Daily ritual

Every morning Owen checks our chooks and then toddles off to the get them some food, it is such a simple thing but it is still makes my heart smile, I know you Ds mummas will understand :)

hearing talking reading

So its been 4 weeks since Owen had his ear tubes put in and this time we noticed a difference within 2 days, with him trying new sounds and his attentiveness, it was almost painful to see, it made us realise just how poor his hearing had been in the months before the operation. In the last week we have noticed Owen repeating words we say, although its not clear words yet but definately he is getting the inflection right or the syllables right - music to our ears !


Also we have had an iPad for a week today - we got it through some therapy funding that became avaliable, (which involved a mile of paperwork but so worth it ). It has been amazing to watch Owen learn to use the iPad. He and Cy sat together and without any prompting from me they worked out together how to use the touch screen. I am now on the look out for good apps for Owey.


I already had my eye on the Special Words App based on resources from Down Syndrome Education International. I had always meant to download, print and laminate the resource pack from them but never got around to it (just too many steps involved there!). So this app was perfect for us.


The app is good it starts out with matching pictures to pictures, then words to pictures then word to word. Owen has been sight reading words from Your Baby Can Read DVD's but has been able to transfer that knowledge to this app and what is most exciting for me is hearing him trying to say the words! Visuals are really important for Owey, somehow it really helps to short circuit his dyspraxic tendancies so we have been hearing lots of new word attempts using this app. Anyway here he is rock'n it....

Return from Brisbane

Back from Brisbane a little worse for wear, we had a slow trip this time, more stops, more traffic, generally things seemed to drag especially on the way back gettting out of the city was a so tedious, I have forgotten what peak hour can be like. So it took 7 hours to get home yesterday and we are all tired and Cy seems to have picked up a tummy bug.......

But the good new is Wow the podiatrist is stoked with both boys progress since seeing her 3 months ago ! She measured the boys hip, knee and ankle flexability and they had all improved - (both boys are hyper mobile)- Cy is even in the normal range now - an improvement of between 20 and 30 degrees. He still needs to wear his night splint but there has also been big improvement in his reflexes in his right foot.

She is very happy with the way Owen is using his legs and body overall and she can see he is engaging the right muscles to do the job - which means he will develop as normal-a-gait as possible this is important as it reduces the wear and tear on the joints which means he can stay active as a adult.

Anyway we had a great time in Brisbane both boys LOVE trains so rather than drive into Museum we decided to go in by train

Waiting at the station

Mr Cheese is so excited about catching a real train

Owey eventually won us over and we got him out of the stroller, by the time the train arrived he had made friends with everyone on the platform, waving, blowing kisses and being cute

So we get off at the Museum stop, to see a huge sign draped over the building CLOSED for Reno's ptbbbbbbtttttt.

So we strolled along for a while and found this fantastic water park, we didn't bring bathers but that didn't stop us, or the other 3 families that striped our kids and let them run round exploring (I mean cause really, their clothes would have got wet otherwise - you just can't keep the kids out of this water park) and the boys thought it was fantastic.

Then we had some lunch and the boys found this little car out the front of a lollie shop.
I couldn't help but put $2 in

Then it was back to the train station but poor little Owey had crashed by the time we got to the platform

The cosy little BandB we stayed at was perfect and we manged to relax and enjoy it, in 4 months time we have to back to the podiatrist it will be Febuary and Stink'n hot in Brisbane by then so another visit to the water park will be on the agenda, for sure.

Gobbeldygook to you?

For all the joy and delightfulness, the surprises and the laughter sometimes, sometimes I wonder if I am fooling myself.

There have been a couple of moments this past week when Owen just looks at me when I ask him to do something, granted they have all been new tasks for him - when I realise he doesn't' understand what I am asking, I have to guide, hand over hand and show him what I want him to do. Its all simple stuff like - put your cup in the sink - that kind of thing - and he doesn't' get it.

Then I make excuses - like he probably doesn't even know what the sink is - just that I am chained to it for part of the day (we don't have a "real" dishwasher).

And I think I have been upping-the-anti lately, I am expecting more of him, but maybe I am expecting too much and I have to slow down a little, take it step by step. Its just he seems old enough and clever enough in many respects to understand and yet if its new it just doesn't click CRUNNNNCCCCCCH everything comes to a screaming halt. I am afraid, its the intellectual disability thing again, what does it mean for MY SON.

I guess on the positive side he does catch on quickly once shown/guided on how to do something new - he puts all his dirty tissues and wet nappies in the bin when I ask him to and has been doing that for ages. But its a bit like living with someone who doesn't understand English, they are perfectly capable of understanding what to do once shown but if you just gave them verbal direction alone they are lost.

We dont' know any kids with DS under the age of 11 here, so I don't know if this is a normal thing for our kids, I want to know its normal but I am terrified its not !

Ahhh, sometimes this ride is just like a wild roller coaster.

Anyway I don't' want this to sound like I am not enjoying Owen at the moment because I am he is just so delightful or that I am struck down with fear about intellectual disability because I am not, I know it is part of his life, of our lives. But when he doesn't understand, like I think he should, it is like a sharp reminder of it and I would be lying if I said it didn't hurt or worry me.

Tomorrow we are going do the 5.5hour trip up to Brisbane to see the orthopedic podiatrist for a review of the boys orthotics and Cys night splint. Col found this cool looking bed and breakfast to stay in, so it will be like a mini break for us 2 nights away.

Cy has finished his course of antibiotics yesterday but Owen is still going on the Uber ones - we see the ENT surgeon here in Armidale on Thursday for the post op review so I have my fingers crossed that both boys will be well, things are looking good right now and it is obvious that both are hearing so much better. Yahoo didgeridoo!

The shops

We went to the shops yesterday - I am always down there - Owen loves the supermarket -it where all his fans are - or at least he thinks so. He waves and throws kisses and cheers for nearly everyone and he has become quite a celebrity with the women that work there. Every morning as I get him dressed he will sign "shops" and "car" over and over or "Mel" his family daycarer - don't know whats wrong with my company and staying home !!! Anyway, so we are down at the supermarket yesterday and we have done our shopping and I am putting Owen back in his car seat when he frantically starts saying "ooo" oooo" and signing something I didn't recognise at the time and then he sayes and signs " Uh oh" and points to something outside of the car and there laying on the ground is one of his shoes ! He was telling me his shoe had come off !!!! I was so proud of him ! I hadn't noticed and would have driven off with out it if he hadn't told me !!!! This kid is growing up !

More Uber biotics

Cy complained of a sore ear yesterday afternoon and then proceeded to throw up everywhere. We took him to a doctor who said his ear drums are very red and he needs antibiotics. He threw up all over me and the bathroom after getting home from the doctors, because it is a public holiday here no chemist was open to get the antibiotic so we had to wait until this morning. We dosed him up with Painstop (a painkiller with codeine) and put him to bed for the night, he slept through till morning.
When he got up he came in to our bedroom and asked me "what's in my ear?" and I said "you have tubes in your ears to let the air in so you can hear better" and he said "no I have juice".... WTH !!!!!!!!Gross, but he has fluid leaking out his left ear, its just kinda oozing out. As soon as the chemist opened this morning we were there for the prescription.

So Cy is now on an antibiotic its not as Uber as Owens but stronger than normal. Urgghhh, we also bought a new bottle of probiotic and an extra large tub of yogurt.

Postive news is that Owen seems to be on the improve and is noticably trying to talk more/clearer !!! (so exciting) and Cy hasn't thrown up since last night. Yahoo.