Saturday, October 22, 2011
I have neglected Isla's blog for so long.
My sweet little princess is almost 7. She's now lost 5 teeth, and looks completely grown up. This photo was taken yesterday afternoon.
Isla's been doing so well at school. At the end of last term, she won the PBIS Award for her class, which she is super proud of. Last week she had to give a 2 minute speech on kangaroos and their environment and received another award for her public speaking. She was picked to give her speech in front of the school at assembly, and she could barely contain her excitement.
Isla's had 2 lots of Botox since I last updated, and will be having another round in December. Her left leg has responded brilliantly to the botox and casting regiment that her physio has her doing, but her right leg has really tightened up, to the point that we're now worrying about contractures, as she can't seem to get her foot to 0 degrees.
We have a review with the Botox Doctor on the 4th to see what's going on with it all. At the moment, Isla is wearing AFO's all day every day and padded AFO's during the night. She still has canvas wrap-arounds that she is also meant to wear of a night time, but I'm finding this really tough to enforce, given she needs to have some comfort when she's sleeping (already being in AFO's and all) but we're getting to the stage of needing to straighten her legs out to prevent hip injuries.
Isla's right leg is turning in at such an angle that her foot is almost completely sideways when she walks, hence the worry about hip injuries, but surprisingly, her 6 monthly hip xrays show amazingly good range considering her CP. So that's good news.
Tuesday will be a very exciting day in this house, because Isla will finally get her wheelchair! She is beyond excited about it. I've promised her a trip to the zoo asap because it's always been too far for her to walk in the past, so she's really looking forward to it, as we all are, it'll be great to be able to get out and do different things now that distance wont be an issue.
My sweet girl is obsessed with reading, singing and all things Littlest Pet Shop. It feels like only a few months ago she was sitting in her bumbo bouncing to the sounds of Hi 5, now she's a school girl with grown up teeth, reading books and using the computer properly. In fact, she now asks me questions, and if I don't know the answer she says, "don't worry Mum, I'll google it". Far out.
Wednesday, November 3, 2010
Monday, July 19, 2010
It's been forever since I posted.
Tuesday, May 25, 2010
Isla had an appointment with Dr L today to review her kidney ultrasound and abdo xrays from 2 weeks ago. Background to these tests, Isla had incontinence following Botox last November - cause unknown, but suspected Botox spreading from injection site. Dr L hadn't had any reported cases of this and was quite perplexed and concerned, hence the tests.
Thursday, April 29, 2010
...why Isla has wobbly legs".
Monday, April 26, 2010
Back in December 2009 I got fed up with the lack of services etc available to Isla.
Dear Ms Roxon,My name is Allison Farr, and I am the mother of Isla, who is 5 and has Cerebral Palsy. I am writing to your office for your help, in finding the answers to my questions which no one else seems to be able to provide. I am a single mother and a full time student. I have a one year old child as well as Isla.I applied for funding for Isla from the Dept of Health and Ageing, who denied her, saying that we had to access The Spastic Centre, who would help us out.The Spastic Centre classify Isla as mild (in comparison to the severe cases they deal with) therefore we don't qualify for their services, except for group therapy, which is of little help to Isla as she is more "advanced" than the others in her group and is often left out of the activities. It is not therapy as such, more like playgroup/social interaction.We cannot access the local Paediatric Allied Health Unit of our local hospital for Physiotherapy and Occupational Therapy for Isla because we're involved with The Spastic Centre (and we're on waiting lists, we're not actually accessing ANY services from them whatsoever). We're not involved with any form of Early Intervention. I wanted to apply for the DADHC Family Assistance Fund, to pay for Isla to do Riding for the Disabled, but again we don't qualify for it because we're not involved with Early Intervention. We were able to access the PAHU of our local hospital before we moved into a different region, but no one organised our files to be transferred to the new area, no one gave us names of who to see, where to go. Now we've moved back to our old area and are on the wait list to get back in to these services.We have to pay to see a private physiotherapist, a private orthotist, private specialists (including rehabilitation specialists, neurologists, opthamologists, paediatricians). In addition to these people we see, Isla also has Botox Injections into her legs to help her walk, which is followed by weeks of serial casting, at $250 per week, and Ankle-Foot Orthotics which cost $1400 per year. It costs me $5000 in therapies etc per year. We don't have access to aides for her for things like toileting because her Occupational Therapist said the wait list is too long, and only the more severe cases get approved.We don't qualify for the Carer's Payment, because Isla is not severe enough, yet she cannot walk further than 50 metres without falling over and being unable to walk further, also when she falls she's unable to help herself back up. Isla is unable to take herself to the toilet. She is unable to dress or undress herself. She has great difficulty brushing her hair and teeth. She is unable to sit on the carpet cross-legged. She is unable to walk in large groups of people as she has very little balance. She has difficulty climbing into her low toddler bed. She cannot cover herself over with a blanket. She cannot climb into the car. She struggles going up a single stair. She cannot stand in the shower, and cannot get herself into the bath. She has difficulty climbing onto our dining chairs to sit with us for dinner. She has toileting accidents almost daily when she has the Botox treatments. She is five years old.All these things and we're told she's not disabled enough.She tests well in cognitive skills, which is where we start to have problems - in that, she's not mentally disabled so we have all our attempts at funding denied. I have to lift her for all the above mentioned activities. I cannot take the children shopping, because Isla can't walk far enough, and is too big for a pram, and too big for a trolley. I haven't been offered any form of respite. No form of counselling. Isla's disability is impacting on almost every part of my life, not just hers.I have to pay for all her therapies and treatments out of my own pocket. My (now separated) husband and I had to hold a private fundraiser to be even able to afford Isla's therapies. I contacted Centrelink about their Carer Adjustment Payment but was told we didn't qualify. We live in a rental property and cannot make adjustments to the house to accommodate Isla, such things as doors on the bath-tub, hand rails in the toilet, shower and to the front door. We cannot put in a ramp to the front door to help Isla get inside.She will need an Aide at Primary School in 2010 but they aren't sure whether they'll be able to get enough funding for one, so it may well cost me to send her to the local public school by paying privately for an aide.We're stuck. No one seems to want to help us. We've slipped through the cracks and no one seems to care.Please help. Please point me in the direction of SOMEONE that can help me.Allison Farr
Wednesday, April 21, 2010
So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group.