Bloggers Syndrome

A year of horror, a new business, and a growing toddler....

2011-05-07T10:54:00.000+10:00

Well, this year has been eventful so far if nothing else.

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.

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!!

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!!!

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.

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.

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

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.

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

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.

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!

2011-01-17T07:41:00.002+10:00

Water, Water, Everywhere

2011-01-17T07:16:00.004+10:00

Well, the last couple of weeks have certainly been eventful in the state of Queensland.

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!

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!

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.

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.

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.

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.

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.

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.

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.

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.

Thank you. And please, even if you can't give financially, remember this family, and the others in Queensland in your prayers.

2011-01-17T07:16:00.001+10:00

On the last 4 months

2010-12-30T09:59:00.002+10:00

Wow, 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.
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?!
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!
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!!
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.
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
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.
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!!
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.
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.
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.
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).
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.
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!
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.
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.
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.......

A Party and a Shake-Up

2010-09-05T11:40:00.004+10:00

Well 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.

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.

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.

On a happier note, Samara had a great birthday party. Apart from a major choking session after eating a Dorito that is!

I haven't uploaded the camera yet, but last night I took this picture of one very exhausted little dinosaur.

She fell asleep in her highchair without touching her dinner at about 6.30 and slept through until 9am this morning!

Christchurch Earthquake

2010-09-04T06:48:00.002+10:00

Well, 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.
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!
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!
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.
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.
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.
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.

Nearly 2 years

2010-09-04T00:30:00.002+10:00

Well, 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.

Today has been spent making and decorating her cake. Actually, the last 2 days have been spent making and decorating her cake.

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?

Reflections on Disablility

2010-08-29T03:33:00.003+10:00

Ever 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?

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?

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.

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.

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.

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.

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.

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'?

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'?

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)?

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.

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?

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).

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?

Tutu's and Superheros

2010-08-27T13:07:00.003+10:00

As 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.

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.

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

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!!)

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.

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.

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.

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.

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.

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.

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!

The Last 5 Months

2010-08-26T01:31:00.009+10:00

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.

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.

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.

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.

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!!

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!)

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.

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!

As for me, I have started a new hobby business making kids clothes. Here's a few samples....

Samara modelling a Tutu Dress which converts to a skirt to fit up to 6 years.

My lovely niece Jayde in the dress I sent back with Renata (despite it being a New Zealand winter, and the poor child freezing!!)

My other gorgeous niece (who I missed meeting when we were in NZ), Autumn who is wearing a smaller version.

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)

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'.

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.

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!

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)

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.........

Home and Sick

2010-03-29T23:59:00.004+10:00

Well, 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.

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:)

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!!

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.

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.

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"!

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?!

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!

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!

It's Over and Done. Or is it?

2010-03-10T09:17:00.002+10:00

Well, yesterday was Jes's funeral. Not that it made it any more real. How can suicide ever be real to those left behind?

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!

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.

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.

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!!

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.

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.

Suicide is NOT painless

2010-03-05T23:26:00.002+10:00

The jury is in. The song is wrong. Suicide is painFUL!

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.

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?

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.

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.

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.

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.

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.

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.

But now, it will be etched in our minds forever. The day that I learned that suicide is NOT painless.

So Amazing, You Are

2010-01-25T01:57:00.002+10:00

I 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!)

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.

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.

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!

Totally illogical. And there have certainly been some hard times associated with her diagnosis.

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.

The Sheer Wonder and Joy of having a child with DS

2009-12-31T10:05:00.004+10:00

Ok, 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.

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.

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!)

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.

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.

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.

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:)

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!

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.

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.

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.

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.

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.

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.

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.

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!

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.

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!!

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.

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.

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.

The Truth Hits Hard

2009-12-31T01:30:00.002+10:00

Veritee is staying here at the moment. Her mum, Kerrigh is in the hospital with complications in her pregnancy.

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.

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.

Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.

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.

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.

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.

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?

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.

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!)

Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.

Loneliness

2009-12-15T03:23:00.002+10:00

Have 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.

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.

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.

As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected.

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?

What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.

Am I really that horrible to be around?

The Specials

2009-11-12T13:11:00.003+10:00

This 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.

To view the show, including past episodes, click on the link in the side bar.

Each episode lasts approximately 10 minutes.

Here is the first episode as a preview....

Anniversary

2009-10-21T01:04:00.001+10:00

I 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.....

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.

Sometimes I really hate that Samara has DS

2009-10-07T05:04:00.002+10:00

Today, 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.

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.

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.

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.

We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!

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%!

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.

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.

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!!

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.

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.

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??!!

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

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.

Elmo Cake

2009-09-28T10:48:00.004+10:00

I have had a request for some pictures of Samara's birthday party.

She slept for most of it. Possibly she was conserving energy for the cake........

Here are the cake pictures. I will add other party pictures in a separate post.

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!

Samara didn't know quite what to make of this new Elmo when she first saw him....

So she did what she always does when she sees an Elmo. She gave him a hug and a kiss!

Deciding that, while this Elmo didn't talk like most of them do, he could be forgiven. Especially since he tasted so GOOOOOD!

The resulting crime scene was not a pretty sight! CSI would have had a field day!

Fearing a wrongful death suit, Samara thought it might be best if she covered her tracks by eating the evidence.....

But the evidence was speaking for itself. With Elmo "blood" all over her face even AFTER daddy had put her under the beach showers!

So I tried to clean her face, hands, and arms with Wet Wipes.....

When we got home, she had a bath. Yet after these 3 cleaning attempts, she is still a red tinge!

Needless to say, there wasn't a queue waiting to eat what was left of poor Elmo after that.

Happy Birthday Sweet Baby Girl!

2009-09-23T10:38:00.003+10:00

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.

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.

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:(

I am enjoying the quietness of today, knowing that tomorrow we will go from only having 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!

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!

Samara's breathing is sounding pretty whistly. I'd better go check her sats......

Til next time........

The significance of tomorrow

2009-09-22T20:47:00.002+10:00

Well, 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!

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:)

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.

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.

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.

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.

Samara - I love you with all my heart. Have a wonderful birthday sweetheart.xxx

Yes, I'm still alive...........Thanks for asking:)

2009-09-16T12:55:00.002+10:00

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, and generally just doing nothing much!

Then Cathy asked me about it on dsdownunder, and I finally got the kick up the pants I needed!

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.

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.

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!!!!

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.

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.

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.

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.

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.

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

The Paed Visit, FECS, and the Down Syndrome Awareness Poster

2009-07-30T20:21:00.002+10:00

Well, Dr Slaughter (yep, that's really his name! - but I figure that a dr with a name like that must be pretty good to still be practising!), has put Samara on the waiting list for a sleep study. It could be a long wait though. In the meantime, he has prescribed Rhinocort for her, in the hopes that it will help. He thinks the problem could be allergy or asthma related, or at least worsened by one of these. Especially since both are in the family.

She had a pretty exhausting afternoon at FECS doing physiotherapy and Speech. But she did have a lot of fun with all the toys! We have been given some exercises to do to try and get her rolling over, and also to push up on her hands when she is on tummy time. We are also starting to encourage her to reach in different directions when she is sitting, rather than just staying in her safe central position.

I have spent a lot of the last couple of weeks doing photos for the Down Syndrome Awareness Week poster. Today, I was at the DSAQ office helping them to do a mock-up poster. We still are waiting for some of the products, and we need to get a nice cloud shot (but it hasn't been cloudy!) for the background. I am also going to play with the photos a bit and try a couple of different layouts, and alternate photos, but this is what we have come up with so far. The one of Samara and Emma (our next door neighbour) were a bit of a challenge. Samara grabbed Emma's foot, and Emma had excema there, so it hurt her. After that, Emma didn't want' to go anywhere near Samara! I was worried that we wouldn't get anything, but with a bit of hardcore patience, we finally came up with a few useable images!

The product shots were interesting. I haven't done products since I did my photography training! But I was pretty pleased with the way they turned out. Some of the products haven't come back from the manufacturer yet, but when they do, they will go down the right hand side. Well, that is if we keep with this layout. I am thinking of turning the 3 in the bottom picture sideways, and making the overall portrait part go across the page, with the products underneath. We are a bit limited though, because the whole thing has had to go before the committee, so we have to stay within certain guidelines.

While I was there, I found out that 2 of their staff are off work with Swine Flu. Also, a friends daughter may have it too. (we have seen them twice this week). I hope Samara doesn't get it. Her breathing problems are scary enough as it is. It doesn't worry me for the rest of us. But I would do anything to keep her from getting it. I am thinking of starting her on Kyolic. Just to give her that little bit of extra protection against it and other colds and flus.

Well, the battery on the laptop is about to go flat, so I'm going to call it a day now.....

The Joys of Respiratory Problems

2009-07-27T21:45:00.003+10:00

Ok, so joys probably wasn't a good choice of words. But Samara is having terrible problems trying to breathe at night. And, as a result, I am having terrible problems getting enough sleep. Poor girl. It is so hard watching her struggle like that.

From what I have heard from other mums, their bubs have mostly had problems too, but it doesn't make it any easier. And there doesn't seem to be much literature out there about it either.

We are off to see the paed again tomorrow, so I am going to ask him for a sleep study for her.

We started at Woody Point Special School playgroup today. The teacher there asked me if she could hear ok. I had been a bit concerned lately cos she didn't seem to be responding as well as she used to. She also doesn't turn towards sounds/voices etc. I am wondering if she may have glue ear. I will ask about that tomorrow too.

Yesterday we had a combined housechurch celebration meeting out near one of Brissy's lakes. It was a lovely day, and so beautiful. A friend of ours came with a Shout Shout Elmo for Samara that she had found at a garage sale. I tell you, that made her day! You should have seen the grin on her face LOL.

Afterwards we went and had a look at a 6 bedroom house that is for rent. The owners are homeschoolers with 8 kids, so they know what it's like trying to find a house for a large family. We will probably take it, and it should be available in about 6-8 weeks time. So that's pretty exciting after being in 2.5 bedrooms for so long:)

Anyway, gotta go. Bubby wants a feed. Will try and get back sooner next time.

2nd Anniversary of our immigration

2009-07-18T15:19:00.002+10:00

Well, today marks 2 years since we moved to Australia. 2 years and 1 day ago, I lived in Timaru, New Zealand. The same town I was born in, and lived most of my life. We lived in a 5-6 bedroom 100 year old villa, that we were working on doing up. We were right next door to Michael's work, which was very convenient. But, boy was it freezing! Average temperatures that were below freezing overnight, and not much more during the day. Our 6 daughters all lived at home with us. We had enough space for a scrapbooking studio and a library.

Since then, we have some totally radical changes. We can now go swimming at the beach at this time of year. It does get a bit cold, but more like an averaged summer day in NZ. We have lived in several different places. 8 months were in a caravan on friends' properties - 4 months in Childers, and 4 months in Glenwood. Michael was unemployed most of this time, and we were living off the sale of our house and the Family Tax Benefit.

Then Michael got a job on the Sunshine Coast. He commuted for a while, until we found a house to rent in Mapleton at the top of what the Australians call a mountain, overlooking Nambour. At Easter we found out we were expecting another baby. The rest of that story is already on here, so I won't go there, suffice to say it brought some radical changes!

After a few months at Ronald MacDonald House, we moved to Margate on the Redcliffe Penninsula, into a 2.5 bedroom house. It feels pretty crowded, and for that reason, we are hoping to move soon. We are looking at a 6 bedroom house for rent in Kallangur, which would feel great after being cramped so long! Although I would miss being right near the coast.

So, now, here we are, thousands of miles from 'home'. There are good things, and there are bad things. I miss my family. My sister is pregnant, and I don't know when I'll get to see her baby. I miss my friends, although we have made some great ones here. I get frustrated with all the things we don't get help with because we aren't Permanent Residency holders, and stressed about the whole application process that we are about to go through to get it.

We have a disabled child - something I was always willing to go through was adopting a Down Syndrome baby, but never, for the life of me, was I prepared for going through the shock of giving birth to one! She has had a fairly sickly winter - and for that I am so grateful we live in a sub-tropical climate.

I totally don't miss NZ winters. I am finding it cold enough here!!

But so often, I still question whether we did the right thing. Before we left, God told me not to be like Lot's wife. In other words - don't look back. So I am trying to focus on the fact that we are here. We are supposed to be here. Sure, we have had some setbacks. But there have been a lot of positives too. Besides, if this is where God wants us, then setbacks mean nothing. If we had our Permanent Residency Visas, a lot of the negatives would go away. I guess Queensland will always be the Paper State, but I can live with that. The people here are great. I love the place. It is so beautiful. So why do I keep turning back?

Going on a Car Hunt

2009-07-09T16:35:00.003+10:00

Well, Michael's little Ford Festiva finally spluttered it's last the other day. So after a nerve-wracking tow back home from Brendale (I hate towing!), it is now quietly dissolving on the front lawn! With a new term about to start, we are desperately searching for something to replace it. Next week, we have to fit in Childrens' Therapy Services, FECS, Woody Point Special School, Baby Massage, Playgroup - and that's just Samara! So having a second car is kinda important. Michael checked out public transport from here to work, and what is normally a 20 minute drive is a 3 1/2 hour commute on the bus/train! So that's not going to be a happening thing LOL. I spent the last 2 days driving around looking at cars, and I'm all caryarded (is that a word?!) out!

Samara is still struggling to get over this latest bug. She is still waking up with a horrible cough every night. She is also throwing up yucky mucousy stuff. I really hope she gets over it soon. It is so hard on her poor wee body:( Here is some cute pictures Sara took of her sitting in the swing at Redcliffe Hospital. She was all wrapped up in her blankie, with her toes peeking out the bottom. Too irresistable to ignore!! LOL

Today, she got her first pair of 'big girl' jammies. Funny thing is, I think she knows they are like her big sisters. She was all excited, and doesn't want to take them off (Bryanna insisted on putting her in them at 3 in the afternoon, cos they have horses on them, so are cute).

I got her a coloured magnadoodle the other day at the KMart toy sale. She thinks it's great. Her drawing control has a way to go, but she knew what to do, and was impressed with the colours magically appearing!

I have just finished reading a book I borrowed called "The year my son and I were born". It is an autobiography of a woman who's 7th child was born with Down Syndrome. Really down to earth and honest. If anyone has a chance to read it, I highly recommend it. It made me really face some of my own preconceptions and ideas with regards to disability. This whole situation has really. We had considered adopting a DS baby in the past, but it still hit me really hard when Samara was diagnosed. I couldn't really understand what the big deal was. Then I realised, that adopting a 'poor little disabled child' was altruistic. Giving birth to one was proof I wasn't perfect. Dumb really. But it has made me take a good hard look at my motives for doing things! I absolutely adore Samara, but I do still have trouble coming to terms with the fact that she has a major disability. I find myself inexplicably drawn to anyone I see at the mall with DS! I want to know them, to understand them. To prepare myself for her future. Sometimes I see someone who seems to be doing really well, and this gives me hope. Other times I see someone who is not very independant, and it scares me so much! It is so hard to just sit back and take one day at a time. I want all the answers. Yesterday!

I don't have all the answers for all my other kids. Why do I stress myself out so much over Samara's future? Why do I have so much trouble just accepting who she is? I love her so much. I wish I could protect her from the fact that the older she gets the further behind her peers she will get. At the moment it's not that much different from having my other kids. She's a wee bit behind, but weeks or months don't seem so bad compared to the fact that one day she will reach her potential, and that potential won't be what it is for the vast majority of people in this world. Why did she have to miss out?

Or did she miss out? Maybe she has been blessed with something the rest of us miss out on. I don't know. It was easier to think things like that before it was my daughter who was affected. In the meantime, I have to say, we have been hugely blessed with friends we would never have met otherwise. Maybe I need to just keep my head above water and look to my blessings!

In the meantime, we are trying to get everything sorted to apply for Permanent Residency as soon as the tax returns come in. I really want that over and done with. I am so scared we won't get it for some reason......Time for me to go feed bubs now. Will try and get back when I have something to say!

Jumping the Gun

2009-06-22T00:05:00.002+10:00

Well, tonight, I once again showed my true colours. We looked up the immigration website, and it looked like we were no longer able to apply for Permanent Residency. So I got all upset. I managed to not get to the point of blaming God. That would have been my first reaction not so long ago. But I was mad at the government. And mad at Michael for not applying sooner.

Well, it turns out, that if we get a move on, we can still apply. Well, not until we get our tax money, but believe me, I'll be pushing for our applications to go in ASAP!!

I still have such a LONG LONG way to go. Every time things look dismal, I resort to my old favourite - depression. Well, it's not really a favourite. But it does seem to be a habit or something. I never give things long enough to pan out. And I don't seem to have the ability to say 'who cares, whatever Lord'. It is an area I really need to work on. If Michael gets angry (something that is more frequent than I would like), I invariably think about leaving. If our residency status looks hopeless, I immediately think of going back to NZ. My stickability levels are pretty pathetic really.

Lord, I have so far to go. Please help me to get there.....

Home again

2009-06-15T11:52:00.002+10:00

Well, after spending a couple of days in the Emergency Ward at the Royal Children's Hospital, we were sent home, with a still sick baby. It had gotten to the point where it wasn't worth the risk of staying. They had several cases of swine flu admitted, and everyone was running around in masks. Here is Samara doing the Jailhouse Sulk.

Samara slept ok last night, but was still having quite a few apnoeas. The hospital dosed her up on steroids before we left, and were hopeful that these would carry her through the worst of it.

Poor Michael spent his 40th birthday at the hospital, and now, today, has woken up with a tummy bug! So he is off work and feeling pretty miserable! Samara has been throwing up a lot over the last few days, so maybe there is more to it than we thought.

Tara, if you are reading this - I hope Simeon is ok, and you are coping with all the drama. We have been so blessed in that Samara doesn't have any significant heart problems. My heart and prayers go out to you.

We have FECS coming out tomorrow to assess Samara for eligibility for Physio, OT and Speech therapies. Because we are not Australian Citizens, we are theoretically not eligible, but they are going to look at it from the angle that Samara was born here, so should get the help. I hope it works! Because she is actually a New Zealand Citizen by Descent, not an Australian Citizen. She doesn't get citizenship here until she is 10. But she does have an Australian birth certificate which is all they have asked to see.

Michaels mum and her hubby are coming over to Australia for a week on Thursday. They are staying down on the Gold Coast, so we are going to go down there for the night on Friday. We will be staying at Seaworld Resort, which will make a change from our usual holidays in caravan parks! Hopefully we don't have any sickies.

I have bought some bits to make a couple of mini scrapbooks for mum and Michaels mum. Now I have to actually go and make them before she gets here. I am thinking I should go and get enough bits to make one for dad and Alicia too. But, annyoningly, 2 of my printer inks have run out, so I need to deal with that too!

I guess I should really go and get on with it.

Hospital Again

2009-06-14T00:17:00.002+10:00

4 Nights ago Samara started having trouble breathing, and we took her in to the Redcliffe Hospital. They basically just did some obs on her, and suctioned out her nose, before sending her home a few hours later. The next 2 nights, I sat up with her all night keeping an eye on her. Then in the early hours of yesterday morning, we took her to the Royal Childrens Hospital. She is still there now on adrenaline, steroids and oxygen.

I am totally exhausted, and about to go to sleep (I hope!). And poor Michael will be spending his 40th birthday at the hospital!

We have FECS coming out on Tuesday to do an assessment on Samara, so hopefully we will be able to access physio, speech and OT through them. Then after that, I have a meeting with the DS association about taking photos for them for the DS Week posters. Should be fun!

Well, I know this is a bit of a pathetic entry. But I am tired. So tired that maybe I am just dreaming this. So I am going to try and catch some ZZZ's before heading back up to the hospital....

Night All.

On Sickness and Babies

2009-06-10T13:57:00.003+10:00

Well, as we head into another winter, so too, do we head into another round of sickness. While I am grateful we no longer live in the truly freezing climate of New Zealand, we haven't become totally exempt from the colds and flu's that are sure to do the rounds at this time of year.

We have all been down and out over the last week or so. But now, it is Samara's turn. Poor thing. She really does suffer when she gets a cold. In the darkeness of night, she suffers the most. And then she only has us to turn to.

So it was, that at 1.30am this morning, I decided that she had had enough. She had noisy breathing ever since she went to bed, but by 1.30 she was really struggling. Her wee chest was really heaving, and her breathing was erratic. So I woke Michael, and we took her up to Redcliffe Hospital.

First we had to brave the inquisition at the door. Had anyone had the sniffles? Well, Yes. That's why we're here! Had we been overseas? Not that recently. Had we visited anyone who had been overseas? No. (Whoops, we remembered later that friends we had visited had just returned from Thailand!) Anyway, we were let in, went through all the motions, and were seen pretty quickly. Thankfully, after several hours, and some suctioning, we were allowed to bring her home, on the proviso that we take her back if she gets worse.

Today she is a lot sicker than yesterday, so really, I won't rest well tonight, as I am expecting to have to go back up there. Hopefully that won't happen, but listening to her breathing now - I'm not going to get my hopes up too much just yet! The hospital are especially concerned because of her laryngomalacia, as this means she could go downhill a lot faster than other babies would. But given our past experience with respiratory illnesses, they felt that they could trust us to act quickly if the need arose. Also, we are only 1.5km from the hospital which was a big factor.

As for me, I am going to finish up a couple of jobs on the net, then I am going to have a sleep! I didn't get to sleep til about 6, and Samara woke at 8. I need to be fresh in case we have to go back tonight!

Faith

2009-06-07T01:10:00.002+10:00

Maybe because it's one am, and I can't sleep, I have been thinking and meditating on my faith. I have been reading The Way of the Master by Ray Comfort and Kirk Cameron. This has a lot to do with my current line of thought.

I have always believed in God. The God of the Bible. I believe that the Bible is His written Word. But, I've always had a part of me that has a problem with Modern Christianity. I could never fully put my finger on it. But I knew it had to do with the abundance of once-a-week Christians. Hypocrisy is rampant in the church. But why? If those who claim to love the Lord aren't showing it, then what is wrong?

I am finally starting to get some answers. Well, they are starting to come together anyway. It comes down to God's Law. Modern Christianity teaches that we are no longer under the Law of God (eg the 10 Commandments). That Jesus, by grace, has taken us out from under the Law. Yet, Jesus himself said that he didn't come to abolish the Law, but to fulfill it. So, what did He mean?

If we look to the 10 Commandments, we can see ourselves for who we really are. We have all broken them. But to what extent? And does it matter, as long as we are basically 'good'? What is the definition of 'good'? Well, take the commandment that says Thou Shalt Not Kill. Well, I have never murdered anyone. But, the Bible says that God sees Hatred as Murder. Uh, Oh. That's one I have harboured in the past. Thou Shalt Not Steal. Well, I don't see myself as a thief. But, then I have been given too much change before, and not mentioned it. Even now, I get tempted not to point it out when that happens. Thou Shalt Not Covet Thy Neighbour. Man, where do I start on that one? I am ALWAYS jealous of what so-and-so has that I don't. I am really starting to get the idea that I have broken a whole lot of God's Laws.

Now, if we break man's laws, we can be taken to court, fined, jailed, etc. Not something we ever want to happen to us, but something we expect to happen to anyone who wrongs us!! We have this God-given sense of justice. We know in our hearts when justice has (or hasn't) been served.

Well, in God's position of judge, he can only be just if we are punished for breaking the Law. To overlook our transgressions, would be to say that good and evil are subjective. That they don't really matter. But, therein lies a quandry. And that is, that God is Love. Now, if I love my child, and that child commits a crime, what is my responsibility? Well, some would complain that the justice system is unfair on poor Johnny. Some would wash their hands of Johnny and all his acts. And some, especially if he was truly sorry, would help Johnny out - maybe paying his fine for him if he was completely unable too.

Well, out of love, that is what God did. He paid our fine. But to understand that, we have to understand that we NEEDED Him too. We commited the crime, but He did the time! But, if we don't understand the DEPTH of our sinfulness (or darkness, or badness, or selfishness), then we won't be truly grateful for what He has done. We need to understand that the only options for us are Hell (a word that is not very popular in it's true meaning), and Heaven (via grace). But that Grace can only come once we have become fully and painfully aware of our shortcomings. We can NEVER be GOOD enough for Him. Now, God loves good. He rewards good. But no matter how much good we do, we will still be guilty of breaking the Law.

If a paedophile has donated millions to children's charities, do we say to him 'oh, well that's ok then. Your generosity outdoes your crimes'? Of course not! And, in fact, we would do all we could to have a judge who thought this was ok stricken from the register! Yet, somehow, we seem to think that we can apply that same line of thinking to ourselves.

It is simply not trendy to talk about sin, and wrongdoing, and selfishness. We all think we are doing ok. We think, if there is a God, He will surely overlook such 'minor' things. We think He is here to be at our beck and call. His job is to sit up in Heaven, and hand out blessings. Healing the sick, Helping us win lots of money, Keeping us safe. Or we say that there can't be a God, because if there was, His job would be to prevent catastrophe and suffering.

Says who? God is God. Not a creature we can put in a box and tell what to do. He is the Boss. The King of Kings. The Lord of Lords. I have totally got to get over myself and realise that. I am here for Him. Not the other way round. And yet, He loves me enough to show me how I can be in relationship with Him. Not because I deserve it. I don't. But, because He loves me enough to pay the price for my crimes. Not to overlook them. Not to have a double standard that says we can bribe Him by being His 'friend'. We cannot go to Him on Judgement Day and say 'but I did such-and-such in Your Name'. We cannot impress Him. We are ONLY forgiven by His paying the extremely high price of our sins. But unless we understand that we deserve the punishment, how can we ever be grateful that he has saved us from it?

And that is what is wrong with Modern Christianity. We have been told to come to Him. He is good. He is love. He will improve your life. He is your own personal genie.

Sorry folks. That's not how it works. He is righteousness. He is justice. He is perfection. He is worthy. He is the one who gives us our every breath. And until we realise this, we cannot come into the beauty of His glory, His love, His goodness.

I spent so many years asking God why? Why me? Why am I always sick? Why have my kids had various ailments? Why am I poor? Why, why, why? But, Praise God, He has bought me to a place, where I can say that I will trust Him. I will trust His judgement in giving me a precious baby with Down Syndrome. I will trust Him when I am laid up with broken bones. I will trust Him when I am feeling ill. Not my will, but His.

And as for the Great Commission. Sharing my faith. It is something I did with gusto when I was a new Christian. But all my 'converts' didn't last. I didn't get it. Until now. Now, I know that I was promising them something that God never did. I told them they would have 'Peace, Joy, Love'. That's not a reason to come to Christ. We should come because we owe Him. We are actually allowed to come to Him out of a Holy fear of the torment that follows the Judgement. So I kept quiet about God. I have kept His offer of Eternal Life a secret.

There are many out there who will hate what I have to say. And there will be times I will offend people. But I am coming to understand, that if I say I care about others, then I HAVE to care about their eternal well-being. Hell is not just where the party-goers spend their afterlife. Hell is a real place of eternal torment. I cannot bear the thought of another person going there.

I am sorry if this has offended you. I am no better than the next person. I deserve to be punished. But I have been saved. Something that I am not worthy of. And something that I am bound to share. I am bound by my Love for Him. And I am bound by my Love for You. Anything less would be to make me like a fireman who is so busy sucking up to the boss, that he fails to save a trapped child in a fire. Something that many in the Modern Church is guilty of. Something that I am guilty of.

Seaworld

2009-06-06T20:08:00.003+10:00

Well, we got to Seaworld on Monday, and just barely got back too! We got caught in a traffic jam on the Gateway for about an hour and a half from when we were 15 minutes away! It meant we got to the restaurant half an hour before closing, so they charged us kids prices and threw in free drinks! Anyway, apart from my ankle getting really sore, we had a pretty good day - even though it rained! Here's some of the scrapbook pages I made of the day:Mahalia wasn't allowed to hold Samara while the ride was going, but she was more than happy to pose for a picture afterwards! Samara wasn't impressed when the ride stopped, and tried to rock the horse to get it going again!
Samara was totally transfixed with this stare on her face right through the Sesame St Beach show! It was as amusing to watch her as it was to watch the show! Somehow, I think she will be a fan;) And, don't tell Sara, but I think she was just as excited to get some attention from Ernie as Samara was! LOL
Sara and Mahalia, Renata, Melody, Christiana and Bryanna on the Viking ride. I didn't get to go on any rides:( Well, except the Merry-Go-Round, and the helicopters, which don't count on the thrill scale!) I spent my time looking after Samara, nursing my ankle, and taking pictures!

Thankfully, on the way home, my friend Tracey drove. Considering the time spent in the traffic jam, I am so glad she did! Dinner was nice, but rushed, then we all got home exhausted!

The rest of the week has been a bit slow. I have had a cold all week, so have been laying low. Some of the others have had it too. Just glad that we're not going through it all in NZ, where the weather often meant I got chest infections with my colds!

I am considering getting a sleep study done on Samara. She, like her sisters, seems to be prone to apnoeas. There has been a discussion about them on the Down Syndrome forum, and apparently 60% of DS kids have them. The other night, I found Samara blue around the lips, eyes and nose. Her monitor wasn't alarming, so it took a couple of seconds to click that this was an obstructive apnoea (not central like Sara used to have) and therefore she was moving still. Gave me a bit of a fright when I realised. She has had a few other episodes, but they seem to be getting worse. In my past experience, they have gotten better with time, so Samara is quite different to what I am used too. From what I understand, the other parents have noticed them getting worse with age too. Now I just don't know whether to get on to it now, as she may be able to get help, or to wait until it is worse, and more likely to show in a sleep study. After our experience with Sara, I am worried that she would have a good night on the night of the study, and then we wouldn't be taken seriously. I don't know whether she has good nights and bad nights. Only that she has them. I also don't know if it's every night or not. It's so hard to know what to do. I want to do it when the time is right. Also, it seems that the paeds here don't really take it all that seriously. I have asked the others on the forum what they think, and will try discussing it with our GP first.

Oh, and to make life fun, the girls have got headlice (again!) I am really getting sick and tired of them. There's a couple of girls up the street who keep getting them at school, then passing them around. It's not their fault, but sometimes I don't want Mahalia playing with them or the kids they play with. But what can you do? We are all going through the treatments today, so hopefully we will get rid of them all. Speaking of which, its nearly my turn for the shower.....

Getting Back into Life

2009-05-31T23:26:00.005+10:00

After Samara recovered from her stint in hospital, we went up to Kerreigh's place near Kingaroy, for Easter Weekend. With her 6 girls, and 6 of our girls, it certainly was a full house! While we were up there, we took the opportunity to paparazzi-ise the babies again. Here's a couple of the pictures. First we have Samara and Veritee going head-to-head. Which could be something that happens for real as they get older. Next we have Veritee. She has the most amazing blue eyes, which I just had to show off with this picture! I also got one of Samara on Michael's arm. I didn't notice til a couple of days ago, but I had a similar one taken impromptu when Samara was 9 days old, so got rid of all the hospital paraphanalia using photoshop, then made this digital scrapbook of it. I love how it shows how much she's grown(and even more since!!)

The following week, Jason (K's hubby) had to go to Sydney for the week. Kerreigh doesn't like being home on the farm without him there, so the girls and her came and stayed at our place. Now, if we thought we were crowded in her big farm house, you can imagine what it was like in our shoebox! Sara came and slept inside for the week, and gave up her caravan for them. Somehow we got through it all, and even got more pictures of our beautiful babies! I especially like the matching princess dresses I found for them at Trade Secret, down from $70 to $5!

Because Kerreigh lives so far out of town, she doesn't get to do a lot of shopping in the big smoke. So it was a week that was pretty hard on the pocket book! But it was great to get out and about after being cooped up so long with my leg. By this time I was in a moon-boot, and could put minimal weight on my leg. I could also drive, which was a good thing, considering Kerreigh doesn't have a licence! We spent an inordinate amount of time at Trade Secret, Pumpkin Patch and Toys R Us! We also did a lot of op-shopping which was great, and we got quite a few bargains.

That week, we also started Samara on solids. Well, thick liquidy stuff that used to be solid, anyway! She started off with pear, and went at it like a pro! Here is a shot of the 2 babies feasting up a storm.

The only thing is, I can't honestly say this pear was her first solids! On the plane on the way back from New Zealand, Samara was sitting on Renata's lap. Renata, at the time, was eating a semi-melted bar of chocolate. You can see where this is going, can't you? Yep, sure enough, Samara leaned over and took a decent size chomp!! But how can you put in her record books that her first solid food was chocolate at 3.5 months corrected??!! So, for the record's sake, we are sticking with her first solid meal was pear at 5.5 months corrected.

Things went along nicely, until 4 days later when we tried her on apple. Within minutes, her face, head, torso and legs were covered in a nasty rash, and she screamed for the rest of the day. I wasn't sure whether it was an allergic reaction, causing a rash, which left her screaming, or whether she was just screaming about something unrelated, and the screaming caused like a heat rash. So we went back to pear for the next few days and then tried apple again. Same reaction. We figured we weren't going down that road again! WRONG! The next food we tried her on was banana custard. She had the same reaction. I read the ingredients label - who woulda thought? It contained apple! Then we checked out everything else we had. Even half the vegie mixes on the market contain apple!

For now, we are waiting to see a dietician, so for safety's sake (especially since apple is supposed to be low-allergy), we are sticking with pear, and baby rice. She still seems to react to other things though. She had a reaction to something today. Don't know what it was, although she did try putting Bryanna's popcorn in her mouth. Bryanna took it straight back out of her mouth, but now I wonder if corn is a problem too. She also seemed to react to a shirt Michael was wearing the other day. It must have been the powder it was washed in or something (it was a shirt he hasn't worn in months). Every time he held her, the rash came up, then would go down again after an hour or so of him not touching her. So he changed shirts, and the problem went away. I am quite worried about just how much she is allergic to.

Anyway, I'm getting a bit ahead of myself here! Over the next few weeks, leading up to now, we had 2 birthdays. Mahalia turned 10, and Renata turned 16. Mahalia had a combined birthday with the next door neighbour who turned 4. We went down to Suttons Beach. It was a beautiful day - something that didn't happen often on birthdays in NZ! Here she is cutting the Camp Rock birthday cake Renata made for her. Unfortunately I didn't get much in the way of decent pictures, as I was still pretty incapacitated with my broken ankle! I could limp around with crutches but that was about it.

We haven't celebrated Renata's birthday yet. 2 of her friends are down on the Gold Coast at the moment (Lauren from Childers, and Melody from New Zealand). So tomorrow we are heading down there to go to Seaworld with them. Then we are going to an all you can eat restaurant in Brisbane with them for dinner. Melody is staying the night tomorrow night, before flying out to England on Tuesday morning.

Just after Mahalia's birthday, Bryanna was washing dishes one Wednesday night. Michael and Sara had just left for SES (State Emergency Services - they are volunteers, and have meetings on Wed nights), and I was online on the laptop in my room. When Bryanna started absolutely screaming blue murder. To tell the truth, when Bryanna screams, my first thought is spider, or some other creepy crawly. And, this is Australia. There is ample opportunities for screaming here! Well, the screaming seemed to go on and on, and get louder and louder. In fact, it was louder than usual. And if you know Bryanna at all, that's pretty darn loud!!! So I went to investigate. (now, this sounds like it took ages, but it was probably all in the time it's taken for you to read this paragraph this far!) Anyway, Renata had been cooking some potatoes, but had too much water in the pot. Now, bear in mind that Renata has Aspergers Syndrome, and can only really follow one track of thought at a time. So, to her, the logical thing to do, was to tip some of the near boiling water down the sink. Well, Bryanna was using the sink, remember. Anyway, the end result was poor Bryanna ended up with second degree burns all over her hand! Michael raced home from SES and took her up to Redcliffe Hospital. They wanted her to go up to the Children's Hospital int he city (not sure if that's cos they have a burns unit, or because they couldn't handle the screaming!). Well, they had to send her by ambulance as she had been given morphine. So, Bryanna, being Bryanna, proceeded to tell them that the only other time she had been in an ambulance was when she was faking! Well, you should have seen the look of horror on the nurses face! Unfortunately, that nurse was called away, and never heard the whole story (which we made sure the ambos heard!). The story was that, when she was in St John Ambulance Cadets in New Zealand, they were having first aid competitions. She was being an asthma patient and had to act sick! The competitors then had to get her ready and into an ambulance! LOL. Well, the burns looked pretty nasty, but thankfully after a couple of weeks, they started to heal up really well. Now there is a small bit of scarring, and between her fingers looks a bit red, but apart from that, she is all good.

Over the last couple of weeks, as I mentioned the other day, I have started getting into digital scrapbooking. Next time I am on here, I will post some of my pages. For now, I need to sleep so I can make the trip down to the Gold Coast tomorrow. I am a bit concerned about walking around all day though. I still have the crutches, but that's a bit awkward, and I do get sore if I am upright too long.

Photobucket is back!!

2009-05-31T00:36:00.005+10:00

Ok, so it's not technically Photobucket's fault, but at least I can get back in! Trouble is, we don't have the same email address any more, so I couldn't reset it!! So I kept trying til I got it right! Anyway, here's some pictures from Samara's dedication. We have her in the antique bonnet we found at a Red Cross sale a couple of days before the dedication (which happened to have almost matching lace with the gown). Sara, Renata, Christiana, Bryanna, Mahalia and Samara after the service. And Samara once we got back to dad's place.

The biggest disappointment of the day was that Alicia had come down with a tummy bug, so wasn't able to come down for the weekend as planned. Aside from that, it was a lovely day (apart from the weather!), and we even managed to get some

pictures of everyone with Samara, with her NGT out! After the service, our friends daughter Megan, who was almost 19, and has DS, got to have a cuddle with her. I got a couple of pictures. Here is one of them. It was really nice to catch up with Andy and Dorothy (Megans parents) and just have a chat about things. It's amazing how much has changed just since she was born. They had to wait 6 months for her diagnosis to officially come through! I also got to chat with a mother from the mums group at church who has been given a high risk for Down Syndrome with the baby she is expecting in June.

2 days after the dedication, Michael had to head back home to do that dreaded thing called work! He caught an overnight bus up to the airport, so he never got a chance to see Alicia again - which tore him up a bit!

The rest of us continued catching up with family and friends over the next couple of weeks. We also bought some NZ lollies. That was the real reason for the trip. New Zealand has good junk food! Seriously though, it was really good to see everyone again, but hard too, not knowing when we will see them all again.

Just to make things interesting, on the Tuesday before we came home, Christiana whacked her fingers against the door frame, and was in quite a bit of pain. It didn't really settle over the next couple of hours, so I thought I'd better take her to hospital for an x-ray. As we were heading out to the van, I stumbled on the step and broke my ankle in 2 places!! Turns out, Christiana's finger was fine. She had it splinted for a couple of weeks, but it wasn't broken. As for me.....well, that was a different story! It kinda put a damper on the rest of the holiday. I didn't really go anywhere after that. But, I must say, it sure made things breezy for the trip home. I was whisked through customs, taken on to the plane first, then rushed through customs again at the other end! I also got to sit right up front where there was more room. Don't know if it was worth breaking my ankle for it, but hey, you've gotta love any advantages you can get in international airports!

Despite the seasons changing from Summer to Autumn while we were away, it was still pretty hot when we got home. Not much fun when you're in plaster for 6 weeks. I divised all sorts of ways of itching it. Don't know that the hospital would be impressed, but at least I got a bit of relief. Living in Australia, my biggest fear was getting fire ants in the cast! We have them living outside our house, and I worried about it every time I went out the door! Thankfully THAT never happened.

The next few weeks were pretty boring, and I got major cabin fever. Michael had to take time off work every time Samara or I had appointments at the hospital, which was a bit of a hassle. Good thing his bosses are pretty understanding.

The one outing I did have was to the Picnic on World Down Syndrome Day. I didn't get around much once we were there, but it was good to get out, and also to meet some other parents, adults children & babies with DS, and siblings. It was a beautiful day - not too hot though! The girls all got their faces painted. Even Samara!

3 weeks after we got home, Samara came down with RSV. She was really struggling to breathe, and had to go into hospital and on oxygen for a few days. Aside from the pain of seeing her suffering, we had the added hassle of my ankle. I still couldn't drive, and I couldn't stand to look after her either. So each day, Michael would drop me and a couple of the girls at the hospital in the morning (he was staying there overnight), then pick us up after work. Here she is in the giant hospital cot. (Made her look little again). One thing I have to say - I am so glad we live in a time when apnoea monitors are easy to come by! It certainly helped me sleep better when she came home. Mind you, all of our girls after Sara (#2) have been monitored, as Sara had apnoeas for at least 10 years.

OK. It is 2am. Probably time for me to get some sleep, insomnia isn't a lot of fun. But at least I have the internet to keep me company while everyone else sleeps.

New Zealand

2009-05-27T00:16:00.002+10:00

On a suitably hot and sticky (read, typical) Brisbane morning, we all (just barely) boarded our flight to New Zealand. Seriously, we got there 5 minutes before the check-in counter SHOULD have closed, waited 10 minutes in the line NEXT to where we should have been, then discovered they had closed our line early! They weren't going to let us on, except that we were travelling on NZ passports. The Asian lady behind us was turned away.

Anyway, 4 hours later, we arrived into a cold South-westerly (yes, that's the COLD wind in our part of the world!), rain and 16 degrees C. Samara burst into tears as soon as we walked out of the airport! She had never been cold before LOL.

Michael's brother had arranged a van for us to hire, and met us at Christchurch airport. We headed straight for Timaru, via the Golden Arches (which is definately more expensive in NZ than Australia). Personally, I was only interested in finding a decent ice-cream shop! Australia's icecream is nowhere near as good, is more expensive, and is not as readily available, or in as many flavours!

It was really nice to see our family and friends again. But it was pretty hard to see what once was our house, levelled to the ground:( Quite a few businesses had closed down. The first time I really saw any evidence of the financial crisis. We didn't actually get out much while we were there. Samara was sick for a week of our trip, and with the cold weather, I wasn't too keen on taking her out.

The weekend after we got there, we went down to Central Otago to help our oldest daughter, Alicia, move from Omarama to Christchurch for Uni. It was nice to see her, but it wasn't for nearly long enough! I wish we had the time (well, I wish SHE had the time) to just hang out, but I guess part of growing up is getting your own life. And besides, it was the week uni started!

The second weekend we were there, we had Samara dedicated at our old church. Mum had made her one of the gorgeous gowns she is famous for. Here is a couple of pictures: OK, maybe not. I've forgotten my Photobucket login, and we don't have the same email address any more!! Um, I'll have to try later, I've been sent away in disgrace!

Feeling Guilty

2009-05-25T01:18:00.002+10:00

Whoops. I didn't mean to take a week to get back here! Truth is, I have spent most of my computer time making digital scrapbook pages. I don't have the space here to get out my scrapbooking gear, so I have had to find another outlet!!

Anyway, back to my story. Over the next few weeks, Samara was a bit up and down with her feeding. For over a week we even managed without the tube. I really had my hopes up there, but then she started to get all sleepy and hard to wake up again. So that one didn't last. At least one good thing with me changing the tubes though - we got to take some pictures without it!

She has it in, in this photo, but after all the photos of first cuddles with her sisters, this was one of the first pics of her at home. Here she is in Mahalia's dolls pram!

Christmas Day was really surreal. We had always spent Christmas with a ton of family, and were rushing around everywhere. Our first Christmas in Australia wasn't so bad, because we had just been down to my brothers place in Young, where my sister was staying also. And then Christmas Day we spent with friends. But this Christmas was different. It was just us. It didn't really feel like Christmas. We went down to the Lagoon, and found a tiny spot of shade under the only tree left in the place! It was packed out!! And even then, to find that tiny place to sit, we had to go out on one of the pieces jutting out into the water - you should have seen us try and get the pram out there! I didn't go in the water, but the girls had a good time. Here is Sara giving Samara a hug after we had stripped her down to her nappy to try and cool her off a bit.

One of the best things about Christmas, was Mahalia's ability to make us feel like it was really appreciated. I was really happy to have gotten this picture of her opening one of her presents...

Isn't that totally awesome?! She had absolutely no idea what it was! I asked her why she was so excited then, and she said "cos it's a Littlest Pet Shop something-or-other!" - Out of the mouths of babes!

I also got a cute picture of Samara wearing a Christmas singlet that my friend Jo gave her. And look - No Tube!! That was during her good week where she was taking all her feeds from me or the bottle.

We didn't do an awful lot over the next few weeks. I wasn't too keen on exposing Samara to everyone's bugs and things. It was hard though. I wanted to take her out and show her off to the world! Let's face it, the world was missing out by not getting to see how gorgeous she is!

In January we went to Val Stares place for a family Above Rubies Camp. Val is the Australian Co-ordinator for Above Rubies, and she has a farm that she opens up to everyone a few times a year. This was our second time going. The first time, our tent got flooded when there was a torrential downpour while we were setting it up. (We were new to Australia then, and really had no idea about the weather patterns here - as the ad says it's 'the kind of weather only Queensland can throw at you'.) Well, not to out-do ourselves, but this year, we got to camp only to discover that our tent inner wasn't there - only the fly!! I don't think we were cut out for camping!! Anyway, the next day we had to drive to the Gold Coast and buy a couple of smaller (cheaper!) tents to last us the week! Both times we spent the first night sleeping in the 'lodge' which is a shed on the property. Unfortunately, I didn't enjoy myself as much as last time. It was hard having to express with a hand pump, sitting in the HOT tent, away from everyone. Also, sad to say, but there was that feeling of not being the same now that we had a disabled child. It was probably all me, to be honest. But I suddenly felt not as good as everyone else - like I was being punished for something. Like I said, it was really just my own sense of grief and coming to terms with it all, no-one did anything to make me feel that way. But it did put a damper on the whole week. I guess the trick is, to use the experience to help me grow, and not dwell on it in a negative way. There is a women's camp coming up this weekend, and if I could afford it I would go. But that's not going to happen:( Here is a picture I took of Bryanna when she didn't know I had the camera trained on her. She is watching an impromptu cricket game at the camp.

The camp ended on my 39th birthday. Only one year short of being 'old' by Bryanna's standards. Uh-Oh!

The next few weeks were much of the same as the weeks before camp. But, they were spent in major anticipation. On 11 February, we took off for our first trip back to New Zealand....

Growing and Getting Stronger

2009-05-18T12:36:00.007+10:00

The next few weeks were spent just fattening up, and trying to get feeding established. I was still pretty determined to breastfeed, despite the drs tell me she wasn't going to get the hang of it. But we kept persisting. Basically, I would express first (to slow down my milk flow) then give her a bit of a breastfeed, while monitoring her sats. If they got below about 60% we stopped the feed and finished off with a tube feed. She was also having thickened bottles as well. They wanted Samara to stay in hospital until she was having no tube feeds. This seemed a bit ridiculous considering how many kids out there are tube-fed. So we had a meeting with the drs, speechie, lactation consultant, transfer co-ordinator, nurses etc, and they agreed to let us take her home on tube-feeds. Over the next week I was to learn how to put them in, test they were in the right place, what to do in an emergency etc.

The Royal wanted to transfer us to Redcliffe Hospital, but I wasn't happy about it. All the research I had done didn't leave me very confident that she would get the best care there. Also, at RBWH, they have a parentcraft room. It is like a mini motel unit, where parents can spend a night or two with their baby before going home. If I transferred to Redcliffe, rather than parentcraft, I would have to stay in the maternity unit with Samara. I really didn't want to be put back in hospital, where I would have to spend a couple of nights in a room with 3 other mums and their healthy full term babies, when I had a sick pre-term disabled baby who I was learning to tube-feed. Emotionally I just wasn't up to it. They tried to get a Social Worker to change my mind, and I was all ready to go and see the Psych I had been under for depression/PND and get her to back me up. But thankfully they realised I wasn't giving in, and we got to stay!

Finally, on December 5 (Christiana's 14th birthday) we got to come home. One of the rules in the nursery, is that the only people (apart from the medical people of course) allowed to touch the babies are parents and grandparents. Needless to say, it was a long, long wait for her sisters who weren't allowed a cuddle for those first 2 1/2 months! You can imagine the joy (and the fights!) when they were finally allowed to hold her. Here is Mahalia having her first cuddle that day.

Life at home quickly settled into a routine of express, breastfeed (I noticed that she could cope for longer if I was laying on my bed, so would try that once or twice a day) or bottle feed, and tube feed. By then it was time to start the cycle over! But I was determined that whatever it took, I was going to do the best I could to give her a good start.

She was a very sleepy baby, and it took a lot to get her to wake for feeds, but this is where it was a real God-send to be able to tube feed her if we needed to.

Going into hospital in August, and being in air conditioning for so long, it was a massive shock to come home in the middle of a Queensland (read hot and humid!) summer. Some days, the only thing I could do to cope was take several cold showers! I tried to get out for a walk each day, but I would come home on the verge of passing out! We are blessed to be living right near a beautiful beach, and if we were lucky, there would be a nice sea breeze blowing. Here's a couple of pictures of our beautiful part of the city. Suttons Beach, above and the Sanctury Cove Lagoon to the right. The Lagoon is a big free public pool that is absolutely gorgeous! (so long as you don't use the toilets!)

Our new home was (is) a lot smaller than we were used to. 2 and a half bedrooms for 6 kids + Michael and I! By the time you count all the baby gear, it has been a real squash. But, it's a roof over our heads, and at least we live in a warm climate so aren't stuck inside all the time. Speaking of warm climate - we don't have air con here. A BIG problem when it's the middle of summer. Before long (and with a lot of pleading)Michael went and got a portable air conditioner. It wasn't the most efficient thing in the world, but at least I felt like I could breathe.

Apart from the heat, it was great to be home. I finally got to meet some of our lovely neighbours who Mahalia had made herself known to! We are truly blessed to live in a street with some of the nicest people! I think that it is almost worth being this squashed just to be living in this location!

And, that's the story of our homecoming. Later I will put up some more pictures......

Coming to Terms with it all

2009-05-16T18:48:00.005+10:00

The week or so after her diagnosis was a difficult time. Having to tell everyone. I mean, how do you tell people something like this, especially so long after she was born? I was really worried how people would take it. Especially some of the older generation in our families. I didn't want to say anything until we knew for sure, but then my sister texted me asking how Samara was doing. I didn't know how to reply. Sure, she was doing fine, and I could have just said that, but somehow I felt like it would be lying. So I did something that was pretty mean really. I told her there was possibly a problem, but the drs were doing some tests. Well, next thing I was getting texts from mum, dad, and another of my sisters. I hadn't thought about the fact that I was just getting them all worried that she was dying or something. So I told them what they were thinking. And you know what? They were all great! It's amazing how much credit I wasn't giving them!!

I told all the mums up at the nursery too. It was really good. In a place like that, we were all going through turmoil of some sort with our babies, so the atmosphere was so accepting and supportive. After getting over the initial shock, my friends were all great too. Although, one thing I found really hard was a couple of people that told us if we had enough faith, God would heal her of this! Sorry, but that really hurt. It made it seem that she had this because we didn't have enough faith - ie, that it was our fault. And that it would continue to be our fault as long as she wasn't 'healed'. Sara made the comment 'why? We like her just the way she is!'

Of course, there was the 'Why God?' questions that lurked around the corners of my mind. But I never believed it to be an accident. We live in a fallen world. These things happen. God knew before the beginning of time. It may have been a shock to me, but it never was to Him. And when I think of all the things over the years that had prepared me to be her mother....well, it just gave me a lot of comfort.

Anyway, that's a lot of text with no pictures. I feel in need of another picture of our gorgeous little girl!

Isn't she just adorable? I love how tiny she looks here! This was taken the same day as the other one in the teddy outfit. I kinda miss her being this tiny. I love how she is now too, of course, but there was something just so huggable, and kissable, and warm fuzzy inducing about holding such a tiny little baby!

I can't remember whether I noticed it before or after her diagnosis, but for a while I had noticed her oxygen saturation levels (sats) were dropping (desatting) significantly with every feed. This was when she was still being totally tube-fed. I mentioned it to the drs, who said they would keep an eye on it - but, truth to tell, they didn't. A couple of days after talking to them, she reached the age where they change them from a sats monitor to an apnoea monitor. I was pretty mad really. They said, but she's 35 weeks now - she doesn't need it. They were basing their decision totally on her gestational age, not her condition! I was pretty upset about that. Anyway, this was about the time that I started trying to breastfeed her. I wish I started blogging back then - maybe I'd be able to remember what happened and when, but I am being as accurate as I can. Well, around this time, I noticed that she was really struggling to breathe when I was feeding her. She would get a marked tracheal tug (where her throat was getting a deep hollow) as she tried to breathe for several 'breaths', and then she would gasp, breathe ok for a few seconds, then the cycle would repeat. I tried to tell the staff about this, but they weren't too worried. They said it was all just part of being prem. Thankfully a couple of days into this, the lactation consultant was sitting with me during a feed, and was quite concerned about it. WHY can't dr's learn to listen to mothers???? Anyway, at least this meant some action. We had her put back on the sats monitor for her feeds, and this confirmed that she was desatting to around 45-60% during feeds.

The next day, the ENT specialists came to see her. They said they could see some webbing in her throat. They arranged for her to have investigative surgery a couple of days later. They told us that she may need a tracheotomy. Well, that had me in tears! Mum's friend and her husband (who has a trach due to throat cancer) came to visit and prayed for her. Well, the great news was that when she went into surgery, there was NO SIGN of any webbing!! However, they said she did have mild laryngomalacia (which is basically floppy airways). Apart from that, everything looked fine.Here she is in the 'limosine' ready to go over to the Children's Hospital for her op.

We did have a big scare after the op though. She was in the Intensive Care Nursery (amazing how huge she looked in there after her few weeks growing in Special Care!) after the operation, laying on her tummy. When it came time for a nappy (diaper) change, we turned her over, and her oxygen sats dropped to the 20's! She turned blue, and the nurses came running. They gave her oxygen, but it took a while to come back up. You know that it's time to panic when all the nurses start to panic! And believe me, I did. We discovered that it was simply easier for her to breathe when laying face down (and when she gets a cold, we still put her face down). So she spent the rest of the day wearing her nappies backwards!!

These pictures were taken in NICU after the operation. I love the closeup of her face. It is the first time we saw her without the tube!

A few days after the surgery, Samara had a barium swallow. This is where she was feed formula with barium in it, which was x-rayed as she drank it. This showed that she was aspirating (breathing in) her milk. So this was the major cause of her desats. As a result of this, we went to a combination of thickened expressed breast milk (EBM) and tube feeds. We also fed her with a special needs Habermann bottle, which allowed us to control the flow. Another thing that had shown in the swallow study was that she would take about 30 sucks in a row without pausing. Normal is about 6!

By this stage, the whole Down Syndrome thing had just become a part of our lives. I was over the major sob-sessions (although minor ones still crop up from time to time!) I had decided to become pro-active, and search the net for anything we could do to help her. This is how we found the TNI and Changing Minds protocols I mentioned the other day. They weren't going to be 'miracle cures', but it looked like they would help Samara to have a better life. And, I think so far, that they have helped. She is not as sick as we were warned about, and she is pretty clever too, if I might say so myself LOL.

She had her postnatal hearing test at 36 weeks gestation. This is given to all Australian babies. They didn't have it when my others were little, so it was pretty fascinating. They use a probe taped to the forehead to measure brain activity, as they play sounds through little headphones. I called it her first i-pod. Take a look....Isn't that just so cute?

By this stage, she had reached the magic 1800gm too, so she was moved from the incubator to a cot. This also meant she was able to graduate from sponge baths to the real thing!

I'll leave you with a picture of one of her first baths....

A small digression

2009-05-14T14:29:00.000+10:00

I have been asked about the supplements Samara takes, and also the Changing Minds Protocol I mentioned in an earlier post. The links for these are:
http://www.nutrivene.com/ and http://www.changingmindsfoundation.org/

The nutrivene is a combination of vitamins and minerals that has been especially formulated for children with Down Syndrome. It views DS as essentially a metabolic disorder, which causes our kids to be short on certain nutrients. It is these deficiencies that nutrivene seeks to alleviate. The theory is that a lot of the symptoms associated with Trisomy 21 are caused by this lack of nutrients. Things like intellectual disabilities can be caused/worsened by lack of (for example) zinc - which is something T21 people are low in. It also helps by building up immunity, hopefully reducing the number and severity of infections they suffer. The website sells this product, so may be biased in it's claims, but while I don't see it as a miracle cure, I think that it does help.

The Changing Minds Foundation was started by a mother of a DS boy, who went searching for answers. They promote the use of Prozac, Ginko, Phosphatidylcholine, Focalin XR and Fish Oils to help with IQ. Their results so far are very promising. The theory is that babies with DS lose half the neurons in their brains by the time they are 6 months (this is known), and that these products help to rebuild them. They promote cell growth, concentration, memory etc. There are no proven clinical studies at this point, but then, those of us with DS kids don't have the time to wait and see over the next 15 years or so. Personally, I can only go by what has been seen so far. They don't sell the products - in fact, some are only available on prescription. They have a printout you can take to your GP explaining it in doctor-ese. They do sell a DVD that shows some of their kids in action before and after starting the protocol. Apart from the DVD, and, now, a couple of the products, the fact that most of the products come from the local chemist or health food store lends a bit more credance to their claims. (well, to my way of thinking anyway)

...chapter 2 of the saga

2009-05-14T12:03:00.000+10:00

The night Samara was born, I started coughing something awful. I was taken down to x-ray, and they found that my right lung had collapsed. The pain in my scar was horrific every time I had a coughing fit, but the physio's said I had to work at coughing it all up. The only thing that made me obey them, was I needed to get well enough to visit my little girl again! Finally, 2 long, long days later I got back to the NICU. By now, she was off the ventilator, and on CPAP, as shown in this picture.

You know, I hated being pregnant. The pain in my joints, the tiredness, the lack of sleep, being stuck within a 10 min radius of the hospital, etc. I just wanted it all over. But, you know, seeing her laying there so tiny and covered in monitors, tubes and machines, was pretty heart-wrenching. I felt so guilty for wanting it all over, and just wished so much that I could put her back where she belonged! Yet at the same time, I was totally besotted with this entire person that was laying there in this tiny little body. It was pretty fascinating really!

One thing they do with the little preemies, is insert their first IV line through the umbilical cord. Until this was removed at about 7 days, we wouldn't be allowed to hold her. But when she was 4 days old, I was standing next to her isolette crying. One of the nurses came over and said I looked like I needed a hug. She bundled her up in a ton of blankets, taking care to protect her UV line, and gave her to me to cuddle! What an awesome experience! But in all honesty, physically, it felt like I was just holding an empty bundle of blankets! She was lost in amongst them :)

Because Bryanna and Mahalia were born at 35 weeks, we had some experience of the various monitors, and tube feeding. For this I really am thankful - it made the whole experience a lot easier. Other mums were jumping every time an alarm went off - but I knew how to tell whether the alarms were false or not, which probably saved me from several heart attacks!

In the NICU, Samara earned herself the nickname of Feisty. She knew what she wanted, and how she wanted it. A trait that she still has! They had little pillows and supports that they would put around her to hold her in various positions that were to help with her development. Well, she was having none of that. She would literally re-arrange everything until she was happy, then plant her face against the matteress before going to sleep! Here she is giving Christiana a demonstration of how it's done!

After 27 hours on the ventilator, 4 days on CPAP and 3 days on increased oxygen in the isolette, Samara was finally breathing well at room levels, and was transferred to the Special Care Nursery. Not bad for only 8 days old, and 32+2 weeks corrected.

Here she is having a feed and a cuddle with dad in the NICU just after her CPAP came off. It was really nice being able to see her face (well, most of it!).

Once we got through to Special Care, we were asked to take place in the TIC trial they were conducting as part of the neo-natal research they do there. The trial involved babies who were born before 32 weeks, with no other known medical issues. It was to see whether babies did better when transferred from isolette to cot at 1800gm (the current standard) or earlier at 1600gm. The theory being that they may do better with more parental contact that comes with being in a cot. We agreed to take part, partially in the hopes of getting more cuddles!! At 1600gm a computer would randomly pick which part of the study she would be in. At 3 1/2 weeks she reached that first goal, as shown here. Unfortunately she wasn't selected to come out of her isolette yet:( But that's ok. The biggest disappointment was she was going to be too big for her first outfit by the time she did come out. So we dressed her in it anyway, for some photos and a cuddle with dad. It is a teddy bears onesie from Pumpkin Patch. It now belongs to her doll!

During those first few weeks, I was not without problems of my own. Firstly, at 2 weeks post-partum, I developed a kidney infection. It took a couple of rounds of antibiotics to clear that up. Then, a day or two after these photos were taken, I saw the GP again as I was still in a lot of pain. A scan was scheduled for the afternoon of 20 October.

The day of the scan I was particularly sore, so Michael took the day off work. We had already had a pretty hard week. The inteferring social worker at the hospital had managed to get us kicked out of Ronald MacDonald House because we didn't have a fixed address on the Sunshine Coast any more. I was really mad, cos I had been up front with them about it the whole time. We had even offered to pay our own way, if Nambour Hospital no longer felt it was their responsibility. But the social worker was treating us like we were trying to rip off the system to get free rental accomodation. Now, if you have ever tried to rent a house in Brisbane before, you will know it is not easy. Add to that the fact that we had 6 kids living with us, and it is darn near impossible. So here we were, with a couple of days to move out, and nowhere to move to. We had already arranged to borrow a friends house for a week while she was away, because Alicia was coming over from New Zealand, so we all wanted to be together. And, so it was, that this is where we were staying when the scan date arrived.

Anyway, I digress. Because I was in so much pain, Michael left me at our friends' place with the girls, while he went to the hospital to visit Samara and take her in some breastmilk that I had expressed. In the meantime I had a sleep.

At 1.30 he got back (1-3pm is quiet time, and no visitors allowed). He came and woke me up. I wasn't impressed. I wasn't sore when I was asleep, and my scan wasn't until 4.30! Anyway, he said we had to talk. The drs had told him they wanted to speak to us. You know, looking back, it seems really dumb. But my first thought was 'do they think we aren't doing a good job parenting Samara? Are we not there enough?' - really dumb - I was there nearly all day every day! But it goes to show that I was totally unprepared for what came next.

He said that they think she has Down Syndrome! Wow. That was totally unexpected. She was doing so well. She was lifting her head up when laying face down in the isolette. Aren't DS babies supposed to have weak muscles? They must have it wrong. Surely we would have seen it. She doesn't look it. Maybe they mixed us up with someone else. Maybe there was a mistake and she was swapped with someone else - yeah, that will be it. After all, I didn't see her for 2 days in the beginning, and she changed a lot in those 2 days, it's possible that all 3 name labels came off, and she accidentally got moved to someone elses isolette. Isn't it?? Where do they get off saying that about MY baby anyway? NOOOOOOO! Far out, I am still crying, writing about this nearly 7 months later!

As much as I HATE to admit it, I even thought for a very fleeting moment that maybe it would have been better if I had lost her right back at the start of my pregnancy when I had that bleed. How awful is that?! After 4 weeks of getting to know my perfect little baby, I was being told that baby wasn't mine after all. I was being given this defective model. I really felt like the Samara I thought I knew had died. I wanted THAT Samara back - not this imposter. To make it worse, I had considered adopting or fostering DS kids. And here I was rejecting the one God had given me. Boy did I feel stink. I couldn't fathom these thoughts that were going through my head. I guess it's one thing to choose to adopt a disabled child. It is quite another to create one. I felt so bad for her. It is not as altruistic to accidentally give birth to a DS baby as it is to adopt one. Gee, now I was realising that my ego was taking a bashing, and I was going along with it. But no matter how much I hated my selfish thoughts, I couldn't stop them. Then there was my grieving for the life Samara wouldn't have. I could only see her future as mopping floors for MacDonalds. No marriage. No children. No choices.

And yet, I know people with DS. I know how much better their prospects are these days. But I didn't know that those prospects are better than I thought. She COULD get married. She MAY have children. She CAN go to university. But back then, I had so much less knowledge than I thought I did.

Mum works in a group home for adults with Down Syndrome. They are lovely people. But I didn't want their lives for my precious baby. Of course, these adults were all born in a time when institutionalisation was the standard course for DS kids. There was no early intervention. Today's knowledge means her prospects are so much better.

I went to my scan at 4.30, still bawling my eyes out. They thought I might have appendicitis and sent me to the Emergency Department. Well, everyone knows what those places are like. The waits are awful. But I must give them credit. After telling them about Samara, they were more than happy for me to come and go, so I could get in some time with her during the waiting times. After 12 hours and a CT scan, they decided that it wasn't my appendix they were seeing, but a fallopian tube that had swollen to the size of the appendix. I was admitted to the maternity ward. One advantage of being re-admitted, is that you get your own room rather than sharing a room of 4 beds. So at least I had some privacy to do my blubbing!! It was also nice to be so close to Samara again. She was just 1 floor below me.

On the sad front though, I wasn't staying with Alicia any more and she was going to be going home soon. You know, the girls all took the news in their stride. They saw it as no big deal. Which is a good thing, but they couldn't understand what I was so upset about. It was probably a good thing I was in hospital, so they didn't have to see me in my grief.

Something I didn't know before this was that there a lot of health problems associated with Down Syndrome. Heart defects, thyroid problems, muscle weakness, breathing problems, low immunity, higher risk of leukemia, higher risk of coeliac disease etc. I wasn't really ready to cope with that knowledge. She had an echo done that day, which showed only a very small heart defect, that would not cause any problems. So that was a huge weight off.

Well, I am feeling a bit emotionally spent now, so will continue later......

The Australian Dream begins....

2009-05-13T17:27:00.001+10:00

I have spent the past 15 hours or so reading the touching story of Kayleigh. http://kayleighannefreeman.blogspot.com/ If you have a box of tissues and a lot of time, be sure to check it out. Kayleigh was born 12 weeks early on 23 June 2008 - exactly 3 months before Samara was born. Yesterday, she lost her fight for life.

Reading Kayleigh's blog has shown me that a blog is so much more than a journal. It has the potential to reach others. To help them through their own journeys in life. I have certainly been touched by this little girl who I didn't even know existed 24 hours ago.

While our journey hasn't been as heart-wrenching as the Freeman family's, it has been a difficult year. A good year too, but interspersed with a lot of anguish and whys. Maybe, by sharing our story here, someone else can be helped.

Please bear with me as I catch you up with the journey we have been on over the last 22 months. It may take me a while to catch up, but bear with me a while...

First, a quick intro. Michael and I have been together since high school. Our first daughter, Alicia (now 20) was born when I was just 19. Over the next 10 years, we had another 5 girls. Sara (17), Renata (16), Christiana (14), Bryanna (12) and Mahalia (10).

We have had our fair share of health issues along the way. Alicia spent most of her childhood in and out of hospital with asthma. Sara was a near-miss cot death, who had her first apnoea (stop-breathing spell) at 6 weeks of age. She was on a monitor until she was 11 years old. Renata was born with a small VSD (hole in the heart), and was in the NICU at 2 weeks with pneumonia. At 10 years she was diagnosed with Aspergers Syndrome, ODD, and Dyspraxia. Christiana is pretty healthy! YAY! Bryanna has Learning Difficulties, and most probably Aspergers Syndrome. Mahalia spent the first 2 years of her life very sick with breathing problems. She was on nebulisers 4 times a day. Then, at 2 she was diagnosed with multiple allergies. We modified her diet, and haven't looked back. Today she is able to eat a normal diet with minimal problems. Christiana, Bryanna and Mahalia were all preemies (36, 35 and 35 weekers)

All of our girls are/were homeschooled. We are a Christian family, and this is where my hope springs from that we can reach out and help others. Until 2008 we lived in our homeland of New Zealand. And this is where this journey begins....

July 18 2007. Renata, Christiana, Bryanna, Mahalia and I arrive at Brisbane airport. We have just embarked on a totally new and unknown journey. Michael and Sara have stayed in NZ another 4 weeks to finalise the house sale and finish up at work. We are going to stay with friends in a small town 4 hours north of Brisbane. Michael has no job to come to. All we have is a container full of stuff from NZ and some money from our house sale. We use this money to buy a caravan and a bus. This will be our home until whenever......

After 4 months with our friends, things were getting a bit strained (as things do when you throw 2 families together like that!). We need somewhere to go, but know no-one. The engine on our bus had died, so we couldn't even go on the road. We had thought Michael would have found a job by now. But we have no money, nowhere to go. I lost it at that point. But only for a couple of hours. The one thing we did know, was God had told us to move here, and he would find us a home. Through friends of friends, we had found somewhere to move by the end of the day. And so, the following week we moved a couple of hours down the coast.

During the 4 months we were there, Michael found a temporary job on the Sunshine Coast. So we found ourselves a rental house and for the first time in 8 months lived in a real house! We no longer had to stomp our feet and wave torches around watching out for snakes, spiders and toads on the way across a field to the toilet!! (Believe me, that was the biggest plus!)

2 weeks later, on Easter Weekend, I found out I was pregnant! After 9 years, it was a bit of a shock, but a happy one. At least, until the hyperemesis set in! The main thing I remember from that time was curling up on the floor of the public toilets at Nambour Hospital, for 5 hours while waiting to be seen. Not a good look! I had a scan at 10 weeks, and everything was looking good.

At 13 weeks I had a bleed. I was pretty terrified and rushed off to the dr. He thought maybe I had placenta previa. I had that with Sara, but it moved out of the way, and wasn't an issue. I figured that would be the case this time too.

WRONG. After another bleed at 17 weeks, I had a scan at 18 weeks. I was diagnosed with grade IV placenta previa. In my case, this meant that the placenta was sitting right over the cervix, and an additional 3.5cm over the other side. The OB told me there was no way I would be having this baby naturally, and would probably have a preemie, with my history. I was put on moderate bedrest, so spent my time surfing the net for info on placenta previa and premature birth.

At 26 weeks I had a bleed, and was admited to Nambour Hospital. (I should mention here, our lease on our house was up the next week, so we were in the throws of moving too!) I was given steroids to strengthen the babies lungs. The next night I had another bleed, so was put in an ambulance and sent down the the Royal Brisbane Women's Hospital.

I spent the rest of the night alone in a freezing cold birthing room. Not knowing if my baby was about to be born, or even where there was a midwife or dr if I needed them! Needless to say, I got to morning, and they transferred me to the maternity ward.

With the move coming up, Michael was too busy to get down to me straight away, but somehow, he managed to organise some help with getting the house sorted, and thankfully we had arranged storage for our stuff just a few days before. Our plan had been to rent a holiday house on Bribie Island just north of Brisbane while we tried to find a new house (by this time, Michael was working in Brisbane, and had been catching the train down each day). Then I was told, that I would not be going home for some time yet. On the Monday (the day we had to vacate our house) I would be transferred to Ronald MacDonald House until the baby arrived. And, to make things worse, they could only take Michael and I. They didn't have a bigger room available.

Suddenly we had to find homes for 5 girls! After some desperate phone calls, we arranged for 2 of them to go to our friends we stayed with when we moved over. The other 3 went to another friend who we had only just met. Thankfully we had gotten to know them well, and they were friends of friends. We cancelled the holiday home, and became officially homeless!

The next few weeks went by without too much trouble. Well, except that my weak joints were playing up big-time and I was in braces for my wrists, ankles and knees! A C-Section was scheduled for 34 1/2 weeks to try and avoid the risk of going into preterm labour at 35 weeks again. A scan at 30 weeks (see picture) showed that the baby's growth had slowed. Not enough to be alarming, but enough that it might mean moving the birth up to 32 weeks if things didn't improve.

Turns out that was a pointless worry. At 6am on 23 September, at 31 weeks and one day, I had a massive bleed. It took 5 minutes for a crash team to get to Ron's house. By then I was passing out from blood loss. You know on TV how they slap people across the face and tell them to stay with them? Well, they really do that!! LOL Anyway, the Ambo's arrived a few minutes later, and I made the massive ambulance trip 50 metres down the road! By the time we got to the hospital, I was going into labour. A decision was made to do an emergency cesarean. I was knocked out, and woke up several hours later, after a couple of blood transfusions. The first thing I thought when I woke up (having had 6 natural but excrutiating births) was 'why on earth would anyone choose a cesarean? It hurts like ^$%#!' Not a pleasant experience.

Anyway, Samara Eliana was born at 10.21am weighing in at 1500gm (3lb 30z). She was not breathing so was bagged, then ventilated and taken to the NICU. It wasn't until 4pm that I was vaguely with it enough to fake being well enough to go and see her! She was so tiny. Just like a little doll. The photo really doesn't do justice to her size. Her head and trunk could sit in Michael's hand with her legs hanging off the end. She is also looking plump here - this was just fluid, that drained over the next day or so, leaving her all skin and bones! This picture was taken by the NICU staff just after she had been set up with all her monitors etc.

To Be Continued...................

The weekend

2009-05-11T14:18:00.000+10:00

Well, I missed out on going to Movie World with the rest of the family, cos I had awful sinus pain. But apparently Samara had the time of her life going on rides and stuff. She got all hyper and tried to tell me about it when she got home. She was babbling away and all excited. It's amazing how good she is at expressing herself!

Sunday was Renata's 16th birthday, as well as mothers day. Renata had entered a competition to win tickets to the Jonas Brothers 3D Experience movie, and won 4 passes. So I took her, her friend Rebecca, Christiana and Mahalia to Chermside Megaplex to watch that, while Michael and I went shopping for scrapbooking stuff (mothers day present!)

Got home to find that Bryanna had taken Samara for a walk to the neighbours in the new dolls pram. She looked so cute!

Today has been a slow one, with me just updating my photography site, and catching up with people online. Samara is a bit tired today. She slept til nearly lunch time! Mind you, she fed heaps and heaps last night! She wasn't particularly keen on doing her physio today either. Didn't even lift her head during tummy time, and just lay there when we were doing the rolling over exercises. Hope she's not coming down with something.

Some Random Bits

2009-05-05T20:23:00.000+10:00

Today I bought something I have always wanted. A Silver Cross Classic Dolls Pram. Now, you may be thinking I am too old for a dolls pram. But that's why I had so many girls!! And now, with the possiblility that Samara will be into her dolls for ever, I have finally gotten my chance!! I got it off ebay, and will pick it up on Saturday. Now, does anyone know how I can put a smiley of the happy dance on here??!!

Bryanna had a dressing changed on her burnt hand today. It is so horrible to watch. They scrub off all the old skin, and it really hurts her. On the good news front, she is no longer in a splint, and just has a bandage now. It looks like it is healing well, so hopefully she won't need ongoing treatment.

Samara did her first drawing today! Renata gave her a pen and held a pad in front of her. She didn't take long to figure out what was happening! You should have seen her. She was concentrating so hard, and was not amused when it was taken away. I have kept the picture to put in her scrapbook.

I find it totally amazing how quickly Samara catches on to things. She has sussed her musical cot light thing. Within about 10 minutes of getting it, she had learned which button turns it on. Now when she wakes up in the morning, the first thing she does is leans over and turns it on! The other day we bought her one of those suction cup rattles that sits on the tray of her bumbo seat. She was so funny. She batted at it, then sat back to watch what it did. But it stopped moving as soon as she stopped batting! It didn't play music, it didn't flash lights. She looked at me as if to ask what was wrong with it. I guess you could say she is definately a child of the 21st century! She even tries to get the spoon of whoever is feeding her. It goes straight in her mouth too. She is such a clever wee thing. I find it hard to accept the fact that she is likely to lose that. I am hoping that the Nutrivene D helps to at least reduce the damage she is likely to suffer.

I have been doing a bit of research, and may look at starting her on the Changing Minds protocol. This involves her taking Ginko and Prozac. It is supposed to help build neurons in the brain. I'll have to keep looking into that one. May discuss it with the GP and see what she thinks.

Anyway, the crime shows are starting. Which means I'm outta here!

Why Bloggers Syndrome?

2009-05-05T00:50:00.000+10:00

These days, it seems like everyone has a syndrome of some sort. So I figured, why can't I have one too?

After years of having Chronic Fatigue Syndrome, I decided it was time for a change. So now that I have somewhere to put all my ramblings, Bloggers Syndrome it is.

Speaking of Syndromes - we've got our fair share of those too. Renata and Bryanna have Aspergers Syndrome. And Samara has Down Syndrome. Sara was a near miss for Sudden Infant Death Syndrome (SIDS). And the females in my family (me, the girls, my sisters, mum, aunts etc) all have Ehlers-Danlos Syndrome (20 points if you can figure THAT one out! LOL).

As an intro to those who don't know us (yet), my family consists of me (Carolyn), dh (Michael) and our 7 beautiful daughters - Alicia, Sara, Renata, Christiana, Bryanna, Mahalia and Samara (our only 'Aussie' who was born in Sep 08 at 31 weeks). We live near the beach in Brisbane, QLD, Australia.

We are a homeschooling Christian family. We moved to Australia from New Zealand in July 2007. Michael is a computer geek, and I am a SAHM, and am just starting out on a new business venture - Special Needs Kids Photography. I am pretty nervous about it - I've never been one for much self-esteem. But the one thing I do know is that I love working with these wonderful children.

I will try and pop in regularly. Not sure if what I write will be of any interest to anyone, but hey, at least I can come here to gripe rather than to my family ;)