spent 4 months at Ronald MacDonald House. We saw a lot of very sick kids. My heart would break for them, and I really wanted to do something for them. If this can put a smile on a childs face, it would mean the world to me, and more importantly their families.</div><br /><div>And those of you with children blessed with an extra chromosome, I am sure you know about the statistics for our kids with the likes of leukemia. I think it sits in the back of all of our minds as something we never want to face. Well, these families are facing it and living with it every day. If you are at all able, please help me to bring a little bit of cheer into their lives.</div><br /><div>Sorry for all the grovelling. It is just I am feeling very passionate about this right now, and getting it off the ground is the first hurdle. If I don't get support at this stage, the whole idea is likely to fizzle out. But if we can get it up and running, then we are more likely to be able to expand and share the love around!<img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 360px; DISPLAY: block; HEIGHT: 376px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509925785245983842" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlePM4qfz5Ja6Dg6kfVFUV9grLSE_VjjOIBYNBmQr4xeMBIPn3rwVWk_REWhx29sSiQzzV6ZEzZgW1K0JkVbXhBVQAtQJjjrUicr6PM-pHlVPlaAjWau6wrjJ8oAUAYhdz51MjxmONo2nr/s400/IMG_1495.jpg" /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 300px; DISPLAY: block; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509925784859014066" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMnSwkSA-0OTNoH3j6XairiCc0FxwdTAHP-a8D3sM-LQz5FDWfhxH1t5nxe_E8Yb-dXjT_E85BLO3sQv13kg-cqEO-a7hAOpYPN8HFAMEONptOP7pSeiCGY3l1H96fOdar6YBvxKVgHrVC/s400/DSCN4097.jpg" /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509925776716900226" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLfDQa20WfNcD3cCvoraxO2UljbZG12BiHXhn0zLpbylhsy_TwqZP_CbXFWBZueX4tuXHpQou9e3WlVqK3r2m2WePVCW3fbD3I9XLOM7m5voZs4hPEGxx2MDTwrFwLQkaJvwCgLtHE-Alv/s400/39182_1386160018376_1363300636_1772643_281154_n.jpg" /><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 53px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509925795665710530" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjsDElp07dZyD9NlmleF-dMbs1oY-Bppz5N4qMZK9kdYSI1EjHnKOKP02OVD0ev8YZbYQ3L7NSABGCqsbBZuazFJINMaRafAtQcN9_iv0_vLUyqg9QPnnECS3cezTR1A0CxuCsdxaUE1OP/s400/Banner.jpg" /></div></div></div></div>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-22166415854775387562010-08-26T01:31:00.009+10:002010-08-26T02:28:21.600+10:00The Last 5 Months<div><div><div><br /><div><div><div><div>Ooops. I didn't realise it had been so long since I checked in here. I keep meaning to do it, but there's always something else happening and I don't get around to it.<br /><br />Thanks to all who sent their condolences when Jes died. Even now, 6 months later I have my times when it all hits me like a flood and I cry yet another river. I don't know if it will ever be entirely real. Michael's other brother had a little girl who at 19 months was burned with boiling water. 4 days later she died of septicemia. I thought I'd never recover from that one. It was 8 years ago, and sometimes it still feels raw. But not in the same way. We didn't know her (they lived in the North Island and we were in the South Island) except through pictures etc. And also what happened to her was a horrible accident. There's a whole separate layer of things to come to terms with in Jes's case.<br /><br />Anyway, I don't want to bog myself down with all that again right now, so I am going to switch gears and do a bit of a fill-in.<br /><br />In June, Michael started a new job doing IT for a shire council in Roma (which is 7 hours inland from Brisbane, and only has 7,000 people). The girls and I are still in Brissy, but will be moving up there at the end of next week. Michael loves it, but we really don't want to go. I like having all the access to services, shopping etc that the city holds. But, on the good news front, we should be able to get Permanent Residency through the governments rural jobs scheme, so that would make it worthwhile. The current plan is to move back to Brissy by the time Samara is school age so she can go to a special school. I'm not a big fan of mainstreaming (having worked in that situation during teacher training) and I don't know that homeschooling Samara when the others have grown up and moved on would be fair on such a social child. But that's a few years away yet, we'll wait and see.<br /><br />At Samara's regular paed checkup in May Dr Slaughter (yes, that's his real name!) decided based on Samara's sleep study that she needed her adenoids out. She was also failing her hearing tests, and had glue ear, so they put in grommets as well. They were going to take out her tonsils, but when they got in there they decided it was too risky. Her airways were so narrow they couldn't even get a ventilation tube down without giving her steroids. This meant that to get at her tonsils, they would have to tip her neck back a long way, and with the neck instability thing our kids can have (and there's a higher chance with her, as all my family has Ehlers Danlos Syndrome - a joint instability problem) it just wasn't worth the risk. Anyway, the upshot of it all was that she almost never snores now!! Her hearing went from being moderate to severely affected to being moderately affected. Not as good as we hoped. So she is waiting for hearing aids now. She hates anyone touching her face or ears. She won't wear her earplugs when she has a bath (to keep water out of the grommets). So I know that getting her to wear hearing aids is going to be real fun. NOT!!<br /><br />Speaking of Samara, we are going to be having an early 2nd birthday party for her on the 4th (the day before we leave) so that will hopefully be fun. We're going to go with a Wiggles theme (this will be the 3rd Wiggles party I have done over the years!)<br /><br />Last month, Renata surprised us with a visit home for a bit over a week. Michael knew she was coming, and I had a vague suspicion but didn't really know. It was nice to see her again.<br /><br />Samara's new tricks include learning a lot of songs. Her favourites include 'rock-a-bye your bear' (Wiggles), D_O_R_O_T_H_Y the Dinosaur (wiggles again!), Twinkle Twinkle Little Star, and the welcome song they do at school. She is good at picking up the actions, and attempts the words too. She isn't walking yet, but can stand herself up without using anything to climb against. In the morning she asks to 'det up', then yells at the girls to 'det up' too!<br /><br />As for me, I have started a new hobby busines<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicPK_38x_lxNvm5xStBVbCD0fHkASlrYIRenlfUQFxufb_vFWFi1oe6639JNPVglwNevmxz4zuoo3DuYWEJtuW4YNqkeL-gRfXrqdtDn_otjMoIUFYaaRaxhETNfsaTucL9uusrgKfIkaL/s1600/IMG_1545.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 267px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509379339568499218" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicPK_38x_lxNvm5xStBVbCD0fHkASlrYIRenlfUQFxufb_vFWFi1oe6639JNPVglwNevmxz4zuoo3DuYWEJtuW4YNqkeL-gRfXrqdtDn_otjMoIUFYaaRaxhETNfsaTucL9uusrgKfIkaL/s400/IMG_1545.jpg" /></a>s making kids clothes. Here's a few samples.... <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDFR0bW_THUnn75s3jaYaxDggDybJzRcigTYtFQ04Uu5QlFJCW3mVuf3pD_9UZSWKuNwRAySOrEvEVScgSJYE5aFYABVTrYg4NYsV4bZHt8W-Z8g8Q9NlqC1TZElFIKqoWIP0a5OvCL2_k/s1600/IMG_1462.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 267px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509376266390763938" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDFR0bW_THUnn75s3jaYaxDggDybJzRcigTYtFQ04Uu5QlFJCW3mVuf3pD_9UZSWKuNwRAySOrEvEVScgSJYE5aFYABVTrYg4NYsV4bZHt8W-Z8g8Q9NlqC1TZElFIKqoWIP0a5OvCL2_k/s400/IMG_1462.jpg" /></a><br /></div><br /><br /><br /><div></div><br /><br /><br /><div>Samara modelling a Tutu Dress which converts to a skirt to fit up to 6 years. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX5gK_0381i7PTqFcaA7m-4MhK1EPDvLxy-uwkrMk_V4orLOi8Wmp-hkayNEv-VsaBxl_cYoJSyALUkN5Ulc1amNFiO3pA0qQoWFUtJEQU049t5V4JxWC6kcZ45rdyCp5HIC5mKLSYXOIg/s1600/40391_449479737111_662837111_6261336_6063339_n.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 400px; FLOAT: left; HEIGHT: 300px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509379306466766994" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX5gK_0381i7PTqFcaA7m-4MhK1EPDvLxy-uwkrMk_V4orLOi8Wmp-hkayNEv-VsaBxl_cYoJSyALUkN5Ulc1amNFiO3pA0qQoWFUtJEQU049t5V4JxWC6kcZ45rdyCp5HIC5mKLSYXOIg/s400/40391_449479737111_662837111_6261336_6063339_n.jpg" /></a></div></div></div></div></div></div><br /><br /><br /><p>My lovely niece Jayde in the dress I sent back with Renata (despite it being a New Zealand winter, and the poor child freezing!!)<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia8nDhurZfB1nJEfF7N5LFdPAT4HlusQMZ-JBXyj3lJurmI_MQ1B3LWQFrPgx2tCAn4u8E26txD3npADyrUqNMSzcCIbaJ7qx4OZkdRcI-0vSh_op2XtKUstmDX2mrTNy-XI8fAU5jk3MA/s1600/38603_1386160898398_1363300636_1772653_6239533_n.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 300px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509380713977966786" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEia8nDhurZfB1nJEfF7N5LFdPAT4HlusQMZ-JBXyj3lJurmI_MQ1B3LWQFrPgx2tCAn4u8E26txD3npADyrUqNMSzcCIbaJ7qx4OZkdRcI-0vSh_op2XtKUstmDX2mrTNy-XI8fAU5jk3MA/s400/38603_1386160898398_1363300636_1772653_6239533_n.jpg" /></a></p></div><br /><br /><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrKr_HYc6d0Z8nBGt4bQ0W_O1TdZ6jyxao9XSB1Lvx4XiF1E4_FgaZaNwMU9ywp8MlWXHaxVHqbVYNi-ER8_kbSyj2-P8N4eAzcQKtpS8DYJnaQtmzEIKQkFatvVQM2zQkOG4VFUoxPXWD/s1600/Amy+and+Emma.jpg"></a></p><p>My other gorgeous niece (who I missed meeting when we were in NZ), Autumn who is wearing a smaller version.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrKr_HYc6d0Z8nBGt4bQ0W_O1TdZ6jyxao9XSB1Lvx4XiF1E4_FgaZaNwMU9ywp8MlWXHaxVHqbVYNi-ER8_kbSyj2-P8N4eAzcQKtpS8DYJnaQtmzEIKQkFatvVQM2zQkOG4VFUoxPXWD/s1600/Amy+and+Emma.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 400px; FLOAT: left; HEIGHT: 267px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509380727039134194" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrKr_HYc6d0Z8nBGt4bQ0W_O1TdZ6jyxao9XSB1Lvx4XiF1E4_FgaZaNwMU9ywp8MlWXHaxVHqbVYNi-ER8_kbSyj2-P8N4eAzcQKtpS8DYJnaQtmzEIKQkFatvVQM2zQkOG4VFUoxPXWD/s400/Amy+and+Emma.jpg" /></a></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOreCMEN88j3BcuowGOLcCQMUOF03Y5yXkxIOo51j-2Sm90jUD70jsr5GecLxBmZomxd1GoqfX1EmsKZxheDnCuc7yuCrtbOVZJS7w373hAdl2DmCFICgUihNNXktTZeru30TtboQLQP74/s1600/IMG_1474.jpg"></a></p><p>Amy modelling the dress as a skirt, and her little sister Emma in the dress. (These two are my adorable neighbours who we will miss terribly)</p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ2eNQGIARnqEnJZn598mOgnXBnuBtDZjST5I_Ph-xNWsijFBSjbn07rxppbRvL7cn6v77atYQzN8IKLG9T16DGo8nDsGhhN8P57UjE1fcplOPjojN1oX38z2n00OO3KYu-7BkJD-k_FS4/s1600/IMG_1528.jpg"></a></p><p></p><p></p><p></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOreCMEN88j3BcuowGOLcCQMUOF03Y5yXkxIOo51j-2Sm90jUD70jsr5GecLxBmZomxd1GoqfX1EmsKZxheDnCuc7yuCrtbOVZJS7w373hAdl2DmCFICgUihNNXktTZeru30TtboQLQP74/s1600/IMG_1474.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 202px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509379324941394194" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOreCMEN88j3BcuowGOLcCQMUOF03Y5yXkxIOo51j-2Sm90jUD70jsr5GecLxBmZomxd1GoqfX1EmsKZxheDnCuc7yuCrtbOVZJS7w373hAdl2DmCFICgUihNNXktTZeru30TtboQLQP74/s400/IMG_1474.jpg" /></a></p><p></p><p>I have also been refashioning clothing by taking good quality used clothes and making them into something worth having! This cute little dress used to be a hideous mens shirt! In fact, Bryanna suggested we call it the 'ewwww, ahhhh' dress. Because it used to be 'ewwww', and now it's 'ahhhh'.</p><p></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP5Y5JxnxQk_FcdGqLX52U7EG7t4sJC9QYC5_UEj3ZJhAgd29WF6bhCewLrhCd8fkub7DflNyJdtO-hKAudM_ZsxL-2Ktkx8sL7S6k652rftotrt75NCxHiut2cdcLhm-SBJOk4Max85XK/s1600/IMG_1564.jpg"></a></p><p></p><p></p><p></p><p></p><p></p><p></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ2eNQGIARnqEnJZn598mOgnXBnuBtDZjST5I_Ph-xNWsijFBSjbn07rxppbRvL7cn6v77atYQzN8IKLG9T16DGo8nDsGhhN8P57UjE1fcplOPjojN1oX38z2n00OO3KYu-7BkJD-k_FS4/s1600/IMG_1528.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 267px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509379329422208130" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ2eNQGIARnqEnJZn598mOgnXBnuBtDZjST5I_Ph-xNWsijFBSjbn07rxppbRvL7cn6v77atYQzN8IKLG9T16DGo8nDsGhhN8P57UjE1fcplOPjojN1oX38z2n00OO3KYu-7BkJD-k_FS4/s400/IMG_1528.jpg" /></a></p><p></p><p></p><p>Another refashion (a bit small on Samara, but she was the closest model I had!). This one is made from new stripey fabric and button, new singlet with the bottom removed and given a 'lettuce' edging, a preloved shirt (for the shoulder frills and the skirt frill), and a pair of pumpkin patch jeans.</p><p></p><p></p><p></p><p></p><p></p><p></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP5Y5JxnxQk_FcdGqLX52U7EG7t4sJC9QYC5_UEj3ZJhAgd29WF6bhCewLrhCd8fkub7DflNyJdtO-hKAudM_ZsxL-2Ktkx8sL7S6k652rftotrt75NCxHiut2cdcLhm-SBJOk4Max85XK/s1600/IMG_1564.jpg"><img style="MARGIN: 0px 10px 10px 0px; WIDTH: 216px; FLOAT: left; HEIGHT: 400px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5509380723258808402" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP5Y5JxnxQk_FcdGqLX52U7EG7t4sJC9QYC5_UEj3ZJhAgd29WF6bhCewLrhCd8fkub7DflNyJdtO-hKAudM_ZsxL-2Ktkx8sL7S6k652rftotrt75NCxHiut2cdcLhm-SBJOk4Max85XK/s400/IMG_1564.jpg" /></a></p><p></p><p>This one is technically refashioned (I am keeping this one for Samara) but I will be making them from new materials for sale. It is a corset top and a 3 layer skirt. The picture was taken at night with flash, so it isn't the best, but just believe me when I say it is adorable!</p><p>If anyone wants to have a look, become my fan on Facebook. Just do a search for Just Juniors. I am actually running a competition til the end of August (not much time left), where you go in the draw to win a Tutu Dress. One entry for each friend you refer who becomes a fan. (just make sure they let me know who sent them)</p><p>Well, it's 2.20am, and we have therapy in the morning, followed by a visit to some ex-Kiwi's we used to vaguely know (but didn't know were here until Mahalia ran into them at a homeschool sports day last week!). So I'd better go get some sleep. Tomorrow I will try and get here a post about the Tutu Drive I am doing to get little skirts for young girls who are seriously ill. I will be asking for donations of any dressups (boy or girl - seems a bit mean to just do the tutus...) but they must be new. Keep watchin for further information.........</p>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-50999126450533231672010-03-29T23:59:00.004+10:002010-03-30T00:16:14.974+10:00Home and SickWell, I can't say our trip to NZ was the happiest, but I am glad we went. The first week was very hard, trying to come to terms with Jes's death. I still have my teary moments, and I guess I always will.<br /><br />We tried to give the girls some happy memories while we were there. We got to meet my sister Sonia's baby - Jayde. Man, has that child got a good set of lungs! Sonia was horribly jealous of our placid little girl:)<br /><br />We got to take Alicia out for her 21st (which is actually today, seeing as it is 3am in NZ). I am still baffled as to how I got to be the mother of a 21 year old!!<br /><br />Sadly we weren't able to stay long enough to see my youngest sister Rachael's baby. She is due on the 5th, so I guess I'll just have to go back! LOL.<br /><br />Samara had a great time in dad's huge lounge, and got in plenty of crawling practice. She has her own unique technique which involves moving the left leg in the normal way, but then stiffening her right leg and pushing with her foot. But hey, whatever works!! She was a little confused by all the people who seemed to know her, and found it a bit much at times. But, true to form, she loved being the centre of attention.<br /><br />One of her funnier moments was when her and I were playing with a toy that involved putting some little round (almost ball-like) butterflies into a flowerpot that tipped over and sent them rolling. When one rolled across the floor, I told her to go get it. I repeated "you get it" a couple of times. She set off to crawl across, then stopped. Thought about it for a moment, climbed up on me, then pointed to it going "et it, et it"!<br /><br />Sara and Renata are enjoying their studies, although Sara is a bit baffled with all the psychology stuff she is doing! They were both really excited to see Samara, and were showing her off to their friends. Of course, who can blame them?!<br /><br />The other girls were all happy seeing their friends and family, once they got through those first few days. They didn't want to come home, which was a bit of a bone of contention when it came to trying to get them to pack up all their stuff!<br /><br />I got a sore throat on the Sunday before we came home. It is now Sunday again, and it is still really painful. It is the worst I have ever had, and the antibiotics aren't helping any. We have a rental inspection in the morning, and I have just been curled up in bed most of the time since we came home on Wednesday morning. Hopefully the agents will be understanding of the bombsite!Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-23236426617643063132010-03-10T09:17:00.002+10:002010-03-10T09:25:05.711+10:00It's Over and Done. Or is it?Well, yesterday was Jes's funeral. Not that it made it any more real. How can suicide ever be real to those left behind?<br /><br />We went and saw her on Sunday, but it really didn't look like her. I think they were trying to cover her bruising, by having her chin tucked down. But what it did, was left her looking like she had 3 chins, and as if she was in her 30's not 18. But her hair was a beautiful as ever!<br /><br />A friend of hers is a graffiti artist and tagged the coffin, decorating it with painted pink roses. Quite pretty really. Her middle name is Rose.<br /><br />As for those of us who were there to say goodbye, the place was packed with people who loved her. In fact, it was said by the funeral director that if she had seen how many people loved her, she would never have done what she did.<br /><br />Why do we always wait until someone is gone before we tell them how special they are? Maybe we should all have pre-funerals! That way we would know how loved we are!!<br /><br />Later today Michael (and maybe I) are going to see Colin without the kids. Not that I have any idea what we can say or do. But I guess it comes down to being there. It hurts me so bad. I can't imagine what he is going through.<br /><br />I also wonder how those without faith get through something like this. It must be awful to think there is no hope. Having said that, my faith doesn't hold out much hope for Jes any more. But I can't bare to think about that.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-84670954288312081182010-03-05T23:26:00.002+10:002010-03-05T23:40:01.925+10:00Suicide is NOT painlessThe jury is in. The song is wrong. Suicide is painFUL!<br /><br />Just 2 nights ago, my niece, Jess, comitted suicide. She was 18 years old. No-one knows why. She never left any clues. Personally, I wonder if she was really just going for some attention, but misjudged things.<br /><br />You see, she hung herself. But not in the normal way. Her feet were on the ground the whole time. The rope was tied to a tree, that she simply leaned away from. Was she just unconscious before she could change her mind? Or did she really mean to do it?<br /><br />If she meant to do it, why did she send her dad (Colin) at text message sometime in the 2 hours from when she sent it, and when she was found, that just asked what he was up to? No hidden meaning in that.<br /><br />Did she think no-one would care if she was gone? I have been depressed. I have felt suicidal. I have thought the world would be better off without me. Thankfully, God has picked me up every time.<br /><br />Now, I know, from bitter experience, that the pain that those of us left behind suffer is indescribable. It is totally unbelievable that this has even happened. My kids grew up with her. Renata and her even shared one of their birthdays.<br /><br />She was such an adorable little girl, with the most amazing curls (I was so jealous!) As she grew up, she had her problems. Life can be hard in the teenage years. But no-one had any inkling that she was depressed or anything. Could this have been avoided? No-one will ever know.<br /><br />Tomorrow we head off to New Zealand for the funeral. Alicia, Sara and Renata (our 3 oldest) are already there for their studies. I want to hug them, cry with them. But I don't want to go. I want to shut down and pretend that while I am here in Australia, everything is fine. But once I get to New Zealand, the truth will bore it's way into my very heart and soul. The tears are already falling. The anguish is already there. But I know it will get worse.<br /><br />I keep going over and over and over the fact, that the day before yesterday was just an ordinary day. A day that should have remained ordinary. A day we would have promptly forgotten.<br /><br />But now, it will be etched in our minds forever. The day that I learned that suicide is NOT painless.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com3tag:blogger.com,1999:blog-1988123118197067183.post-64406852559944276062010-01-25T01:57:00.002+10:002010-01-25T02:07:48.246+10:00So Amazing, You AreI have just been watching a video on You-tube about a little girl (Gabby) who recently died after open heart surgery. Her mother is on one of the Down Syndrome forums I frequent. The song in the background is You're Amazing (or something like that!)<br /><br />I have been in tears a lot lately. I am so scared about what is going on with Samara's lung, and with the bronchoscopy she has to have on Wednesday. The bronch isn't in itself a major surgery. It's about as minor as they come. But the only history of anaesthetic that Samara has isn't the best. She desatted into the 20's and caused a pretty big stir in the ICN. Also, there is the possiblility of them finding something that means further surgery on her lung. And that is a terrifying thought.<br /><br />Young Gabby was such an adorable little girl. And watching the video and pictures of her, I couldn't help thinking that they had no idea at the time that these images would be all they would have left of their little baby. And, I am scared that we could find ourselves just like them. I am terrified of letting go. Of trusting God. No matter what.<br /><br />I just want to pick her up out of her bed, and hug her so tight. I never want to let her go. She may have only been with us a short time so far, but I cannot ever imagine life without her. The last 16 months since she was born (and the months of anxiety before she was born) have been a massive rollercoaster. There have been high highs, and low lows. And I would go through them all again to have her in our lives. We have been so blessed, that I am scared we are running out of blessings! <br /><br />Totally illogical. And there have certainly been some hard times associated with her diagnosis.<br /><br />But I want the whole world to know, that Samara is one incredibly special little girl. She is 'So Amazing', and I love her so much that my heart is overflowing. Sometimes, we have to be faced with what the world would term as 'not so perfect', to realise what true perfection is. She has been fearfully and WONDERFULLY made. And that extra chromosome doesn't take away from that. If anything, it adds to it.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-3525055023963639652009-12-31T10:05:00.004+10:002009-12-31T11:07:32.015+10:00The Sheer Wonder and Joy of having a child with DSOk, I have been asked about this. And the truth is, I have been pretty harsh on this blog. Not because it is primarily about the bad, but because I come here to vent/cry and let it all out. Then, I move on.<br /><br />So, today is a new day, and I am going to put in a bit more effort with the positives. This may seem a bit jilted, because I am going to try and answer the question about the wonders and joys, rather than just spilling my guts so to speak, so please bear with me.<br /><br />Having had 7 children, I have been through all sorts of ups and downs with them. And, now that 5 of those children have been/are going through the teenage years, I am getting to the point where I am starting to reap both the rewards and the punishments of my parenting skills (or lack there of!)<br /><br />While it is true that my older girls will have more choices ahead of them in life, it is also true that some of the choices they make could cost them dearly. I hope and pray that they do not get involved in some of the truly scary things out there like the classic sex/drugs/alcohol scenes. I see them struggle with making adult decisions that could affect them for the rest of their lives. I see them worry about what their friends think/say/do, and where they fit in. <br /><br />As they get older, they become more aware of who their true friends are. Yet they continue to make wrong choices due to peer pressure. Their faith gets tested in ways I never imagined. They start to question everything. It is all part of growing up. But it is a loss of innocence. A loss of the wonder of being a child.<br /><br />BUT, and here's where one of the biggest joys comes in, Samara won't loose that innocence and wonder. She is extremely unlikely to go down the drug route. Sure, she will go through some of the teenage stuff, and go through rejection issues, but, from what I have learned, she won't be likely to let that rule her life. She is likely to always keep the innate ability to come to Christ as a 'little child'. Something the rest of us loose along the way.<br /><br />During the night, Veritee woke up (something Samara never does unless she is sick). It was so hard to comfort her. She was pretty good and all. But with Samara, I can just hug her, and her whole body just relaxes into mine. She absolutely LOVES hugs. Admittedly, sometimes she goes a bit overboard with her vampire kisses, and hair pulling - her way of getting you closer - but her enthusiasm for cuddles is awesome! But Veritee just doesn't do that. My other kids were like that too. A short cuddle was fine, but then there was other stuff to do and they wouldn't stick around for long:)<br /><br />Samara has this amazing ability to touch the hearts of everyone she meets. She is so sociable. People just gravitate towards her. She is always so aware of people, and will sit there for ages 'talking' to them, watching them, etc. In fact, at playgroup, she is totally smitten with her teacher aide, and would much sooner talk to her than do stuff! <br /><br />In our society we put way too much emphasis on IQ, when something that the world is lacking in is EQ. Well, our kids certainly bring a huge amount of Emotional Intelligence into our world. I don't know exactly what it is, but they have the most incredible people skills. And they love unconditionally. A pure, sweet love that is so much more than the superficial love that we see so much of today.<br /><br />When each of my other girls met their milestones, I was proud and happy. But when Samara reaches hers.....well the joy is indescribable. It brings tears to my eyes every time. I just absolutely burst with pride and joy! I have seen the struggle that goes with learning a new skill. I have felt frustrated when she has been frustrated. But, oh, the joy of reaching each mountain top! It is an emotion that goes beyond all others I have experienced as a mother.<br /><br />I have also found the whole experience really fascinating. Our other kids all grew and changed so fast, I bearly had time to register each new thing as it happened. But with Samara I get to sit back, watch, and enjoy the ride. I have learned so much about all the steps that go into acquiring a new skill. Who would have known just how important all those seemingly pointless things a baby does? It really is amazing to see it all unfold in slow motion, and with the guidance of her therapists. We really do miss so much in the development of our 'regular' kids.<br /><br />When I had my other girls, I was pretty much 'on my own'. I had to muddle through learning all the skills I would need to bring them up. But with Samara, the help and support is incredible. She has a lovely Physio, and Speech therapist who are constantly there cheering us on. Her teacher and teacher aide at the Woody Point Special School are both incredibly lovely ladies. Every health issue she has, I have a miriad of professionals I can discuss them with - a lot harder with the other kids - they seem more willing to listen to Samara's problems than with the others.<br /><br />I have inherited a whole new family. Because, that extra chromosome links us in a mysterious way to so many people around the globe, who have experienced that extra dimension in our lives. We come from all walks of life, and yet we share a bond that goes beyond anything else I have found. There is something amazing about finding others who just 'get it'. I can't explain it really, but those of you who have experienced this will know what I mean.<br /><br />I have learned so much about myself. Not all of it good, but all of it worthy. As in, I have been changing, for the better. The value I put on life, on others is increasing. I have always been a caring person, but somehow, in the last year something deeper has been happening in my heart. My capacity for love is growing.<br /><br />My bond with Samara has been strong out of necessity. Whenever I didn't feel like being up to the parenting task with the others, I would opt out emotionally. But with Samara, I have to be there. I have to put the effort into doing her therapy, playing with her, singing to her, whether I feel like it at the time or not. And that is a good thing. It stops me from withdrawing and sinking into further depression (something I have battled with all my adult life). And it strengthens the bond between the two of us.<br /><br />Whenever Samara sees either Michael or I, her whole face lights up. She is so excited to be with us. She hasn't reached that 'ho-hum,I'd rather be doing other things' stage that most kids her age have reached. I love that she loves us so much!<br /><br />I really do hate the health issues she has. But even these have a bright side. They make me appreciate every minute of her life. Because I worry about all the things that could happen, and because I have 'met' people who have lost their little ones, I really value the time I have with her. We have been really blessed, in that she has no heart issues, and I do worry excessively about her breathing issues, and the upcoming operation (more on that in a separate post), but I do like the way that these worries help to underscore and accentuate my love for her.<br /><br />She has the most gorgeous eyes. How often do you get to see a child who has stars in their eyes? Well, my little girl has them. They are adorable!!<br /><br />My life is more 'real' since Samara became a part of it. The things that really matter seem so much clearer. Sure, I still have plenty of unworthy hangups, but my ability to get past them is improving. And my ability to stand up and fight has improved. Sometimes I have to face issues that I would have let slide with the others. But no more. Now I have to get past my own insecurities and push for medical help, therapies etc. I am becoming a stronger person.<br /><br />Another, unexpected advantage has been that I have gotten to see Michael in a new light. I tend to get really fed up with his attitudes and anger issues. He tends to be a bit of a 'grumpy old man'. But with Samara, I see his countenance changing. He relaxes. He laughs. He plays. He loves. He is the father to her that I wish he was with the others. Maybe, his heart will change toward them too, as he learns to have a fathers love for his baby daughter. He never had a decent role model. But, somehow, in one of those unexplainable ways, this little girl is showing him the way.<br /><br />I could go on and on. I guess I already have. And like I thought it would be, this post has ended up a disjointed mish-mash! But I keep on rambling because I just can't find the words to describe the stirring in my heart. I keep hoping I will hit on it. That I will be able to put in writing the love I have for my little girl. But it is beyond anything that can be expressed in words. I wish that I could lay out those feelings for you. And that is why I wish everyone could have a T21 baby. Because there is no other way, than to experience it for yourself.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com3tag:blogger.com,1999:blog-1988123118197067183.post-51273459806128710562009-12-31T01:30:00.002+10:002009-12-31T01:47:45.478+10:00The Truth Hits HardVeritee is staying here at the moment. Her mum, Kerrigh is in the hospital with complications in her pregnancy.<br /> <br />For those of you who don't know, Veritee is the youngest of Kerrigh's 6 girls (well, almost the second youngest of 7!) She was born at 30 weeks gestation, one week before Samara. They were due a day apart. <br /><br />So, we met at the Royal Women's while our children were in the Intensive Care and then Special Care Nurseries, and we were at Ronald McDonald House.<br /><br />Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.<br /><br />Back in April, we went to stay with them. The girls' were 5 months corrected. I was petrified that I would find it hard seeing how much more Veritee was doing. But the truth is, Samara was holding her own pretty well, and Veritee was experiencing some delays. Now, don't get me wrong, I did worry about Veritee because, over the months Samara seemed to actually pass her in a lot of things. But, at the same time, it did make it easier to deal with when Samara wasn't doing too bad in comparison.<br /><br />Well, as it turns out, Kerrigh was suffering from an anxiety disorder, and Veritee simply wasn't getting the stimulation she needed. Which, is actually good news as far as Veritee goes, because she has been getting a lot more of that stimulation lately.<br /><br />But, today, while being overjoyed for Veritee, I was hit with a fresh wave of grief for Samara. Watching Veritee crawl, pull herself to stand, say quite a few words etc has been a harsh reminder that no matter how much Early Intervention we do, no matter how many dollars we spend on alternative therapies, no matter how much we pray, the truth is, Samara will always be left behind.<br /><br />And it hurts. It really really hurts. I hate to see my baby girl sit there watching Veritee scooting around everywhere, with a real look of longing in her eyes. She wants to follow - to join the exploration. But she is stuck. She can move a little bit, but it takes her so much effort. I just want to cry out IT ISN'T FAIR!! Why does everything have to be so hard for my sweetie? <br /><br />I know I have to get past this. If I have an attitude about it, she will end up with an attitude about it. For her sake, she needs to accept the way she has been designed. Because she was designed. She is not a mistake. We all have our crosses to bear. But for some reason, I wish I could take hers from her. <br /><br />And yet, I do know how blessed we are to have her. A part of me wishes everyone could experience the sheer joy and wonder of having a baby with Down Syndrome. I find myself wishing all my pregnant friends would have a baby with T21. Is that bad? (of course, I would wish for them to have none of the medical issues that go with it!)<br /><br />Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-14533713926242744492009-12-15T03:23:00.002+10:002009-12-15T03:31:39.764+10:00LonelinessHave you ever felt totally left out. Like when you wonder if you have some form of leprosy or something. Like people just don't seem to like you.<br /><br />It reminds me of school. When friends were hard to make. When you just can't seem to fit in, no matter how hard you try. Somehow, whatever social skills are needed just seem to elude you.<br /><br />I guess it's the Aspergers traits I can see in myself. I find it hard to make friends, but I don't really understand what I am doing that turns people away. I genuinely care about others. And I do have some great friends and neighbours. But I still feel so much like an outsider. Like everyone is sniggering behind my back or something.<br /><br />As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected. <br /><br />Did you ever belong to a group of people, who all seemed to click, but you were sitting on the outside desperately trying to be a part of them? A group where everyone gets invited to a special event except you? Where, for all intents and purposes, you should be as much a part of the group as anyone else. But something separates you?<br /><br />What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.<br /><br />Am I really that horrible to be around?Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-17511871602535388052009-11-12T13:11:00.003+10:002009-11-12T13:13:56.352+10:00The SpecialsThis is just a quick post to let you know about a great reality show on the Web called The Specials. It is about 5 adults with intellectual disabilities living together in a house. It is great value and well worth a look.<br /><br />To view the show, including past episodes, click on the link in the side bar.<br /><br />Each episode lasts approximately 10 minutes.<br /><br />Here is the first episode as a preview....<br /><br /><object width="560" height="340"><br /><param name="movie" value="http://www.youtube.com/v/1Vx0rR6c_7A&hl=en&fs=1&color1=0x3a3a3a&color2=0x999999"></param><br /><param name="allowFullScreen" value="true"></param><br /><param name="allowscriptaccess" value="always"></param><br /><embed src="http://www.youtube.com/v/1Vx0rR6c_7A&hl=en&fs=1&color1=0x3a3a3a&color2=0x999999" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="560" height="340"></embed><br /></object>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com0tag:blogger.com,1999:blog-1988123118197067183.post-14717565373785421592009-10-21T01:04:00.001+10:002009-10-21T01:06:51.405+10:00AnniversaryI have just copied and pasted this from DSDU. It was written late Monday night so the dates don't fully match up, but those of you in America won't notice that anyway LOL.....<br /><br />This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-64850638302883076892009-10-07T05:04:00.002+10:002009-10-07T05:30:52.532+10:00Sometimes I really hate that Samara has DSToday, Samara starts her 4th day in the hospital. All she has is a regular cold. It's a nasty one - it has knocked the rest of us down a bit. But for Samara, a cold is not just a cold.<br /><br />Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.<br /><br />Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.<br /><br />Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.<br /><br />We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!<br /><br />Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!<br /><br />Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.<br /><br />Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.<br /><br />Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!<br /><br />Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.<br /><br />But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.<br /><br />On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!<br /><br />On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL<br /><br />Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com3tag:blogger.com,1999:blog-1988123118197067183.post-27584831736928682432009-09-28T10:48:00.004+10:002009-09-28T12:02:54.308+10:00Elmo CakeI have had a request for some pictures of Samara's birthday party.<br /><div><div><div><div><div><div><div><div> </div><div>She slept for most of it. Possibly she was conserving energy for the cake........</div><br /><div>Here are the cake pictures. I will add other party pictures in a separate post.</div><br />First up we have the cake. It was a bit of a drama. Elmo looked near perfect when I first made him. But then the Queensland heat got to him. The icing started to melt, and his eyes and nose slid right off his face! Now I really wish I had taken a photo right at the start! Anyway, here is the version that was as repaired as I could manage. The icing had lost a lot of it's volume, so the fur look never did get back to it's original plushness. I guess he was just like a real Elmo toy once a baby has matted his fur!<br /><img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 213px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/The-Cake.jpg" border="0" /><br /><div></div>Samara didn't know quite what to make of this new Elmo when she first saw him....<br /><img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/A-New-Elmo-Toy.jpg" border="0" /><br />So she did what she always does when she sees an Elmo. She gave him a hug and a kiss!<br /><div><img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/Hugs-n-Kisses.jpg" border="0" /></div></div></div></div></div></div></div></div><br /><p>Deciding that, while this Elmo didn't talk like most of them do, he could be forgiven. Especially since he tasted so GOOOOOD!<img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/Elmo-Tastes-Good.jpg" border="0" /></p><p>The resulting crime scene was not a pretty sight! CSI would have had a field day!<img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 213px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/The-Crime-Scene.jpg" border="0" /></p><p>Fearing a wrongful death suit, Samara thought it might be best if she covered her tracks by eating the evidence.....<img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/The-Evidence.jpg" border="0" /></p><p>But the evidence was speaking for itself. With Elmo "blood" all over her face even AFTER daddy had put her under the beach showers!<img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 213px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/Blood-on-her-face.jpg" border="0" /></p><p>So I tried to clean her face, hands, and arms with Wet Wipes.....<img style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 213px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/The-Cleanup.jpg" border="0" /></p><p>When we got home, she had a bath. Yet after these 3 cleaning attempts, she is still a red tinge! </p><p>Needless to say, there wasn't a queue waiting to eat what was left of poor Elmo after that. </p>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com2tag:blogger.com,1999:blog-1988123118197067183.post-34606021196959310032009-09-23T10:38:00.003+10:002009-09-23T11:02:00.117+10:00Happy Birthday Sweet Baby Girl!Well. We did it. Samara's first year has now ended. This time last year, Samara was just 19 minutes old. I was completely knocked out, and Samara was in NICU on a ventilator.<br /><br /><br />Now, she is laying in her bed, exhausted after another night of coughing. I am laying on my bed after another night of patting her back and checking her sats.<br /><br /><br />She really couldn't be bothered with much this morning. Although she did really like her new Elmo Pillow book. She also liked Up, Up Elmo. Not too sure what Dorothy the Dinosaur was. And we haven't given her her swing yet, cos the landlord is fencing in our yard today, so there is nowhere to set it up:(<br /><br /><br />I am enjoying the quietness of today, knowing that tomorrow we will go from only havin<a href="http://i488.photobucket.com/albums/rr247/lamb-miller/270295876_tp.jpg"><img style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 144px; CURSOR: hand; HEIGHT: 281px" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/270295876_tp.jpg" border="0" /></a>g 3 girls here, to having 12 when Kerrigh arrives with her 6 girls! Then things are going to be full-on. We have FECS tomorrow, then I am going to meet Kerrigh and the girls at the bus. Friday we have Premmie Playgroup, then the doctors. After that I have to do the grocery shopping for the party, bake the cake, find someone to blow up the helium balloons I bought from the States (here is a picture of the best one!), pray (hard) that the weather will be fine Saturday (the clouds are rolling in at the moment!), make sure all the girls have their Sesame Street Tees ready to wear........I think I may fall into bed at the end of the day! Then Saturday I need to decorate the Elmo cake. Shouldn't be too hard, but it makes a lot of mess - and the kitchen here is a shoebox!<br /><br /><br />But I am really looking forward to the party. It is going to be such a huge celebration. Because we have so much to celebrate. We have been blessed with such a massive miracle in such a small package! They say the best things come in small packages - and in Samara's case I can really vouch for the truth of that!<br /><br /><br />Samara's breathing is sounding pretty whistly. I'd better go check her sats......<br /><br /><br />Til next time........Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1tag:blogger.com,1999:blog-1988123118197067183.post-35045333805355675632009-09-22T20:47:00.002+10:002009-09-22T21:08:48.194+10:00The significance of tomorrowWell, in just over 3 hours it will be the 23rd. The day that marks one year since our precious angel was born. It is hard to believe that this time last year, I went off to bed totally unaware that within the next few hours I would have the major bleed I had been warned of, get rushed down the road from Ronald MacDonald House to the hospital, have an emergency c-section and 2 blood transfusions, and then later that day get to meet the most beautiful fragile little baby I could imagine!<br /><br />Now, at nearly 8kg, she is over four times her birthweight. She is totally convinced she is a big kid. She even takes one arm out of her carseat straps, so she is just wearing a seatbelt over one shoulder like the big girls! She is trying to walk. She is a fair way from it yet, but that doesn't mean she isn't going to try! She has learned some sign language. She shows definate preferences for what she does and doesn't like. Elmo, lollies, icecream, chocolate custard, chicken (not mushed up tough!) flashing lights, baths, bubbles are all worthy of enthusiasm. Medicine, nose-wiping, sitting in the car, babies who pose an attention risk are not:)<br /><br />On the way to Kingaroy at the weekend, she ate more than half of Renata's icecream. We gave her another one, and Samara ate half of that too! In fact, she got mad at Renata for taking any for herself! She is even getting fussy about the bottle. She wants to drink from a cup. Not a trainer cup mind you. A real one. Talk about making a mess! Not to mention the fact that we have to be careful that she doesn't aspirate it by going too fast.<br /><br />This past year has be frought with many difficulties, and much sadness. But it has brought so many joys and enriching experiences, that I find it hard to believe that it has all fitted into one year. In some ways it feels like she has been here forever. That we have been on this Down Syndrome journey forever. (and that's only been 11 months since dx). I was saying to Kerrigh the other day that the days in the nursery really seemed to take forever. Those 2.5 months felt like an eternity. But the 9.5 months since then have just flown by.<br /><br />Tonight as Samara lays sleeping in her bed on the other side of my room, I am sitting on my bed listening to her wheezing breath. Hoping she doesn't end up in hospital on her birthday. That just wouldn't be fair. I wish I could take away this aspect of her disability. The rest isn't so bad. I just don't like seeing her struggle like this.<br /><br />I sit here, and I watch her. And I feel such a huge wave of love wash over me. I am floored by it every time. It brings tears to my eyes. We really have been blessed beyond our wildest imaginings.<br /><br />Samara - I love you with all my heart. Have a wonderful birthday sweetheart.xxxKiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com3tag:blogger.com,1999:blog-1988123118197067183.post-74259449115985974452009-09-16T12:55:00.002+10:002009-09-16T13:53:33.956+10:00Yes, I'm still alive...........Thanks for asking:)Well, after my last post the laptop power connection broke. I hate when that happens! Anyway, it took a while to get it fixed, and I am too lazy to sit at the computer desk for longer than I have to! Then, I finally got it back, and have spent the last couple of weeks catching up with people, a<a href="http://i488.photobucket.com/albums/rr247/lamb-miller/Painting-pg-1.jpg"></a>nd generally just doing nothing much! <div><div><br /><div>Then Cathy asked me about it on dsdownunder, and I finally got the kick up the pants I needed!</div><br /><div>The house we were looking at fell through. The place the owners were supposed to be moving to fell through, so they have stayed in their place. </div><br /><div>Samara has had a few more colds/bronchiolitis, and had to go on steroids again. We have just got an oxygen saturation monitor off ebay, so now I can see how her levels are when she is sick, or having apneoas. She had quite a few last night where her levels dropped down to around 80%. I considered taking her to the hospital, but the trouble is, once she wakes up she is fine, and we just get sent home.</div><br /><div>We don't get in to see the sleep clinic (and I'm just talking initial consultation) until 16 December! So who knows how long it will be before she actually gets a sleep study. I am tempted to take her to the hospital every night that her sats drop below about 85, just to bug them, so maybe they will make it sooner just to get rid of us!!!!</div><br /><div>This weekend we are heading up to Kingaroy to Kerrigh's place (Veritee's mum who has been featured here before!). We have to get the container of stuff we have on our friends property in Childers off by the weekend. So now we have to find a container, and ship everything down and put it in a paddock at Kerrighs. I really can't be bothered, but while we are still in this 2.5 bedroom house, we don't really have a choice.</div><br /><div>I am getting very distracted at the moment, by a certain 16 year old with Aspergers who is going completely off her rocker. The girls have got the dreaded headlice yet again. They are being treated today, and she doesn't like the way it was being applied!!! So she has been storming through the house punching kicking swearing and screaming. I really don't feel like dealing with her! I was up til 3.30am with Samara's breathing, and then up at 6.30am getting organised before Playgroup.</div><br /><div>The playgroup at Woody Point Special School now has a group especially for babies which Samara likes way more than the one with the older kids. She especially likes the bubbles song, and painting. She is getting better and better with her sitting, and trying to stand. But still not interested in crawling or rolling. She is a chatty wee thing, and has learned a few basic signs, and made up some of her own.</div><br /><a href="http://i488.photobucket.com/albums/rr247/lamb-miller/Painting-pg-1.jpg"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 320px; CURSOR: hand; HEIGHT: 320px" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/Painting-pg-1.jpg" border="0" /></a><a href="http://i488.photobucket.com/albums/rr247/lamb-miller/Painting-pg-2.jpg"><img style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 320px; CURSOR: hand; HEIGHT: 320px" alt="" src="http://i488.photobucket.com/albums/rr247/lamb-miller/Painting-pg-2.jpg" border="0" /></a><br /><br /><div></div><br /><br /><br /><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div> </div><div>In just one week from today it will be Samara's first birthday. And what a year it has been. We are going down to Suttons Beach where we are going to have an Elmo party. I am just waiting for the balloons to arrive from the US, and then we will be set. Michael thinks she will nose-dive into her cake, and he plans on videoing said nose-dive for Funniest Home Videos! Typical male thing to think of LOL.</div><br /><div>On the 10th of October (Sara's 18th), Sara, Samara and I are going down to the Gold Coast to meet some of the other dsdownunder families. It should be a great week. We are going to all go to Seaworld, where we are going to have a combined birthday party for Samara, and Armarli and Tori-Shaye (who are both turning 2 around then). I am really looking forward to it. Everyone else isn't showing up til the 11th and 12th, so I thought we might go on one of the short cruises around the bays for Sara's birthday.</div><br /><div>Well, that's pretty much all that's been happening here. I'll go have a look on photobucket now for a picture or two to pretty this post up! LOL</div></div></div>Kiwiaussiehttp://www.blogger.com/profile/15322028429326751329noreply@blogger.com1