Thursday, July 30, 2009

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

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.....

Monday, July 27, 2009

The Joys of Respiratory Problems

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.

Saturday, July 18, 2009

2nd Anniversary of our immigration

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?

Thursday, July 9, 2009

Going on a Car Hunt

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!