Monday, August 31, 2009

Sunday, August 30, 2009

On its way!

So I've ordered the head bumper and have recieved comformation that it has been sent.....

I also ordered a bubzilla sling for hip carrying.




Zach is getting so heavy and I need a little extra help to carry him around - mainly when I just want to run into shops etc and don't want to lug the pram out. That is also sent so I should have the two of them shortly! Yippee!

Friday, August 28, 2009

Just a quick update

more to come tomorrow....

Today we saw Dr Lowe. Booked in for Botox for his Abductor muscles. December 14th at this stage but Dr L said that will change as he is opening up some more places - expect it in the next month to month and a half. Watching his calf muscles at the moment and reviewing them again in a few months times, he doesn't want to do them right now. He wants him in his AFO's for at least a month before the review. Other than that everything is great and he is very happy with Zachary's progress.

The trip to Sydney was long and tiring with lots of snow traffic! Plenty of phone calls today from O/T, DADHC case worker etc. The one day when I'm really busy! We are heading into DADHC on the 9th of September to road test some wheelchairs. Appointment with The Spastic Centre to do some 'before botox' measurements and also need to meet up with our Physio to do some measurements for his wheelchair. Busy, busy and just when I thought things were going to quite down again for a bit. On top of all that we have our regular physio, our early intervention, we need to visit the audiologist (for both Zach and Anna) and Anna has appointments too! The main one being the Eye Clinic at SCH in a couple of weeks. Argh, 'life with Special Needs' is becoming a real reality now - full steam ahead.

Other news, Ashlee got through another round with Athletics. She is now competing in Wollongong on September 17th! I'm so proud her! Between her skill with netball and her brilliant athletic ability she is going to go far! I have no doubt her future will definitely involve playing or teaching some kind of sport.

Spoke to Mitchell today. Missing him like crazy! He got a 4 wheeler motor bike from (D)ExP for his birthday and he has been spending every waking minute on it apparently! It scares me a little but (D)ExP is very responsible with safety so that puts me at ease a bit.

Oh, and one last thing......we need to get one of these....



$69 from here.....Dr L is a bit concerned about Zach falling a lot. 99% of the time its his head that takes the hit - onto tile! So mainly when we are at home he must wear a 'Head Bumpa'. Super fashionable! hehehe.....

OK, not such a quick update but photos tomorrow! Fires on the side of the highway and all!

Wednesday, August 26, 2009

A happy linky link

before I turn in....

I've just spent the last 10 minutes OK make that 30 minutes browsing this super, wonderful, cheerful, colourful, delightful blog ::

Color Me Katie




Its wonderful....did I already say that?? Run over there and check it out! Super creative too!

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Lovin' Meet Me at Mikes at the moment too!

Yippee!

Today I had a meeting with the lovely Daniel from our local counsel. He is the coordinator of the Disability Services and in turn organises the respite care. Now I must say Zachary is not a high need demanding child at the moment (well not more than any other 2 year old!) but he some special needs that do take up a lot of time as many readers of this blog would totally understand. So I have started Zach (and Anna of course) in daycare one day a week to take some pressure off. I can go and do the exciting things like grocery shopping in complete peace (and buy way to much stuff because I have time to just browse the isles - eek!). DADHC kindly contacted the counsel to inquire about respite and that was what today was all about. They will pay for his time in daycare - more than just one day if I feel the need - you can probably understand how happy I was to hear this! Daycare is sooooo not cheap and even after the Centrelink rebate it is still costing me a pretty penny to send the three there. Without going into detail lets just say it has three figures. I was able to get a day of Preschool for Mitchell on the same day so I'm like totally kid free! Anyway it was an awful amount of paper work but its done now.

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Mitchell has gone with (D)ExP until Sunday. I miss him already and he has only been gone for a few hours! I still have another 4 days until he is home again. I must say that I do really appreciate the break as Mitchell has been very testing lately. I can totally understand, he has been through a lot recently and it must be hard for a 5 year old to understand. First in comes these two little babies into his life. They needs turn out to be much more than we expected. Just when he feels that things may have settled down his Mummy and Daddy stop living with each other. I'm kinda glad my parents split up before I was old enough to know any different. My poor little guy, it really breaks my heart!

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Not much else going on here at the moment. Getting ready for the trip on Friday. Just normal things.....For now I'll leave you with these.....






Tuesday, August 25, 2009

The last few days

We had another visit with Emma and Damo for Physio. They are brilliant and Damo always has Zach in hysterics! Its so funny to watch. They make therapy so much fun for him so I'm trying to what they do at home as Zach hates doing his stretches and therapy for me. From what I hear that's not unusual though. Our main goals at the moment are to teach Zach to sit properly and to crawl properly. If he doesn't do those two things we don't hold out much hope for him ever walking. Our main therapies are stretching, ball play - where he lays over the ball, trying to get him to stand holding on to a hula-hoop (without me hanging onto him!) and we are using a 'wobble pillow' to try and get him to learn some balance (which he has none of, nil, zilch!)




Our days seem to be consumed with therapy or some kind of appointment at the moment but it hopefully will pay off in the future.

Today we were meant to be picking up Zach's AFO's but due to some funding stuff ups we now have to wait another month. Hopefully they will be ready by then. So instead of going to The Spastic Centre's Orthotics Clinic we went to Early Intervention instead. Last fortnight they had a professional photographer there and today I got to see some of the gorgeous photos he took. Next time we will pick up a disc with all the photos on it. I'll share some, they are so special.

On the way home (its an hour each way) the little ones slept leaving me with complete quite!



(And no I didn't notice until we got home that she had taken her arms out of the straps! Ahhhh)


(Zach snores too! Oh and excuse the McDonald's box - its a fortnight treat thing after EI)

Tomorrow Mitchell goes with (D)ExP until Sunday leaving me with only the twins and of course Ashlee - who is ever so helpful (no I'm not being sarcastic) - to take up to Sydney for the day to see Dr Lowe. Looking forward to seeing him and showing off the progress Zach has made since we last saw him 3 months ago! I was hoping he would have his AFO's but that's not to be.

I'm also looking into buying some new convertible booster seats for Zachary and Anna. I want the CarGo one that Big W had in their catalog but in usual Big W style they didn't get any in and are not planning to - WTF? Why have it in the catalog than!! I want that one because it is the narrowest on the market. Mitchell currently has the Maxi-Rider and although I could just buy two more of them they are not going to fit across the back seat of the car. My other option is to buy two of the Maxi-Rider AHR's and move Mitchell into one of these.....


Infa Vario Max Booster

I think that they will all fit, I'll just have to do a few measurements. The investment of over $1000 - worth it? The three other seats will be sold. Or I can get two of these....



Infa Comfy Cruiser

and not the Maxi-Riders. They are cheaper but would like to do a little research first. Anyone tried any of these?

Lastly, Ashlee sent home from school again today sick. We are heading to the doctors soon to have a good health check up and see if there is any underlying problems....

Alright, dinner time!! 'See you' all later!

Sunday, August 23, 2009

Saturday, August 22, 2009

A lot of nothing and some updates with pics!

I mentioned in a previous post that Zach fell in the bath, breaking his cute little front tooth in half...I still feel incredibly terrible about the whole thing but slightly better since we took a trip to the dentist yesterday and 'made it all better'. She checked that he hadn't pushed it in too and no thankfully he hadn't. After pulling up at the hospital - where the dentist is located - I decided to take some before shots before. You know remember the incident but its not like I'm going to forget really is it. I'm going to be looking at that darned half tooth for at least the next 3 - 4 years!



Not that you can't see it but here it is a little closer....



Really he and lucky he didn't knock it right out!

OK, that's done. I'll get an after shot soon. Nicely smoothed off, no more pain while breastfeeding! Yes, my dear sweet little boy still breastfeeds. Its not like I haven't tried to wean, Anna self weaned at 18 months. Zachary just will not give it up without a fight and right now I'm in no mood for fighting. I figure once a day (rarely twice) is OK right now, he always has a drink before bed at night. His 'booby time' as he calls it....lol.

Now onto more bad news. Zachary was supposed to be getting his AFO's this week. I was really looking forward to it, kind of. Yesterday I got a phone call from Stuart Kerr to tell me that PADP haven't sent him confirmation yet that our funding has been approved! Ahhhhh! So that means it is going to be at least another month before he will have them now. I'm calling them on Monday to inquire about it and also ask about our bath seat. I got a letter nearly 2 months ago letting me know that funding was approved and the chair would be out to us (or our O/T) shortly. It still hasn't arrived.....

Good news this time.....Zachary's speech has really taken off! I'm over the moon at how much he talks now and how much clearer he is! He now sings 'Twinkle Star', 'Old MacDonald' and 'The Tickle Song' along with some others and counts too (he gets to about 8)! We are also hearing some of the alphabet - up to about G. I'm stoked! Although Anna had no speech problems I'm also pretty impressed with her vocabulary and counting. My sweet little babies are growing up way to fast! Were did these little babies go?! (Time for a bit of reminiscing....)

I will one day, hopefully soon, do a little post about how Zach and Anna came into this world. About the 48 days we spent in NICU/SCN. The ups and the downs of their first few weeks of life. It still is hard for me write about this sometimes.

Ventilated for the first 24 hours....
Day 3 and Zach is trialed off CPAP for a few hours...


Unfortunately by that evening he was back on it.....Spending the next 5 days on CPAP before finally 'breathing easy'....


Miss Anna - day 2. Anna was never ventilated.....



Day 3....


Day 13 and I'm finally able to hold my two little bubs together....



Anna and a horrible picture of Mummy at nearly 4 weeks old....



And Zachary (with Mummy looking horrible again) at about the same time...



Oh I don't miss those days - life 24/7 in the NICU & SCN, but I miss
those days when there were so little if you know what I mean.....

* * * *

Mitchell is with Brett at the moment and will be back tomorrow. I've enjoyed the peace and quite but I miss my boy like crazy! He has started Preschool again and loves it.....

Lastly please excuse the quality of the photos and the randomness of this post in places....lol.

Monday, August 17, 2009

Think thats enough...

for now.

I've done some major blog adjustments and I think I'm happy with it for now. What do you think? Should go into business shouldn't I?! Hahahaha.....

See you all later!

Busy busy

I've been playing around with my blog this morning.....when I shouldn't have been! Do you like it?! Now I'm going to head off and get some house work done, fold those clothes that are sitting there calling me. Get the dishes washed (man - why can't Mum have a dish washer?! Oh right she does but I guess {she} is out of order at the moment! Hmmmm.....) I need to get some more washing done and do a general tidy up than its off to Housing for an interview. Thankfully we have no appointments today.

Had a really hard night last night. Zachary woke at nearly 1am wanting to feed - I'm desperately trying to wean him but with little success. After giving him a small feed I cut him off which turned in an all out screaming match. After a little while he had woken up Anna too and then I had all three little ones in my, settling down (and giving up I guess) at around 3am! Mummy - 1, Zachary - 0. I'm extremely tired today and just want to sit around but life moves on and I better keep up with it.

Also did I mention that Zachary fell in the bath last night and broke half of his front tooth off! So today I'm also calling a dentist to see if we can maybe get his tooth smoothed out. Its really sharp! I feel terrible for my poor little man and quite guilty but I guess these things happen. Hopefully his new bath seat will turn up soon and I'll be able strap him down. As much as he loves swimming around in the bath he also loves to stand up at the side and walk around, he just isn't stable enough for that. Oh the joys......

This is the bath seat we are waiting on



Next up is a wheelchair......bath chair, wheelchair, AFO's, Walker.....is it ever going to end?!

I {heart} my new post title font!

Its after 1am and I can't sleep so here I am rambling on again....

Today was a total nothing day. In fact when I think about it I can't actually think of a single productive thing I did today! Don't get me wrong I have plenty to do - like folding the basket of washing sitting inside my bedroom door and getting that all put away. I guess I just needed the day off - that's a good enough excuse isn't it?! Oh no, I lie! I did do one productive thing today and that was completing the invitations for Mel's baby shower! Oh and I found some more things I want to try out on the net.....

Tomorrow is more house hunting, with some help this time but I'll go into that later. We are having a hell of a time trying to find a suitable house that is all one level, has at least some yard for the kids to play in and isn't some stupid amount of money! I can not see how people can afford to pay more in rent than what most people make in a week. It so ridiculous!

Anyway, The Spastic Centre called to schedule our next visit to the Orth. Clinic for the 25th of August. We pick up Zach's AFO's! Yippee! Then we will be off to see Dr Lowe on August 28th.

Wednesday, August 12, 2009

Look! I now have a sig....

Getting pretty sophisticated here!

ETA: and I've been fiddling with my post headers too! Really should be doing something else.....

Tuesday, August 11, 2009

Couldn't be bothered

....with a title that is.

Just been having a bit of a browse on face book and I tell you it has made me quite depressed! Even the girl that was the over weight, ignored, laughed at and teased girl (sorry to say but there was one at my school - like most schools) is married with a couple of children and smiles all around! It just makes me feel like I have failed - well, I have failed! Look where I am now. Oh, to turn back time - but I wouldn't give my children back for anything!

OK, moving on to a much happier note!

Today we had our first appointment with a private physio and it was brilliant! VERY worth the $75 a visit. They are a Physio and Rehab team that work together and Damien (Rehab) actually has CP himself. They have really given me renewed confidence and a better long term out look for Zachary. We now have some very specific stretching exercises to do with Zach while we play or read books and some great general ideas for things to use around the home that might help him.

Zach is funded through DADHC (Dept. of Aging, Disability and Home Care) for free services like Physio, O/T and a Speechie but I really felt we were being left behind. I felt that Zach had so much more potential and with more intensive therapy things might be different. DADHC just doesn't have the resources to be able to keep up with everyone so this is the next best thing. We will still be utilising DADHC's services when ever we can but in the mean time both Emma and Damien feel that Zach has excellent potential and are very keen to start working with him. To tell you I am stoked is an understatement! Hopefully for future appointments I will be able to attend without Mitchell. Sounds terrible I know but when we are at therapy it is so Zach orientated that I think Mitchell feels very left out and so he tends to play up. Anna comes but she is so used doctor visits, therapy visits etc that it is just normal for her - although she is very protective of her BIG brother Zach when we meet new people. Tomorrow we head to Cooma for our Early Intervention. I'm still attending these until we can sort something out locally.

Today was Ashlee's first day at her new school. She doesn't have to much to say about it other then it was fine. This will be her 4th school in 6 years! I'm pretty confident she went fine though. Ashlee is a very confident and happy girl and gets along with almost anyone.....

Better run, its late and Zach is crying...


Friday, August 7, 2009