Monday, June 22, 2015

How time flies....

I honestly can't believe how busy this year has been. I thought with L at kindy I would have more time to do things and time to myself. Well considering how long it's been since I've written here I can safely say it hasn't happened.

So far this year has been a whirlwind of getting A sorted at school, sorting out L's aide time at kindy and J readjusting to Year 3. It has meant battle with school, searching for funding and getting to know the system again. I have learnt on this journey that nothing comes easily and you often have to fight for what you are entitled to.

So Term 2 is nearly over and it has been full on. Miss A's FACHSIA funding runs out when she turns 7 in July so we have been busy using it up. At the moment A struggles with core strength, handwriting, cutting, fine motor and grip, balance, multi step instructions, processing and sensory needs. Just to name a few.... So with the funding we started weekly physio sessions to work on strength and balance. The cerebral palsy really affects her in this area and she struggles with simple things like sitting in a chair without slumping, floating in a pool and balancing on one leg. So far the progress has been great! When we started she couldn't stand on one leg unsupported and now she lasts a few seconds. She can also hold a float position in the pool for at least 2 seconds. Her OT has been doing weekly handwriting sessions and reinforcing letter formation. When writing a few words she is fine but fatigue soon kicks in and she gets sloppy and presses too hard.

                                                         Physio Sessions for Miss A

As for Miss L this term we have been focusing on food! Well the lack of more like. I have been seeing a behavioural psych and her Speechie to create a program to cut down on her Pediasure. We are trying to increase her food intake at the same time. I have been keeping a diary of everything she eats or drinks and it's a pretty dismal sight. Most days her entire food intake would fit on a side plate. Some days she doesn't eat until 2 or 3pm. The desire just isn't there. Miss L has been sick twice over the last 2 months so that certainly hasn't helped. We monitor her weight as well and have her Paediatrician on board just in case. Her dietitian has approved the plan and we have a small margin of allowed weight loss before we have to think of something else.  
An example of her food diary is:

The one thing I wouldn't mind getting rid of is the night time milk. Over the last 6 months she has started getting up anytime between midnight and 5am screaming for milk. She doesn't wake and cry or call your name she literally screams out Ocky her word for milk. Quite a startling way to wake up. I also keep track of what days she sleeps and has school to see how it influences her eating.

Mr J has been pushing the limits this term and for the first time ever get in trouble at school. He is struggling in the class this year as the kids have been separated into several different years and most of his friends aren't with him. Plus the amazing teacher he had last year is very different to this one. She was positive, uplifting, caring and nurturing whereas his teacher this year keeps saying they are Year 3 they need to "grow up". I didn't know there was a magical phase between 8 and 9 where all kids matured and buckled down?! Ugh. It's been interesting so far to see how he is going and a struggle at home when you just feel like it would be nice not to have to worry about all 3 kids at once. Oh the joys of parenting!

The good news is school holidays are less than 2 weeks away. I am hoping we get some time out then and just get to chill. No more rushing in the morning, doing homework, worrying about school pick ups and just get to spend time together. 

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