Thursday, December 30, 2010

On the last 4 months

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.......