give a girl the right shoes and she can conquer the world.

Almost a year...

2011-10-22T10:14:00.002+11:00

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.

Update!

2010-11-03T20:02:00.002+11:00

Was it really July when I last posted on here?

Poor Isla.

I had an appointment a few weeks back with Isla's school regarding funding for aide hours next year. Good news is, she's guaranteed hours until 2013 when she'll be reviewed again and because of her age will more than likely get more hours. Bad news is, still at 3 hours per week, but it's better than nothing, and with only a few weeks of school left, 3 hours has done her quite well {but of course, like most things, it could be better}.

Isla's tone is starting to increase now, it's been 5 months since Botox, but her measurements remain quite good. It's hard to see her walking up on her toes again though, it's quite noticeable at the moment.

Isla took part in a muscle stimulation trial/study a few months back where we used a mini tens machine on her right calf muscle for 30 minutes per day for a week. Isla tolerated it really well and we look forward to hopefully being included in the group when it's up and running.

Last week Isla had her first {and hopefully last} ambulance trip. I picked her up from school and she was fine. We went to get her an icy pole from the shop and on the way she was talking about a spider being on her at school. Once we got to the shop she was boiling hot to touch and covered in goosebumps. When we got home the vomiting began and her torso was covered in a red blotchy rash. I freaked out and called 000, but by the time they arrived her temp had started going down, but was still so high at 39.1 so off she went to emergency for a while.

Turned out to be nothing to do with a spider, but an infected throat. Little poppet is aok now.

A few weeks back, I bought Isla her proper 'big girl' bed, upgrading from her toddler bed. We picked an awesome set of bunks with desks built in. So far just Isla is in there, I'm not ready to introduce Harper into the mix just yet!

At the end of September Isla lost her first tooth, and now has another wiggly one! So exciting! I thought she'd freak out by it, but she was so excited, she actually yanked it out!

I think that's everything I've neglected to update the blog-world with...

The above photo is from Isla's school's Halloween Disco last week. She had such a great time and loved dressing up so much!

2010-07-19T14:33:00.002+10:00

It's been forever since I posted.

Isla had botox on the 7th of June and was so so brave. The anaesthetist was running late and Isla was the 5th kid on the list so didn't go under until 1pm, she was SO hungry, poor little mite. Hamstrings and calves injected {one day I'll actually learn the proper names of the muscles}. She was pretty nauseas when she woke up so had something put in the cannula to make her feel better, then proceeded to down a cup of hot chips in no time at all.

Isla continues to amaze me whenever she has to go to an appointment like this. She never complains, in fact she was actually excited to go and kept talking about her sleeping mask. I think that if she were to know what actually went on with the injections etc once she was asleep it might be a different story.

We were meant to go to Dr L for a post-botox review on the 6th of July, but Ian's Mother passed away suddenly that morning, so I haven't been able to organise another appointment for her as yet.

She had her serial casting on the 9th and had her measurements taken by her physio, Michael at the hospital - we've finally managed to get into the hospital for physio & OT which will save me almost $5,000 a year. Michael said her response to the botox was "really good" and that she'd only need 1-2 weeks of plasters, not the 3-4 we initially anticipated due to her high tone. So, after one week we went back and had them removed {she chose purple this time} and Michael was so thrilled with her response that she didn't need any more plasters!!!

The most exciting part of this is that Isla doesn't need to be in plasters when she goes back to school tomorrow. Awesome.

We have a long term wheelchair trial at the hospital on the 26th, which I am pretty apprehensive about. I have no idea how it all works, and the idea of her being in a wheelchair frightens me, but she's excited about it. The wheelchair rep is coming out to meet us at the hospital...I think...

What else?

Isla's school report came the last week of school and I am so proud of her. She was above average in everything ♥ She loves school so much, has made so many friends, I am so so proud of her. I sent the book "Nicholas Nigel Norris" to school with her when she went into her Orthotics, and the teachers have sent it all around the school, which has been really positive. Actually, it's still there, I'll have to chase it up!

Isla's still scared to be at school in the playground. There are almost 500 kids in such a small {concrete} area, she's terrified of being knocked over. Ian and I plan on speaking to the Principal about this asap. Poor little mite.

Dr L wrote a long letter for Isla in the hopes that she'll qualify for more aide funding at school. At the moment she's only receiving 3 hrs per week, but most of that goes to sport {!!} I'd rather her have standby support at recess and lunchtime. We'll see what happens there.

Poo talk, funding denial and wheelchairs. What a day.

2010-05-25T21:59:00.006+10:00

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.

So, we're about to head out the door when the phone rings. It's a lady from the Dept of ACDH. Sh was lovely, but did mention that Isla doesn't qualify for anything from them because she doesn't have an intellectual impairment....but hang on, what about her physical one?

Her advice? Try MDS {our local disability service providers}. I'm sure they'll be of great help {note sarcasm here}. I have emailed them, I can't wait to hear them say she's not eligible.

Why is this so difficult? Why aren't physical disabilities being taken into account for these types of Departments? Why are these kids {and adults for that matter} forgotten? Where's the equality?

We head off to see Dr L. His other appointments are running late so it's a perfect opportunity to discuss things with him. First and foremost, he goes over Isla's xray and ultrasounds. No problem with her kidneys and the way they drain {phew!} she does, though, have a compacted bowel which he believes is putting pressure on her bladder and causing the incontinence. Can see a tiny smile of relief on Dr L's face at this news! We need to see or Paed, Dr F for treatment.

Dr L mentions he's "heard through the grapevine" that Isla doesn't have access to any services. I have a total panic thinking he's been reading my blog, {I am going back in my mind thinking, hoping I have ben nice!} and he says that the wonderful Orthotist, Felicity, that made Isla's new "helpers" had spoken to him about it. Bless her {did I mention she has new helpers? They're "rainbow" and she loves them}.

Felicity is wonderful, really wonderful. She asked all the questions I'd wanted someone to ask me, she listened, and she acted on it. This never happens! She's amazing. I can't wait to see her in 2 weeks at Botox and thank her.

I digress.

Dr L asks about how she gets around school. I say fine I guess, I haven't been told otherwise, she generally has an aide with her when she's navigating the playground, but misses out on some of the sport/exercise etc. He asks how she goes on excursions - they haven't had any yet. He suggests the school provide her with a wheelchair. He then says I should look at getting one for her too for longer walking trips {longer than 500ish metres}.

I gasp.

I wasn't ready for it.

I suggest perhaps an "old lady walking frame", he nods. I suggest elbow crutches, he nods.

It hit me like a tonne of bricks. I knew it would happen at some point but I didn't think it'd be now.

We go on to talk about the Medicare safety net, and how I need to register for it, and should be able to claim Isla's physio expenses. He agrees with me about the crappy way TSC is set out. AND it turns out that while we lived with Dad we could have and should have been accessing TSC campus about 15 minutes from home, not the place about 45 minutes away, but that's a whole other rant in itself. He agrees that it'll be hard to qualify for anything given Isla has no Intellectual Impairment.

What to do now?????

Two weeks til Botox. Wish us luck.

PS Here's Isla in her new 'Helpers' ready for school - complete with flashing shoes to help her get that all important heel-strike ;)

"The kids want to know...

2010-04-29T12:20:00.003+10:00

...why Isla has wobbly legs".

This is how my walk to school went this morning.

I think it's the first time that someone has ever asked me that question. Most of the time I think people wait for me to offer up an explanation.

"She has Cerebral Palsy" I replied.

The mother who asked is Isla's best school-friend's mother, and she is so lovely. I think she was worried about asking me, because she said, "I'm sorry, I mean if it's okay for me to ask?".

I don't know how much information to give. Do I leave it at CP or do I go on about how she got it, where she's affected, what the future holds for her? How much information do people actually want?

I was lucky in that she asked more questions like, "Was she born with it?" and "Do you know why?". All questions I could answer.

I offered up some info on her Orthotics {which we pick up in 2 weeks, yay!} so that they know what they are when Isla starts wearing them again.

I could feel my voice going funny when I was talking about it, you know that wavering feeling just before you burst into tears? But the thing is, I wasn't sad, I was happy. Really happy that she asked me, that she didn't just fob off the kids questions and actually asked and was interested in Isla and her CP.

Isla has started going to Before + After School Care on Fridays while I'm at TAFE, and her little friend goes with her. The mother said she loves Isla so much and always hears about her from her daughter. She said that when she picked her daughter up from ASC she asked the teachers how Isla settled in on her first day there ♥ only to be told that the children there were all falling over each other to be the person to help Isla out ♥

This has been the best thing about starting school for Isla, the way that the other kids want to help her and don't want her to miss out on doing anything. At school, her teacher said the kids race each other to get to Isla's bag to help get her fruit out for munch 'n' sip. They all want to take a turn at sitting on the cushions with her. Kids can be awesome ♥

Squeaky wheel gets the oil.

2010-04-26T19:40:00.003+10:00

Back in December 2009 I got fed up with the lack of services etc available to Isla.

I think it would have been around the time I was trying to sort out an aide for her schooling, and trying to be able to pay for the bulk of it myself.

I sent an email to Nicola Roxon, Minister for Health. It's down below if you want to read it {it's the same babble that I've been going on with here though}.

I mention that we can't access DADHC because we have to go through TSC who give us nothing. They've {Dept of Ageing, Disability and Home Care} told me repeatedly that they cannot help us.

So imagine my surprise when I receive an email from a DADHC Intake Officer who says she's been trying to contact me. Yes, an INTAKE officer.

The email I sent to Ms Roxon was forwarded to Jenny Macklin, who I didn't hear from until a week or two ago, and typically, I can't find the letter now *roll eyes*.

It came with a heap of Govt crap, like we're investing $$$ into blah blah blah, which is great, but I don't care. They gave me numbers for free Govt Carers Counselling {which I'm happy to pass on if any others out there want it} a service I never knew existed. They gave me contact details for Respite.

She {or her representative writing to me} forwarded my email and their response to another Minister who this "issue" falls under his portfolio for his "direct consideration and response". They told me to reapply for the Carer's Payment because the criteria have changed since July 2009.

I did initially wonder whether the reply was in response to the National Disability Insurance Scheme that they're working on, or maybe the Aust Govt's Productivity Commission 's inquiry into Disability Care and Support.

Who knows?

Either way, it'll be interesting to see what happens from here.

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

Hmmm.

2010-04-21T22:28:00.003+10:00

So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group.

Last year we had an "assessment" with TSC who thought Isla would like their group - which consisted of similarly able children who get together of an afternoon at 3.45pm and do dancing, stretching, games etc.

Sounds great, except that this group is about a 50 minute drive from here, and Isla doesn't finish school until 3pm. I can't imagine how long it would take to get home in peak hour...and I have TAFE too.

I tell them it's not practical for us to get there and we can't make it in time, and I have schooling commitments. She said, "Okay, well if you decide you want to access our service again, you'll need to contact Pathways and wait for the intake".

Seriously.

This is what really shits me about TSC. We're not a priority for them, and I get it, I understand, Isla is mild by their classifications. She is certainly more able than the majority of their patients, but she still has needs...more needs than just a play group.

We're not offered OT or Physio through them. We were offered a speech assessment which Isla "passed" with flying colours. She's never had speech issues {apart from a stuttering problem which went away on it's own accord}. What she needs is Physio and OT, but I can't see a private physio and access TSC. So what choice do I have? Sit around and wait for months for Isla to come up on their lists for review and assessment and not have her seen in the meantime?

I know their resources are stretched. I know they prioritise their services for those who need them most, but we've been dealing with them, and I use the term loosely, since Isla was one. And in that time she's had playgroup a handful of times, where she was either ignored or used as a model, "come on Bob, look at how Isla's knee walking, you do it too!". The therapists didn't spend any time with her...

Annoyed.

And I feel guilty for being annoyed with them. I guess they're doing the best they can, but I hate this feeling that my little girl is falling through the cracks in the system, because by their classifications she's mild, yet compared to a "normal" child, she has increased needs. What am I meant to do?

I have a 5 year old, who can't get in or out of a car on her own. Who can't get herself into a bath. Can't stand up in a shower, can't dress herself. Cant brush her hair. Struggles to brush her teeth. Can't cover herself with a blanket. Struggles to walk up the small step into our house. Can't sit with her legs crossed. Can't get up on to a dining chair. Can't walk more than 100ish metres without falling over. Can't stand still without losing balance and falling over. Who can't control her bladder and bowel {still not sure if this is botox or what's going on}. Who still has problems with dribble because she's tightening up around the jaw....Her last assessment showed her gross motor skills to be under a 2 year old level...

I just wish that she was a priority.

smile.

2010-04-14T13:47:00.001+10:00

Isla

2010-03-27T16:01:00.003+11:00

It's been so long since I've updated Isla's blog.

She's doing so well at school. I have a parent-teacher interview on Tuesday to get the low down on how her days go at school, but all reports thus far have been really positive. Thursday we have our first Easter Hat parade, she is super excited, although keeps on shooting down my ideas on hat designs *sigh*. She's able to sit on the floor with her legs crossed after I found her some pretty awesome cushions a few weeks back. She was terribly upset that people didn't want to play with her at school because she got to sit on a chair during group time. Now, the other kids are allowed to take it in turns of sitting on a cushion with her, and it's made a heap of difference.

She's had a few OT appointments lately, all going really well. Mel the OT seems to be quite happy with her progress, and hopefully she'll be picked up through the local hospital's OT intake sometime very soon. We've been given some finger stretching exercises for her to complete, as she's having a bit of trouble holding pencils, but otherwise, it's all hunky dory.

Physio's been going really well. Still not in Orthotics, and couldn't get an appointment until May to be casted {add another 6+ weeks to that to have the AFO's made}. We saw Dr L this week who wants her in AFO's right away, so we were going to have to have them made privately, which would have cost $1500 {ouch!}, but the Orthotics Gods were smiling on me, because 2 days later the Children's Hospital called with an appointment in 2 weeks time due to cancellations. Hooray!

Spoke to Dr L about the future surgeries Isla's looking at, he described them as multi-level surgeries {what that means I don't quite know and I'm too scared to ask Dr Google!} she'll require them to her feet, her knees and her hips. I asked when this will take place, he said when she's 11 :(

We need to organise a kidney ultrasound for her to make sure her kidneys are draining properly. This needs to be done before the next round of Botox in June, just to find out what caused the bladder & bowel issues that Isla's had since November's Botox treatment. So, we're going to see our Paediatrician, Dr F to get it all sorted and to get our yearly checkup.

I'm sure I have more to update on, but my mind is a bit of a blur right now!

School Update

2010-02-08T12:32:00.002+11:00

Isla was so excited to have 2 "days off" school. Bless her little socks.

Even better though, she was excited to go back to school this morning. I thought it was going to be hard given the weekend, but she was busting to get back.

I can't believe that of the 4 days I've taken Isla to school and picked her up, it's been raining. Seriously. It's summer!!! {I know, I know, I complain about the heat constantly, now I'm complaining about the rain!}.

She's been put into her proper class as of today, called the Wallaroo's. How cute. I was secretly hoping she'd be a sea lion or a panda, but wallaroo it is. She's not in the same class as her little friend Emily, but has a friend from pre-school, Maddison, in the class with her, so she'll be happy {I hope!}.

I'm still adjusting to her not being here of a day time. It's such a different feeling to her being at pre-school, but she hadn't been since December, so I had grown accustomed to having her by my side all day, every day. I miss her!

Poor Harper was upset when Isla went into class. She's missing her too - although not so much right now, as she's playing with Isla's beloved Dora Schoolhouse. Isla would be mortified if she knew!

I'm trying desperately to learn how to braid, Isla has requested braids and I have no idea how to do them, so I've spent hours trawling the internet for tutorials! The things we do!

I go back to Tafe tonight. I don't particularly want to go. I told Ian last night that I'd post-pone it for 6 months while Isla settles in to school. I feel like I'm going to miss out on seeing her all day. I only get an hour or so in the morning before school, then the same after school. Tafe starts at 5pm and by the time I get home at 9 she'll be asleep. Sigh. Shall try it for a week and see how we go.

A whole new world.

2010-02-05T22:12:00.004+11:00

Isla started school on Wednesday.

She'd been up since 6am...made me put her hair in long plaits last night so it's ready for the big day.

It was pouring! Absolutely bucketing down with rain. We had grand plans of walking to school and cutting through the park, but it was far too wet!

She was super excited, mainly at the prospect of TWO lunches {recess and lunch!} and playing in the playground was top of her list of priorities, but with the heavens opening the way they did, they were relegated to the benches under cover. To think how damn hot it has been in Sydney these past few weeks, and since Isla started school it's done nothing but rain, rain, rain.

Uniforms were hemmed and ironed with love, I slipped $2 in her pocket for a treat from the canteen. Her lunch box was full of goodies, we'd been practicing opening and eating from it for a few days before. Everything is labelled with her name.

She's was so excited.

When it came time for her to leave me and Harper and join her class she didn't cry at all.

We were sitting in the hall and she was saying "I'm so excited!". I told her about the money in her pocket and she almost wet her pants with glee! She's in group "Green" this week for the testing and we find out who her teacher is and what class she goes into on Monday morning.

They asked all the children to line up to walk to class and she ran off without saying goodbye and forgot her school bag, she was in so much of a hurry. I walked her to the end of the line and then she was gone!

A school girl.

I met up with her outside the classroom where the Kindy teacher said we could give them a final kiss and cuddle. She was standing in line waiting to go into class, she had already forgotten about us and was ready for school. She gave me a big kiss and cuddle then walked in proudly to her classroom.

My MIL and I watched through the window until the Principal told us to leave {the nerve!} but Isla didn't look back once. When we they were sitting on the floor reading a story, Isla was sitting on a chair, just smiling.

I'm so proud of her. I miss her so much during the day. The house seems so empty. Harper searches for her constantly.

I think this is my favourite photo so far. You can see her in the doorway. She's just spotted us. Look at that beautiful expression, mouth wide open with excitement. Bless.

Thursday was a bit of a crapper of a day though. I called the Principal to see whether Isla qualified for funding {which we were told she would} and I was told she'd receive 3 hours a week. That's it. 3 crummy hours a week.

When I picked her up that afternoon she said nobody wanted to play with her at recess and lunch. She said that she ate her lunch by herself. She said that the other kids didn't want to play with her because she got to sit on a chair during group time.

My poor little girl.

So, I spent the remainder of Thursday in tears. So did Ian.

We took her to school this morning and she was a bit clingy. She was a bit upset, but I couldn't really blame her. I told her to go sit on the floor with the other kids instead of the chair. She smiled a smile like a cheshire cat, and ran off to sit with the kids. I watched her try desperately to sit cross-legged, but couldn't.quite.get.there.

Ian called the Principal and told her we didn't care if she W sits on the carpet, we're more interested in her being included. She agreed that was a good idea. He told her we're unhappy with the funding. She agreed that they'd try to push for more and will sort out the paperwork for us. We asked if her new little friend would be in her class as of Monday, she's going to see what she can do.

When we picked her up today, she was brought out by her aide {who's name I've already forgotten, but I want to say it's Gail, so that's what I'm going to call her}. We had a quick chat with her. She said Isla played on her own for a while at lunch while Gail observed, then Gail went over and talked to her and children followed. There were several kids playing with her by the end of lunch. Same thing for recess {recess comes after lunch at this school!}. We talked about inclusion, we talked about extra funding. She listened, she offered advice, she understands. She said she's already fallen in love with Isla and that she's a wonderful little girl.

I couldn't agree more

Botox follow up.

2010-01-21T23:42:00.002+11:00

My little possum went for her Botox follow up appointment with Dr L today.

I was very glad that this appointment was coming up because Isla has started to have issues with her bladder and bowel, which have been becoming a bit of a problem.

He seems to think it *could* be the result of the botox, given that she was injected higher than last time {this time in the hamstrings rather than the calves} so it's entirely possible that it could be the effect of the botox on her bladder/bowel.

So, we have to go to a GP and organise a urine sample for Isla, to rule out a UTI {which, Dr L said doesn't account for the loss of sensation with the bowel}. Apparently children commonly don't have any of the associated discomfort of a UTI that an adult would experience, and sometimes the only symptom can be incontinence. So, should a urine test rule that out, then we need to wait and see whether it continues once the botox wears off {in a few weeks time}.

If it doesn't, she'll need an MRI on her spine, as apparently there's some research that shows that some children with Cerebral Palsy develop cysts on the spinal column which can lead to lack of sensation in the bowel/bladder.

I hope it's just the botox.

Dr L has NEVER had a patient with this problem following botox, despite it being listed as a side effect from the injections on the information sheet given out before deciding to undertake treatment with the Botox. He said we should feel privileged {TIC!}.

He's keen to avoid the GRAFO's {I cant remember what the GR stands for} as he thinks they'll be too cumbersome for Isla. So, in the meantime we need to have wedges fitted to the orthotics and see how they go, before having a new set made up by the wonderful Rob. I was hoping to organise AFO's before she starts school, but it doesn't look like that will happen until at least March.

Five.

2010-01-08T22:23:00.004+11:00

Happy 5th Birthday Isla.

I cannot believe you're five. I just can't. It only seems like yesterday I bought you home from the hospital, yet here you are, already hitting me up for a $1 raise in your pocket money because "I'm FIVE now Mum".

I am so proud of the little girl you've grown into, so polite and thoughtful. So smart and beautiful. I love you so.

5 years ago...

Now...

Sunday is your much longed for McDonalds party. You have been counting down for this for weeks.

The world is yours for the taking, my little duck. I know you're destined for great things. You amaze me every single day.

We took Isla to the Botanic Gardens and met up with Bron from Big Brother & Little Sister, and Di from N0thing but Everything. Two beautiful ladies, with their gorgeous children. Such a great way for Isla to celebrate the big 5.

She was spoilt rotten, with more spoiling to come on Sunday.

Five years goes by in the blink of an eye.

Oh how they grow...

2010-01-03T22:35:00.003+11:00

This is Isla modelling her new school uniform.

She starts school in a month...today.

She'll be 5 in 3 sleeps.

Where has the time gone. My sweet little girl is all.grown.up.

2009-12-29T11:50:00.001+11:00

Two BIG things

2009-12-18T13:20:00.005+11:00

Two big things have happened this week.

1. Miss Isla has graduated Kindy (!!). Oh so cute!

AND

2. The best news of all, physio has told us NOT to wear her AFO's (until February at least!!!!!!!) and Isla does NOT have to go into plaster following last months Botox!!!!!!

How awesome!

Isla's calves aren't doing too bad, they're now more concerned about her hamstrings, so it means no AFO's during the day - just normal shoes!! - and right AFO and night splints of a night time!

I can't explain just how much of a big deal this is.

The AFO's that Isla is currently wearing are new to us. We've always had them made by Rob, the Orthotist, but last time we didn't. Never again! Even though these one's we didn't have to pay for, they've caused Isla nothing but trouble since we've had them (6ish months) so we'll pay the $1500 for new "Rob" ones from now on!

So, now I get to go and buy my little girl shoes, shoes that will fit her feet, not her orthotics! I can't remember the last time I did that! Probably before she was diagnosed with CP I suspect.

Just think of all the pretty shoes we can buy!

Oh Happy Day!

Kindy Xmas Party

2009-12-12T22:05:00.003+11:00

I can't believe little Isla's time at Kindy is almost over. She has her graduation on Tuesday night.

Last Tuesday was the Xmas party, she had a ball. She looks so grown up, only a few weeks until she's five. FIVE! OMG!

I could kiss the inventor of General Anaesthetic!

2009-11-30T20:58:00.005+11:00

Botox day today.

I was filled with fear and trepidation of what lay ahead, if last time was anything to go by.

To my utter surprise, everything today was easy and straight-forward.

I'd been telling Isla that we'd have to go back to Dr L's hospital again, but promised her "no yucky medicine, and no pricks" (as she called it from last time). I explained that she's have her own little mask on, and she'd have a little sleep, then when she woke up she could have jelly and then come home. It literally went just like that.

She was excited to be there from the get-go. I was concerned that going back to the ward would bring back all those memories of the last time we were there, but apparently not. She didn't remember it at all.

We took Katie, the French talking doll, Bella the ballerina and her polka dot sheet that she's slept under this past week while she was sick. Oh, yes, she was sick as a dog this week and Ian took her to the hospital on Wednesday night after a day and a half of fever which then turned into spots. According to the hospital it was just tonsillitis, and the fever caused the spots. Although now Harper has broken out in them and everyone seems to think that it may be German Measles (we're off to the Dr's tomorrow).

I digress...

The Dr I spoke to on Thursday checked her over and said she was fine to go ahead with the Botox today, so that was a relief. Isla was all excited about the bed that winds up and having a colouring in table right on top of it! So we settled in with the sheet and the dolls, ready for colouring, only to discover that I forgot to pack the colouring books, so Ian went on a mad search through the hospital(s) looking for one and ended up having to walk all the way up to the main street of Randwick to get one!

Orthotics were fixed, and I still hate the bloody things. They were meant to give us a referral for a new pair for a few months time, but we didn't get it on the way out. Actually, we didn't get anything, I guess I'll have to chase that up.

We met the Anaesthetist, we saw Dr L, we had the usual obs done.

The Play Therapist came and asked Isla what sort of toys she liked, she said "horses and Princesses". The Therapist came back with some bright orange playdough (which Isla was allowed to bring home) and a gorgeous Disney Princesses Doll house. She was stoked!

The Play Therapist also had a bag of scented lip glosses, and Isla was allowed to choose whatever scent she liked to put on her mask before the Botox took place. She picked Coca Cola.

Not long after, they came and said they were ready. Ian said he'd go with her to the Procedure Room, he knows how much I hate hospitals and all things medical. I kissed her goodbye and told her I loved her. She waved and was smiling all the way. She was excited!

I cried while she was gone. I couldn't believe how excited she was, and I was anxious that she'd come back like last time and it'd be a nightmare.

About 30 minutes later she was back. I was outside getting some air, Ian called me. I was worried about how she would be when she woke up. I worried she'd be hard to rouse. I worried that she'd be sick. I ran up the stairs and into the ward, and there she was in bed, wide awake, laughing, joking, happy.

Ian and I couldn't believe it.

She tried some jelly, but didn't like it. She devoured a ham sandwich and half a bottle of lemonade. It was almost time to go home!

Then The Clown Doctors came in. If ever you needed to donate to a charity, it should be these guys. Isla loved them. I loved them. Everyone loved them. They sang Isla a song, they played with her, gave her bubbles, and took a photo with her. They were awesome. This guy in particular was hilarious (cant't quite explain why I look like I have been punched in the face!)

Isla didn't want to leave!

So, we have a review on the 21st of January.

We have some new physio stretches to do, must get back into the night splints. They're a bit concerned about her knees and hamstrings more than her calves now.

So proud of my little Princess. I found a DIY Fairy Doll kit when I went down to the giftshop in search of chocolate, which I of course bought for her for being so brave, and then, of course, we had to make it tonight. Lucky she's cute!

Update, update, update.

2009-11-17T19:49:00.002+11:00

So very slack.

I haven't been in here for ages, I've been so preoccupied with so much stuff.

Isla is doing really well. Just this last week she seems to have grown up so much - it's insane.

2 weeks ago we had "Big School" Orientation and she loved it. It was such a huge step for the both of us. It was a really emotional experience, more so for me than for Isla.

As we were walking in to the hall, she started crying and told me she was scared and wanted to go home. She clung to me like never before as we sat in the hall waiting for her and the other children to go off to the Kindergarten classes to play while we learnt the school rules.

I sat there wondering whether I was doing the right thing for her. Maybe I should home school her? Maybe she should wait another year? All the other kids were SO much bigger than her and more confident.

Then one of her pre-school classmates came up to her and told her she was coming to the school too. Isla was over the moon. Everything changed. She gladly walked off into a sea of kindy kids, confidence beaming from her. She was so excited.

We sat and listened to policies for what seemed to be an eternity before we could her chatter from the canteen behind us.

There they all were, our little almost "big schoolers", enjoying recess at big school.

She spotted me and came running up to me, telling me how much she loves big school and can't wait to go back. She told me they did colouring, and read a story and she made a new friend.

It turned out to be wonderful.

We put a calendar up on the fridge for Isla to mark off each morning when she wakes p, counting down to the next orientation at big school, which is this week. She is thrilled.

I received a call from the Botox Dr, Dr L today, Isla's botox was scheduled for December 21st, but she's been brought forward to the 30th of this month. Dr L seemed to think it would all be a bit to much leading up to Xmas, and I am very grateful to him for that. It may also mean that Isla will not be in plaster for the first few weeks of big school.

What a relief.

What else has been happening?

We're applying for funding for Isla to have an aide at school with her, mainly for recess and lunch times and for sports days. She'll need help navigating around the playground, and stand-by assistance going to the bathroom. Hopefully we'll be successful.

Isla refuses to have photo's taken, so unfortunately I have none to upload of her!

2009-09-06T10:43:00.004+10:00

Trying to redeem myself here! I haven't posted pics of Isla for the longest time, so here are a few of the little fairy - who is today insisting on being called Sarah.

Lots of news.

2009-08-13T14:40:00.003+10:00

We've been busy little bees around these parts lately.

Here's the latest on Miss Isla.

We saw Dr L on Tuesday, the Botox Dr. He's still happy with her progress although she is beginning to tighten up again - particularly in the hamstrings.

He's stressed that she really needs to break her W sitting habit, because if she continues, she will no doubt require some sort of hip surgery in the future :(

We're booked in for more Botox on the 21st of December, yes, 4 days before Christmas. BUT, the good news is that she'll be having it under GA, because she remembers everything about last time.

He mentioned some new study that they're trying to get funding for, some sort of electrical current therapy (I could have that wrong, but the word electrical was definitely in there somewhere!) and he thinks Isla would be a suitable candidate for the trail. I have absolutely no idea about what it all involves, but I'll wait to see what info Dr L gives me before I completely dismiss it.

What else.

We had a Speech assessment at the Spastic Centre the past two Mondays (over two appointments because Isla was being "stubborn"). I get the report on Tuesday, but the Speechie said that she's very happy with her skills and doesn't seem to think she has any problems in that area.

We saw the Paediatrician too. He's given us a referral to the Sleep Clinic at the local hospital. Still waiting for them to call us back with an appointment time. Isla is going to hate it, but she's such a poor sleeper, plus she snores and grinds her teeth, it'll be good to get to the bottom of it all.

Dr F (the Paed) did check her tonsils and adnoids but thinks that they're okay, a little on the largish side, but still very much okay. He'll wait for the results of the Sleep Clinic before we make any more decisions.

The lady from the DET called this week to help organise Isla's transition to school, but because we've now moved, we have to wait for another lady to contact us. The house we've just moved too is a very short walk to the local public school, so we hope that Isla will be able to go there. Dr F told me that it is a very good school and he thinks it will be suitable for Isla, he's writing them a letter all about her.

We pick up the new orthotics tomorrow. Finally. It's been completely impossible to find a time to get in to the Prince Of Wales Hospital to get them fitted. Then we get to go shoe shopping! Isla is excited. I hope they keep her heels down.

Not much else happening though.

We're back on the books with the Spastic Centre, so now we're just waiting for them to call us and get into some therapy over there.

I have some photo's but not on this computer. Will upload some tonight!

Hello Attitude.

2009-07-28T11:18:00.003+10:00

Ugh.

Isla has had such an attitude lately. I'm trying to ignore it, but wow, it's full-on. She's uber emotional at the moment, the slightest thing sets her off into a stream of tears. And she's cranky, defiant, and just generally naughty.

We've never really had any behavioural problems (well, I shouldn't say problems, this is really an 'issue' is suppose) so it's all new to us.

I know there has been a bit of change for her to get used to lately, me going back to work, then leaving work, botox, we've moved, I'm now going to school, she's being minded by my Mum and Ian more. I guess it all contributes to the 'issues', but ugh, I just want my lovely little girl back!!!

On her progress though, we've been having weekly physio and she's improved SO much. Huzzah! She's happy to do her exercises these days, which is a welcomed change.

We're accessing therapies through the Spastic Centre again, they're going to contact us about group therapy, dancing and something else, I can't remember.

They seem to have it all going on, so I'm happy with the decision to go back there. I explained that in the past Isla was the mildest child there and missed out on interaction with the therapists, they understood and said they'd work on something for her.

We have a speech assessment next Monday. Should be interesting.

Child Developmental Assessment Clinic Report.

2009-07-04T10:01:00.003+10:00

Remember we saw Dr B a few weeks back? Here's the report (feel free to fast forward to the results).

"Isla is referred by Dr F, Paediatrician, because she has Cerebral Palsy and will probably go to school in 2010 and this is a developmental assessment towards that. She attended an appointment with her mother Allison on Friday morning the 12th of June.

CURRENT CONCERNS:
There was some concern as to how her needs will be met in school. Isla is considered to be thoughtful and a caring child who is affectionate towards the family and friends. She has good communication skills and a large vocabulary.

HEALTH INFORMATION:
Isla was born at Liverpool Hospital five weeks early weighing 2.585kg. She had a head circumference of 34cm. She was born by emergency caesarean section. There was grade IV placenta praevia and there was severeal antepartum haemorrhages during the gestation. Her Apgar scores were good at birth 9 at 1 minute and 9 at 5 minutes. She was discharged home at 5 days.

There were no neonatal seizures. There was some jaundice.

She has had occasional viral illnesses. She has had suspected seizures though they are considered to be day-dreaming episodes. She has had Botox injections at the Sydney Children's Hospital. Her current diagnosis is Spastic Diplegia/Quadriplegia.

She has had her vision and hearing tested and all is considered to be well though she has not had a recent hearing test.

DEVELOPMENTAL HISTORY:
Isla pulled herself to stand at 12 months and walked at 26 months. She walked upstairs at about the ages of three and a half. She can pedal a tricycle at the age of three and a half. She started babbling at six months, said her first word at 9 months and started joining words at 18 months. She started speaking sentences at around the age of two. She tries to do buttons but has difficulty with that, She tries to help with dressing but has difficulty. She is is able to feed herself with minimal difficulty. She is learning to use a knife. Isla knows numbers, letters, colours and shapes.

PLAY AND BEHAVIOUR:
Isla is generally very well behaved. She plays happily on her own and with others. She attends Kindy on Wednesdays and Thursday s from 10-4 and enjoys the time there. She has occasional toileting accidents and she is generally considered to be physically awkward.

Past assessment using the Bailey's Scale at 20 months by the CAT team at Campbelltown Hospital found that she had some motor difficulties.

AGENCIES INVOLVED:
Speech Pathologist, Physiotherapist, Occupational Therapist, Ophthalmologist x2, Neurologist x2, The Spastic Centre.

OBSERVATIONS DURING GRIFFITHS ASSESSMENT:
Isla at 4yrs and 5 months (53 months) was presented with tasks from a test called the Griffiths Mental Developmental Scales Extended Revised (GMDS-ER) which assesses the mental development of young children (from Birth to 8 years, May 2004). Standardised tests are constructed for the purpose of determining a child's level of performance relative to other children of similar age. The Griffiths Scales examine a child's mastery of a number of different skills and thereby provide a behavioural yardstick of a child's level of maturity. The following abilities and levels of performance were obtained in 5-6 sub scales:

A. Locomotor Skills - This scale assesses gross motor ability to balance, and to coordinate and control movements. This includes assessing walking up and down stairs, kicking a ball, riding a bike, jumping and skipping.

B. Personal-Social Skills - This scale assesses the proficiency in the activities of daily living, independence and ability to interact with other children. This includes activities such as dressing, competency using cutlery and knowledge of information such as name, date of birth and address.

C. Hearing-Speech Skills - This scale assesses the expressive and receptive language skills. Items tested include naming objects and colours, repeating sentences, describing a picture and answering questions about comprehension, similarities and differences.

D. Eye-Hand Coordination Skills - This scale assesses fine motor movements, manual dexterity and visual perception skills. This includes threading beads, cutting with scissors, copying shapes and writing letters and numbers.

E. Performance Skills - This scale assesses the manipulation skills including the speed of working and precision. This includes building bridges and stairs, completion of puzzles and pattern making.

F. Practical Reasoning Skills - This scale assesses the ability to solve practical problems, understanding of basic mathematical concepts and questions about moral and sequential issues. This includes counting and comparison of size, length and height.

RESULTS:
Locomtor Skills Age Equivalent Less than 24months
Personal-Social Skills Age Equivalent 40 months
Hearing and Speech Skills Age Equivalent 56 months
Eye and Hand Coordination Skills Age Equivalent 52 months
Performance Skills Age Equivalent 37 months
Practical Reasoning Skills Age Equivalent 50 months

SUMMARY:
Isla is a delightful child to assess. She has very good language and communication skills. She scores in the low average range principally because she has fine motor and gross motor difficulties (she has difficulties with motor planning). Isla is doing very well and will fit nicely to a mainstream school where her physical needs can be met.

Because of this she requires a transition to school referral so that the family can investigate with the DET an educational setting where her physical needs can be met. She might need things such as gradual access ramps for easy access and she might need tilted writing surfaces. Isla is noted to be able to walk about 100 metres before she becomes tired and so these things need to be taken into consideration. She falls over fairly frequently and though this should be no reason for her not to attend school it is something that needs be taken into account.

Botox report.

2009-06-30T08:51:00.002+10:00

This is the letter that arrived after our review with Dr L, one month after Botox.

"Isla had the botox injections on 21 May 2009. Repeat xrays were done at the time and showed RMP of 11% and LMP of 4.5%.

Although it took a little while for Isla to wake up, she went home that day.

Her parents report that it was easier to get her into orthotics for the first week, but she was a bit wobbly on her feet. Now, she is not falling as much. She can heel-toe walk.

Isla's parents report that Isla has been reviewed by Dr B, and in his assessment, Isla is suitable for mainstream school. He is happy with her results.

When I saw her today, she was still tight, particularly in the right gastrocnemius and soleus, more than the left. She will need casting. Gastocnemuis length was just on plantargrade on the right and +15 on the left, with initial at -10 and plantigrade respectively. Soleus length was +15 on the right and +25 on the left, with initial catch at plantigrade and +10 repectively. Isla was walking straighter with her right leg, with positive progression angles bilaterally.

She will be reviewed in 2 months time".

Again, no idea what it all means, but will endeavour to find out today at Michaels.

Plasters...again...again...

2009-06-23T08:06:00.005+10:00

We had physio for the first time since Botox yesterday.

Michael is VERY pleased with the results from the Botox (which are supposed to peak 3-4 weeks after injections). Her range of movement on the right went from -10 degrees to +2 degrees. She is also walking flatter than ever, and has less swing with her hips.

Happy Days.

As expected, Isla went into plaster on her right leg again - to help maximise the stretch in the muscles while the Botox is taking effect. She stunned us all by picking green plaster, we all expected her to go with pink or purple.

She's such a trooper, I can't remember how many times she's been in casts now, and she never complains.

Pics to come soon.

New Orthotics.

2009-06-18T10:56:00.006+10:00

We went and saw Dr L in his rooms on Tuesday, for review following the botox. He's really pleased with her progress although he still notes some increased tone in her right hamstrings. He said we will have to have 3 weeks of serial casts (starting next week) to maximise the effect of the botox, something that Michael (physio) was hoping we'd be able to avoid.

We see Dr L again in August, we'll see what happens from there.

He asked how she was following the procedure, whether she had any problems waking up, which she did. We told him how she wasn't discharged until late then slept until 2.30am. He asked how she was the following day, and she was a delight, in fact, she was probably the happiest and calmest she's ever bee, - which leads Dr L to believe that perhaps she's not getting enough sleep.

I mentioned this in that massive questionairre that I did last week for Isla's Mulitdisc screening with Dr B. Dr L has advised me to contact Dr F, the paediatrician, and get a referral to see some other Dr who runs the sleep clinic.

Great.

After the appointment with Dr L, we head down the road to the Prince Of Wales Hospital to collect Isla's new orthotics. We get there, and Isla LOVES the purple butterfly design I picked for her *phew*. The Orthotist still needed to cut them down etc so we go back tomorrow to collect them, but we did bring home the above-pictured wrap around braces.

She has to wear them all night long. First night was okay, she lasted all night and we took them off at 5am so she could have a few hours sleep in comfort - but she had other ideas and decided that it was a great time to be up for the day.

Last night wasn't so good she just couldn't get comfortable. Poor little thing. Ian brought her into our bed and I ended up taking them off her again. She can't walk in them, and they have to be taken off if she needs to go to the bathroom. They're made from canvas with 3 metal rods inside.

The Assessment...

2009-06-15T08:18:00.004+10:00

Isla did really really well.

Dr B said that there's absolutely no reason why Isla shouldn't go to kindy next year. Hooray!

The assessment had to go as long as Isla could keep answering questions correctly. Dr B said that in our area, he'd never had a child as young as Isla get so far through the test. There were pieces from the test kit that he had never used before, because no one had reached that far :)

So, we'll get a copy of the report when it's ready, so will the DET and we'll set about finding a school for Isla.

Very exciting.

Questions, questions, questions.

2009-06-12T07:26:00.003+10:00

Today Isla has her appointment with Dr B, the one I had so much trouble organising earlier in the year.

So, they sent a letter the other week asking me to confirm the appointment by a specific date. With all the goings on with Botox and me going back to work, you guessed it, I forgot to confirm. I called them up and told them I received the letter after date (ha ha!) and they said no problem - excellent.

Inside the envelope with the letter of appointmnet was a questionnaire. 10 pages worth that I have to fill out and take with me to the appointment. Quite generalised questions, but it makes me wonder the actual point of me filling out the damn thing when they're going to be assessing her anyway?

I wonder if they read my answers first whether it will sway their thinking in anyway? Will it have a bearing on her results?

The questions go like this: (and I'm jotting down some of my answers for future reference too!)
REASON FOR REFERRAL:
Who suggested your child be assessed by this service? Our Paed, Dr F.
What are your main concerns, if any? Isla has Cerebral Palsy. We'd like to have her assessed to see whether she's physically ready for school in 2010. Concerns: Fine & Gross motor skills.
Are your child's difficulties causing problems within the family? Please explain. No
What do you think are your child's strong points and good qualities? Isla is very thoughtful and caring. She is very affectionate towards family and friends. Isla has good communication skills and a large vocabulary.
What are you expecting from the clinic? Some indication on where Isla's development is at, what things we should watch out for in the future, and help with finding assistance for Isla.

FAMILY HISTORY:
Was your child born in Australia? Yes.
What languages are spoken at home? English.
Mother's details.
Father's details.
Other children in the family. Sister, Harper.
Primary carer. Mother.
Who lives in the family home?
Any other learning problems in the family?
Medical illnesses on either side of the family? Diabetes on both sides of the family.

MEDICAL HISTORY:
Were there any medical concerns during the pregnancy? Please describe.Grade IV Placenta Praevia. 12 haemorrhages, 1 clot betweeen 25-35wks gestation. Bedrest from 26 weeks.
Did the child's mother take any medications or other drugs during the pregnancy? Please describe. Intramuscular steroids at 28 weeks.
In which hospital was your child born? Liverpool.
Was the child born full term? How many weeks early? No, 35+2wks.
How was your child born, eg normal delivery, caesarean etc? Emergency caesarean.
Where there any complicaitons with your labour? N/A
Birth weight? 2585grams
Birth length? 49cms
head circumference? 34cms
Was your child unwell following the birth? Jaundice.
Do you know the baby's APGAR scores? 1min? 9 5 mins? 9
How many days old was your child when discharged from hosptial? 6 days.
Immunisations up to date? Yes.
Please list any medical information regarding your child: Past and present health, include details of any illnesses, congenital or medical conditions, accidents or operations, seiaures, hospitalisations, head injury, headache, febrile convulsions, constipation, diarrhoea, etc. Cerebral Palsy. Suspected blank seizures. Tonsilitis. Occasional 'flu (including fever & vomiting).
Medications? please list. N/A
Does your child have any allergies? Drugs? Food? N/A
Have hearing and vision been assessed? Hearing at birth - passed. Vision with Dr H in 2006.
Have you ever had any concerns about your child's hearing? No.
If you were able to put an age to your child's current skills, what would it be?

DEVELOPMENTAL HISTORY:
Rolled over - what age? Not sure.
Sat alone without support - what age? 10 months.
Crawled - what age? 11 months.
Pulled to stand - what age? 12 months.
Walked alone - what age? 2years 2 months.
Run - what age? 2.5 years
Jump - what age? 3.5 years.
Walked up stairs - what age? 3.5 years.
Tricycle - what age? 3 yrs 4 months.
Babble - what age? 6 months.
Said first words - what age? 9 months.
Put two words together - what age? 18 months.
Speak in sentences - what age? 2 years
Used a spoon him/herself - what age? 12 months.
Dress him/herself without help - what age? Still unable 4.5 years.
Toilet trained - bladder day/bladder night/bowel - what age? 3 years 7 months.
Does your child use both sides of their body equally? No.
What was your child's first word? Isla - 9 months.
Does your child point to indicate their needs? Yes.
Does your child have a preference for the: Right Hand, left hand or no preference? Isla has better control with her right hand and usually picks up pens/scissors etc with the right, but will often swap hands mid-activity.
Please describe how your child helps you with dressing him/herself? Isla tries to do up and undo buttons but doesn't have enough fine motor control. She also tries to put on pants and jackets but does not have the flexibility to bend/stretch to do it unaided.
Please describe how your child helps you assist with feeding him/herself? Isla is able to feed herself all sorts of food with minimal difficulty. She is learning to use a knife properly.
Does your child know any: numbers? Yes, Isla can count to 20 and to 10 in Spanish. letters? Isla knows the alphabet by heart and can identify letters by sight. She can also identify some words. shapes? Isla knows a number of different shapes. colours? Isla knows lots of different colours.
Are there any skills which your child used to have that he/she no longer has or any that have deteriorated? If yes, please explain? No.

FEEDING HISTORY:
Does your child use a feeding tube or a special feeding method? No.
Does your child have a special type of diet or a food allergy? If yes, list reason or diet type. No.
Does your child have problems sucking, swallowing or chewing? No.
Is your child a fussy eater? Yes.
Does your child have any problems with constipation, diarrhoea or vomiting? No.
Does your child eat 3 times a day? Yes.
Is your child eating chopped soft foods? Yes, and hard food also.
Is your child drinking from a cup? Yes.
Is your child eating meat, chicken, fish or eggs most days? Yes.
Is your child eating fruit and vegetables most days? Yes.

BEHAVIOUR:
Please describe your child's behaviour at home? Isla is generally very well behaved. She happily plays on her own with her toys, uses the computer, and colours in. She is a little defiant at times, particularly at bed time.
Please describe your child's behaviour at preschool/school or away from home? Isla varies from being clingy with the teaching staff to very well behaved and follows directions without problems.
Describe your child's current sleeping pattern:
Does your child sleep too little or too much? No.
Does your child snore? Yes.
Does your child have disruptive sleep behaviour? Yes.
Does your child make normal use of eye contact? Yes.
Does your child play with toys imaginatively (eg pushes toy cars around, feeds dolls, tea parties etc)? Yes, Isla has a very vivid imagination and is often found in her room hosting tea parties and role playing with her toys.
Does your child enjoy lining up toys? Yes - Isla especially likes to line up fridge magnets and pegs.
How well does your child play with other children? Isla plays well with her peers - although she is very selective who she'll play with.
Does your child seek comfort if they get hurt? Yes.
Does your child show affection towards other people? Yes, although she is generally very shy and reserved upon meeting new people.
Does your child bring you objects to show you? Yes.
Does your child use his/her index figer to point or ask for something? Yes, and sometimes her thumb.
How does your child react to loud noises? Isla is scared of loud things such as lawn mowers , hand-dryers etc. Upon seeing such items, Isla's first reaction is to cover her ears and hide from the item until the noise is removed.
Does your child have any obsessions or strict routines? please describe. No.
Does your child have excessive tantrums? If so, in what circumstances? No.
Is your child overly aggressive or destructive? please describe. No.
Is your child overactive? please describe. No.
Does your child have poor concerntration? please describe. No.
Childcare/Preschool/School Attendance?
Has the long daycare, childcare, kindergarten or school indicatied any concerns to you about your child? Only about Isla's occasional toileting accidentgs and general clumsiness.
Has your child ever repeated a year at school? No.
Has your child had any previous assessments related to their development, learning or behavious? if yes, please provide the details. Isla had a Bayley scale assessment at 20 months by the MCAT team. Peabody Fine Motor Assessment by OT in Feb 09.
What other agencies or professionals have been involved with your child?
Have there been any major events, changes or traumas that have occurred wihtin your family, recently, or in the past? Arrival of baby sister in November 2008. Mum has gone back to work as of May 09 after Maternity Leave. Isla seems to be distraught with me leabing her at daycare and dancing lessons.
Is there anything else you feel may be valuable for us to know for the assessment and treatment of your child. Isla can walk approximately 100 metres before tiring (at most). She generally falls over every 15-20 metres. She cannot go to the toilet without assistance (cannot get on to the seat).
Considering the issues/concerns you have identified, what do you believe is the cause? Obviously Isla CP is the cause of her main problems, but I do wonder about learned helplessness - with Isla insisting that she can't walk very far (at the shops for example) or can't dress herself.
Are there any further problems that you believe stem from these issues/concerns? As above.
What do you fear moset about these issues/concerns? That Isla will struggle with day-to-day tasks at school (particularly navigating school yard/playground) and toileting.

2009-06-09T11:56:00.002+10:00

The world of a four year old. A day in pictures.

2009-06-04T14:31:00.007+10:00

Isla has taken ownership of my sisters old point and shoot camera.

It's absolutely fascinating to look at the photo's she takes.

Enjoy.

Appointments galore.

2009-05-28T22:33:00.005+10:00

I received a call from the Spastic Centre on Friday saying that they're picking up Isla for OT and physiotherapy! YAY!

I love pur physio, but I also want her to have a second opinion, from people who deal with CP daily.

She said they didn't have any appointments until July, yet she sent me an appointment card with a booking for Monday. Seems some wires have been crossed, I must remember to call and confirm exactly what's going on.

Spoke to her physio today, he called to change the time of one of her appointments for serial casting after the botox. We rescheduled a heap of appointments so Dr L can see the effects of the botox before we do casting.

He asked how I was finding her since the Botox, and I can definitely notice a difference in how easy it is to get her AFO's on now. He said that's a very good sign. We went away to the beach these past few days and Isla was making COMPLETE foot prints in the sand, so she's getting heel strikes, which Michael said was very good too.

I spoke to him about the new brace. He is pleased she's getting it. He said she'll wear it at night and during the day if she's going to do loads of walking. He said the aim of the brace is to stop her leg turning in, and he thinks it will be very beneficial for her. Time will tell!

She's booked in for a Multidisc screening that I had difficulties booking (see here!) in 2 weeks time. I have a massive questionnaire to complete in the mean time.

Loads of stuff happening these next few weeks, I hope I can keep on top of it all.

Oh, and I should add, remember my last post I talked about how relieved I was that Isla couldn't recall anything about the Botox process? Well, seems it just took a while to come back to her. Little Isla remembers EVERYTHING, the needle, the sedation drops, the cling wrap, the jelly. EVERYTHING. :(

Relief.

2009-05-22T18:51:00.004+10:00

I was dreading today. Poor little Isla was so out of it yesterday, I just couldn't handle it.

Isla slept without moving until 2am. Once she called out to me, but that's it. Didn't roll over, didn't move her head, just slept. I kept checking on her, gently waking her to ask if she needed anything, but she kept saying no.

I didn't get to sleep until after 11.30 - I just couldn't stop running through the days events over and over again in my mind.

2.30am, Isla woke up and said to Ian, "I don't want to sleep anymore". And with that, she's been up since (it's almost 7pm now) and has shown no signs of being tired. It's like she's caught up on a lifetime of sleep deprivation and is finally AWAKE.

I've never seen her look so bright, never seen her in such a good mood. She's been an angel all day. She's spent hours colouring in, and has made me a card because she loves me.

I asked her what she remembered about being at the hospital yesterday, she said "Umm, I did colouring in and stickers, then I had a little sleep". That's all. My prayers had been answered. She doesn't remember having the sedation medicine, she doesn't remember her bloody nose, she doesn't remember having her x-ray, or the morphine injection. She remembers sleeping. She remembers eating some chips. That's all.

Relief.

No pain in her legs today, she's walked really well, but has had random falls more so today than in the past. She called my Mum and said, "Nana, I was really brave at the hospital, so can I have a present?".

Mum bought her a Dora Memory game. She's played it about a billion times already.

Relief.

Botox.

2009-05-21T19:30:00.005+10:00

Awful day.

We didn't bother setting our alarm this morning, "Don't worry, Harp is my alarm" I say to Ian. She usually wakes at 5am - which is when we wanted to get up to get our butts in gear to get to the Hospital by 8am - but last night she decided to wake at 2am and then went back to sleep until 6.30.

So we manage to get up, get dressed and out the door by 6.45am - with my Mum (and Harp's arch nemesis) arriving to look after Miss Harper-Potamus. Off we go.

Arrived at the hospital on time. All starts well. Dr L comes in with an Orthotist, Physiotherapist and nurses. Room fills up quickly. 2 other children also in the ward getting Botox today. They've both had it before.

Physio & Dr L want to assess how Isla is walking. She refuses. Will only move if she can race the 36wk pregnant physio across the ward. Thankfully, physio agrees.

Dr L asks how the dynamic taping is going, I say it makes a difference on the days I can get her to wear it.

Orthotist has a look at her AFO's, says they're too small (which indeed they are) and agrees to flare them out at the calf to stop the bruising they're causing. Dr L mentions that after the botox, Isla will be casted for new AFO's. BOOYAH.

Dr L and someone, another doctor perhaps, I'm not too sure who she was, but she seemed fairly official, put the elma cream on Isla's calves and hamstrings then wrapped her legs in cling-wrap.

Isla went off to be weighed and measured (14.2kgs and 101.2cms) before returning to her bed to do lots of colouring in and stickers that I'd bought for her, in between watching play school on the tv.

At 9.40am the nurses came with a syringe full of sedative medicine (According to the form they sent home with her it was called Chloral Hydrate). She spat a mouthful out, then had to have 4 people pin her down to get the rest into her mouth. Cue bawling from both Isla and I. Lovely nursing staff were patting me on the back in the midst of Isla's screaming, which caused the medicine to gurgle in her throat, sounding like she was choking. I was a complete mess.

After she'd swallowed as much as they could force her to, a nurse gave me a wet cloth to wipe her tongue with to get rid of the taste. Poor Isla.

10.20am the nurses came back with a needle. One of them told me that I could wait outside if I needed to when they gave it to her. They said that it will hurt her, but there wasn't anything they could do for the pain. So, Isla's thigh was jabbed with Droperidol and Morphine - and she again, screamed the place down. I was laying across her to help hold her still while they injected her, and to also distract her while they were doing it, I failed miserabley on both counts.

The next 20ish minutes were hell. I have never been more upset and terrified in all my life. The medicines were starting to take effect. Isla was becoming disorientated, and the nurse said she was probably starting to feel dizzy as well. She was crawling around the bed, unable to speak properly, couldn't move around properly, her arms and legs seemed to be too heavy for her to move. She cried and screamed, kept saying "I don't want to be here" in a slurred voice. I couldn't stop crying.

I wanted to bundle her up in my arms and run out of the hospital. I tried to cuddle her, she screamed and hit my hands away. I tried stroking her hair, she yelled and moved away, all the time saying, "I don't want to be here".

It took forever for her to get to sleep. She kept saying her nose was running, and was sticking a finger up there. Suddenly, blood started pouring out of her nose, and on to her sheets. I called the nurse, who called the Dr. Ian held her head forward and pinched her nose to stop the bleeding. She was still screaming and crying. I could do nothing but watch on, crying, she didn't want me anywhere near her.

Finally, she started to quiet down. She was almost asleep when a very rude nurse came to put the heart rate/oxygen saturation monitor on her foot and startled her. She started screaming again. Nurse snaps at her "Go to sleep!! Go to sleep!!" - Well lady, she was almost there before you came along.

After another 5 or so minutes she falls asleep. I can finally touch her again, I sit next to her, stroking her beautiful hair and holding her hand. The nurses come in and say she'll go for the procedure in 5 minutes. They're lovely. I am still in tears. They tell me that I can go with her to the procedure room so I know where she'll be, but they don't let parents in, although if she were to wake up, they'd come and get one of us to be with her. I crossed everything and hoped that she'd keep her little eyes shut.

We walked her around to the room. A big room, she looked so little in her bed, sound asleep, completely unaware of what was going to happen to her. I am still crying. Dr L see's me in the hallway and asks what's wrong. I didn't know how to explain it all. I sobbed, "it's not fair". He didn't seem to understand. I told him that I just wanted to make her better forever and it can't be done. He told me he'd look after her, and that we need to do this to give her the best chance. I know he's right.

They say it will take 20 minutes. We decide to go outside to get some fresh air and call Mum to see how Harp is doing. Good news on that end, Harp and Mum have bonded and they're now best friends. She's been asleep for an hour, unwrapped in her bed (opposed to wrapped, in her swing and only lasting 20 minutes for me). Explain to Mum what Isla's been going through. Mum bursts into tears.

We go back inside, I'm waiting outside the bathroom for Ian, the mother of the little boy in the bed next to Isla comes up and tells me that she's back in her room, still asleep. Ian seems to be taking forever. As soon as he emerges, we run up the stairs, back to her side.

She looks so peaceful. Someone had been stroking her head during the procedure, her fringe is sitting funny. She'd be pissed off if she knew. I sit with her again, holding her hand. Nurses come in and say that they're able to rouse her, but she's still very sleepy. She's had Nitrous Oxide while the injections took place.

Dr L comes by to tell us that she did very well. A lady from the pain team tells us that they weren't game to move her during the procedure. She's still in the same position as when she went in.

We book an appointment with Dr L for June 16 while Isla is having her legs casted by two orthotists. I get to pick the design for her new orthotics. I choose mauve butterflies. She has no idea any of this is happening. Orthotist measures her up for a wrap-around brace. I know nothing about it. No-one has mentioned anything to me about her needing another aide. I ask about it, assuming it's a second-skin type thing. He says it'll be made of metal and canvas. I panic. What the hell is this thing. "Is it to be worn at night?" I ask this guy, he says she can wear it at night. It will go up her thigh, it's to keep her knee in place - just like the AFO's are for the ankle and foot, this is for higher. I think it's meant to be worn simultaneously with the AFO's. Great. We pick them up in 4-6 weeks.

She sleeps and sleeps. The 2 other boys come back from their botox, and she's still sleeping. They're up and eating, she's still sleeping. We keep trying to wake her, she keeps groaning at us to go away. The nurses need her to drink something, she refuses. The other boys are getting dressed to go home, she's still sleeping. Nurses try to get her to drink apple juice, she refuses and puts her hand across her mouth to stop us trying to get the straw in there.

She says again, that she doesn't want to be there. We tell her if she has something to eat and drink she can go home. She groggily gets out of bed and sits on Ian's lap and eats half a cup of jelly. Again refuses the apple juice and asks for water. Drinks 1/4 of a cup. Still groggy, she says her tummy hurts and goes back into bed.

Every blink, her eyelids get heavier and heavier. There's no expression on her face. She is so groggy, so sleepy. The other boys go home. Isla drifts between awake and asleep for the next hour and a bit.

Around 2.30pm she manages to eat some chips and with the promise of a trip to the fairy garden, starts to wake, sits up and plays with some stickers. We're all worried she's either going to fall backwards and hit her head on the bedrail, or fall forwards and hit her face on the table. She rocks around woosily the whole time.

She starts to brighten up, we get her out of bed to walk around, we're finally able to leave around 3.15pm, but before we're allowed to go home, we have to go to Radiology in the adult part of the hospital for a hip x-ray, then wait for the films and take them to physiotherapy.

Isla is a trooper. She's so sleepy, her walking is wobbly and unco-ordinated. She's smiling though. We play in the playroom, we pretend to make cakes in the toy oven (an ice-cream cake). She's an angel for the x-ray, is practically asleep on the table. Films are ready within a minute then we're on our way home. Finally.

My head is pounding, Ian is cranky because we're going to be in peak-hour traffic. He wants me to drive because he has to drive in it all day every day at work. I am exhausted. I put Isla in her car seat and tell her it's okay to sleep. She is asleep within 10 seconds. This was around 3.40pm.

She slept all the way home, when we came inside I put her into my bed, so I can be close to her tonight if she needs me. It's 8.40pm now and she's still asleep. I've been waking her every hour or so to ask if she's okay, does she need anything. She says she just wants to sleep - and with all those drugs in her system, is it any wonder.

So I'm still awake. Ian fell asleep as soon as we got home, I had to feed Harper and get her off to bed, then wash up all her bottles, and tidy up. I want Isla to drink something, I'll persist over night. I think I am over-tired now.

We go away on holidays on Sunday. I hope she's back to her beautiful self by then.

Questions today. Botox tomorrow.

2009-05-20T12:59:00.004+10:00

"Mummy, where are Harper's helpers?". This is what Isla asked me this morning as we were getting her dressed for Kindy. Harp just got her first pair of shoes.

I didn't know what to say. She looked at me and asked why Harp doesn't need them but she does. Broke my heart.

I had to try to explain that Isla is Special and that's why she wears them, but Harper doesn't. She smiled and went on her way, but now I'm thinking, more than ever, that I am really going to have to explain everything to her, sooner, rather than later, as I mentioned in this post.

Botox is tomorrow. I still feel relatively calm at this stage. I imagine I will fall apart tomorrow. I can't quite explain why I feel this way, maybe because part of me always thought Isla was mild enough to get away without any botox, as it's something that's been spoken about for 3 years now, but it's never been a reality, until now.

Ian is coming with us tomorrow, not sure if that's a good thing or a bad thing. Mum is looking after Harper - wish her luck. Harp is oh so naughty for Nana, while it is slightly amusing, we're all going to be stressing off our heads tomorrow, I hope she's a good little lady.

Just for Bron

2009-05-11T14:24:00.007+10:00

Seeing as though you refuse to join Facebook, I shall put these pics here for your viewing pleasure :)

Check out Harper's super cool cockatoo hair!

And this one again in B&W because I like it :)

Total confusion.

2009-05-05T07:28:00.004+10:00

Far Out.

After a frustrating time on the phone yesterday with a woman from the Hospital Isla will be going to for Botox, I finally managed to confirm her admission for the 7th.

Then, yeseterday afternoon, I receive a letter from the hospital asking me to confirm Isla's admission for the 21st. Huh? I called them and explained she's booked in for the 7th, it was confirmed earlier in the morning. Lady I'm speaking to on the phone says, "Disregard the letter about the 21st, she is booked in and ready to go for the 7th".

Excellent.

Cue phone call exactly 2 minutes after I hang up from the Hospital, from Dr L's receptionist, "Hi Mrs F, I'm just calling to let you know Isla's Botox has been rescheduled for the 21st of May". Argh!

She went on to explain that there is no anaesthetist there on the 7th, and there are only 3 children being done on that day, so they're postponing it for 2 weeks.

Now I have to call Michael the Physio and re-schedule the months worth of appointments for casting we made for her following the botox, and see if she can get in to see him again before the 21st. Thing is, I think Michael was considering another week of casting before she had botox on the 2nd of June (the original date we were given) - we'll see what he says when I call him today.

Starting to think all these changes are for a reason??????

Give a girl the right shoes...

2009-05-03T14:39:00.004+10:00

And she can conquer the world.

I saw this somewhere a few years back when Isla was first diagnosed with CP and was wearing her Orthotics/Helpers and it really struck a chord with me, so I'm using it as the title of Isla's blog, well, for now at least.

Have been thinking a lot about my little Isla in the lead up to Botox this week, and all the struggles she'll go through in her life. All seems unfair. I just know she's going to be teased when she goes to school, how do I teach her how to deal/cope with it?

Whenever we bump into children at the park or at the shops, as soon as they see Isla's Orthotics, the first thing they ask is, "Why are you wearing those things on your legs?". Isla simply replies with "They're just to help me kick better", and smiles and walks off.

So I'm now wondering, I've explained to her in the past that her orthotics help her walk better, should I be teaching her that she has Cerebral Palsy? Should I be explaining what it all means or is it too much for a 4.5 year old to take in?

I'm torn over it all. I want her to be able to say proudly that she has CP. I want her to know exactly why she is the way she is, I don't want to shield her from anything. I know once she goes to Kindergarten, she'll be pointed at and asked questions by all the kids, not just the kindy kids, she should be able to tell them the right thing, shouldn't she?

All too hard. Will work on it all, bit by bit, day by day.

Tiffany & Co.

2009-04-28T08:20:00.001+10:00

She has good taste, what can I say. Isla had her first train ride ever (at 4 1/3 yrs of age!) into the City to get Aunty Kate a pair of earrings. She thought she'd "Top Model" it up in the entrance to Tiffany & Co. Now she knows where to take Daddy shopping for Mummy's Mother's Day present.

2 weeks.

2009-04-23T11:03:00.004+10:00

Enter panic attack.

Today while in my favourite ever store, Sparty's, I received a phone call from Dr L's receptionist.

She told me that Dr L wants Isla's botox brought forward from the 4th of June to the 7th of May - which is in 2 weeks time.

I said "Of course, we'll be there" and hung up. I didn't think to ask any more questions.

2 weeks.

I couldn't concentrate on anything from that point on. I browsed the aisles aimlessly while trying to ring Hubby to get him to cancel the day off he'd put in for June and ask him to bring it forward to the 7th of May.

Hubby said there's no way he can get the 7th off as they've just authorised his RDO for the 6th of May as well as approving his time off in June.

Great.

Rang Mum to let her know what was going on and to see if she could look after Harper for the day. She said no problems. Relief.

Leave Sparty's empty-handed. This NEVER happens. Mind still spinning, this is all too quick.

I know I've been banging on about Botox for years now, but it's never been this close. I was just starting to come to terms with June being so close, but now it's 2 weeks away.

Breathe in. Breathe out.

I can't explain why I'm so petrified at the moment. I've known she needs it for the longest time. I missed my cousins wedding because we were saving up for it (before she was 2 where it's not subsidised) but she didn't need it. She was meant to have it last May, but I decided against it after all that FDA stuff with the deaths in the US.

Trying not to cry now.

Hope I can hold it all together for Isla's sake at the hospital. She'll be terrified if I'm upset, even more so than I expect she already will be.

Will see if I can get a gas mask to get her used to it. To get me used to it.

We see Michael on Monday. So much to discuss.

They grow up so fast...

2009-04-20T10:57:00.005+10:00

Where has my little girl gone?

My sweet little Isla, I love you so.

Some measurements etc...

2009-04-09T12:34:00.004+10:00

Here's a snippet from the Botox assessment. This is what Dr L wrote in his notes about Isla - full of lots of technical stuff, all of which is completely lost on me, but some others may find it useful. I thought I should pop it on here, given that I will no doubt lose the actual piece of paper it's written on. I haven't received a letter like this before, so it's interesting to read all of this, even if I don't understand it ;)

Isla's OT reported that with her Peabody Developmental Motor Scales assessment of her fine motor skills, Isla scored well within normal range. Isla has not yet developed hand preference but prefers to use her right more than her left. There has been a significant decrease in mirroring of her hand movements and there is less tremor.

Michael has also been seeing her privately. He notices internal rotation, particularly of the right leg with the need to circumduct the right leg for clearance of the left. This improved after serial casting to her right leg for 2 weeks in early February 2009. Her mother also agrees that Isla was walking much straighter but the effect of this was not sustained.

Indeed today when Isla walked, she was leading with her right pelvis so the left pelvis was retracted. Her foot progression angles were + 20 degrees on the left and - 40 degrees on the right. Initial contact was with the right forefoot but she did achieve heel contact on the right in mid-stance. At times, she had left forefoot contact initally as well. She had circumduction of the right lef to assist with clearance. Isla was slightly crouched by up to 10 degrees at the knees during mid-stance.

Isla was demonstrating increased tone in the right gracilis. Passive hip abduction in flexion was approximately 45 degrees on the right and 50 degrees on the left, and in extension approximately 25 degrees on the right and 30 degrees on the left. There was internal rotation bias at the hips in extension to approximately 80 degrees on the right and 60 degrees on the left, with external rotation being approximately 30 degrees on the right and 40 degrees on the left. there was no excessive tibial torsion. Foot-thigh angles were + 20 degrees. Gastrocnemius length bilaterally was approximately + 15 degrees with the initial catch at - 15 degrees on the right and - 10 degrees on the left. Soleus length was + 25 degrees with initial catch at +5 degrees on the right and + 10 degrees on the left. There was sustained clonus bilaterally. Popliteal angles were approximately 20 degrees with no catch.

Ready for School?

2009-04-02T13:38:00.003+11:00

Isla's kindy sent home a really interesting hand-out this week about school readiness. I've never really thought twice about not sending her to school once she reached the age where she could start. Now I'm reconsidering.

I'll share it with you..It's called "Am I Ready for School?"

Dear Mum and Dad,

I was born after March so please carefully consider my readiness for school
next year before enrolling me.
Remember that the legal starting age for school is 6 years of age.
Remember that I may be a whole year younger than children who will start
next year, and I may not have the social and academic skills necessary to
compete with these children.
These things may not show up until the later years of schooling and the
decision you make will affect my entire life and attitude to learning. Please
give this matter some serious thought.
To cope with school I need to be self-confident and have a positive self
image, not just at home where everything is familiar, but also in a large group
situation.
I need to be able to communicate freely and be verbally understood. I also
need to be able to follow complex directions.
I have to be able to concentrate on any activity for a set amount of time
to complete a task.
I have to be independent and able to care for myself - toileting, dressing,
and taking care of my belongings.
I also have to have social skills - being able to deal with frustration,
anger, being able to co-operate, respect others and their belongings and to
share.

Mum and Dad...being able to write my name, know my ABC and how to rote
count are not so important. If you are going to teach me these things, please
make sure:
Writing should be taught in the NSW foundation style. It has special letter
formation and the direction of the hand movements to form the letters is most
important. It is very confusing for a child to be taught one way at home and
another way at school. Please put a capital letter at the start of my name only
eg: Kylie not kylie.
Knowing my ABC does not really help me read. It is more important for you
to read to me, listen to me and talk with me.
In order to be ready for school, I need to have developed my:

Fine Motor Skills - hold pencil and brushes, thread items, manipulate
dough.
Eye-Hand Co-Ordination - Threading, cutting
Gross Motor - active play, climbing, throwing, catching, running
Concentration - ability to participate in group discussions and
activities.
Social Skills - able to cope with emotions, have ability to take
turns.

The 50 most important skills for children commencing school:

Use the toilet independently.
Follow verbal instructions
Dress & Undress
Identify/recognise own name in print
Look after own belongings
Share with peers
Express/indicate needs/wants
Hold pencil to make marks on paper
Keep still for short periods of time
Separate from parents at school
Take turns
Speak clearly
Identify own school bag and belongings
Open lunch box
Use tissues
Say their name
Know to/how to wash hands after toileting
Play with peers appropriately
Respond to their own name
Communicate with peers and teachers
Ask and answer simple questions
Use scissors
Tie shoelaces (at least practice this lots)
Write their own name in lower case letters
Listen to a story
Put things away after use
Know common colours, shapes and numbers
Listen to instructions
Eat independently
Participate in group activities
Know own name
Speak in complete sentences
Adequate concentration span
Listen to others speak in a group
Awareness of why they are at school/keenness to learn
Count to 10
Show an interest in books
Acceptable behaviour for school
Show respect to teachers/adults and manners
Ask for help
Hold book and turn pages correctly
Eye contact
Share an adults attention with other children
Recite nursery rhymes/simple songs
Know address and phone number
Be familiar with/use pencils. scissors, glue, paintbrushes
Attempt drawing
Fine motor skills
Walk up & down stairs safely
Accept correction/follow request appropriately

So there you have it. Interesting.

Botox Clinic Update

2009-03-26T16:01:00.003+11:00

We saw Dr L on Tuesday. I love this man. I feel very privileged that we are able to see him at all.

First appointment after lunch, 1pm - we arrived at 12.40pm left at 3.20pm. LONG day with the girls.

Isla has been sick with the 'flu for the last few days, and was particularly bad yesterday. Any smart mother probably would have not taken her out, but with the waiting list so long to see Dr that I just didn't want to cancel. I was pretty surprised when he said, "I haven't seen Isla for almost a year" Surely not?! I really should have waited around in October last year.

So, we're having botox. Still uncertain just how I feel about the whole thing, but that's secondary I guess. Isla doesn't know about it all just yet, and that's for a few reasons. 1. That I have absolutely no idea how to explain it to her. 2. I don't quite know what to expect and 3. It's not until June, I don't want her stressing about things until then.

June 4th we're booked in. Wish us luck. Her right leg is turning in quite a lot, all of us were really shocked to see just how much it tuned on Tuesday, even Ian and I commented to each other that we've never seen it that bad before. Thinking about it now, I think it may have been more obvious because she really wasn't very well. Today it's nowhere near as pronounced.

She'll be having 3 injections in total. 2 in the right leg, one in the left. Then will be in plasters about 3ish weeks afterwards (I think I heard that right). They said something about the gastrocnemius (thanks Google!) muscles. Wiki tells me that's the calf muscles. They're also doing hamstring on the right hand side. I really should learn all these proper terms for the muscles, then I might have some clue what they're talking about.

Only little doses of the Botox, Dr L said we may not see any difference (which makes me think, why bother) but he said better to start out small and increase as she needs it. It'll be interesting.

She'll have the injecitons under sedation, thank god. She'll have the nitrous oxide (laughing gas) and morphine as well. Dr L advises us to get hold of an anaesthetic mask so Isla doesn't freak out with it. Will see if Aunty Kate can hook us up with one of these.

Hip X-rays showed slight migration in the right hip, but nothing to be concerned about. Probably caused by the way her right leg is turning in. There was talk of theratogs, will have to investigate further.

We saw Michael the physio yesterday, and he introduced us to "Dynamic Taping". This funky bandage (fabrifoam) which is smooth one one side and grippy yet foamy on the other, which we wind around her leg, which helps to pull it out. It's awesome. Michael strapped her up yesterday over her orthotic and when Isla ran her leg was straight! Still pulled in a little when she walked, but a massive improvement. I showed Ian how to put it on last night and he was surprised by how well it worked. Will definitely have to stick with this!

Haven't taken photo's for a while. Will strap her up and take some pics today hopefully!

Bad Mummy...

2009-03-22T17:37:00.004+11:00

I have been SO very slack. I do genuinely come online to update Isla's blog but get distracted by Twitter *hides*

So, what can I tell you about Isla. We went and had a review by the paediatrician. That went well - it was very brief though. He mentioned that her therapists have all indicated that she is very intelligent. Height and weight all normal (although I didn't think to ask how tall she is now). Weighs 14.5kgs.

He gave me a phone number for a place called Rainbow Cottage to call. According to the Paed, 2 doctors, Dr W and Dr B would perform something they call a CAT assessment to see what sorts of aides etc Isla may need when she goes to Kindergarten next year (EEP!). I called the number but they told me to call a different number, so I did. Once I got hold of the people on the new number they told me I was out of the area and to call our local health service. So I call the local place at 12.58pm they tell me to call back at 1pm. How utterly irritating. Call them back and ask them to organise a CAT assessment for Isla - they don't even know what CAT stands for (neither do I!) and that they'll get an intake officer to contact me and help me book Isla into a local school. Can't be bothered explaining we won't live in this area next year..all too complicated. "Someone will call you back" they said. 2 weeks later, I'm still waiting.

Spoke to someone at the Spastic Centre. They gave me a number to call to join a parents group/morning tea?? type set up. Not sure that I'm ready for that. The thing is, Isla is mild - quite mild. We are very lucky. I would feel like a complete fraud to go to a parents of CP kids group and pretend that I know how hard it is for kids with CP - the reality is, I don't. I can't imagine the daily heartache and stresses that the parents of severely or even moderately effected children is like. My heart goes out to them.

We'll be joining a school starters group at some point in the near future, we're on a waiting list. I have a feeling the lady may have called me the other day, but I am locked out of my messages. Must call them tomorrow and see.

Botox clinic is on Wednesday. This will be interesting. We haven't had the botox clinic for quite a while, I can't even remember when the last one was, well, there was one in October but we didn't stick around because Dr L was running late and I was heavily preggers. I am quite looking forward to hearing what Dr L thinks about her progress. Must remember to take AFO's and hip XRays and Tap shoes - she walks really well in them!

Dancing, how she loves it. It's beautiful to see how excited she is about dancing - particularly the tap dancing. Parents have to wait outside for the 45 minute lessons, when they come out of the hall it's the cutest thing ever. As I said above, she walks surprisingly well in tap shoes, I think because they have a slight heel on them, and also because they obviously make a tapping noise when she makes a heel stirke. Thank god they're useful at $65 a pop.

Swimming lessons still going well. Mondays are her favourite day of the week. She can dog-paddle on a pool noodle, and went under water and paddled about a metre on her own last week, which she hated, but she did it nonetheless.

Will update again after Botox Clinic.

Beautiful.

2009-02-17T20:35:00.002+11:00

Amanda from Swish and Swanky sent this beautiful gift to Isla, out of the kindness of her heart. Amanda is such a gorgeous lady, thank-you SO much! Bella, as Isla has named her, hasn't left her side since she arrived yesterday, she even came to swimming lessons and to the physio today!

The ballerina was knitted by Rachel from Knitwish on Etsy - you MUST buy one of her creations, they are so beautifully made.

Thank-you, thank-you, thank-you Amanda!

Swimming.

2009-02-17T10:16:00.004+11:00

Isla started swimming lessons yesterday. She was freaking out before we got there, saying she didn't want to go in deep, and she didn't want to put her head under the water. She has been terribly afraid of water since NYD 08 when she was in an inflatable backyard pool at the IL's place.

I was down the back taking photo's of my niece and nephew, FIL & Ian were in the pool with her. Both boys got out of the pool and left Isla in there, thinking she was holding on to the side, she tried to walk across the pool (the water came up to her armpits) and she slipped. I came up from the back and saw her completely under the water, on her own and trying to get up. I didn't know how long she'd been under, single-handedly the scariest moment of my life.

Putting Isla into swimming lessons is something I'd been meaning to do for the longest time, but I finally decided that we've wasted enough time and made an enquiry at the local swim school. As luck would have it, there is another girl at the pool having lessons who has Spastic Diplegia too, and her mother agreed to Isla joining the lesson (which saved her $35 a lesson!). The other little girl, Sarah, is gorgeous. She is 6 and can swim freestyle and can almost do breaststroke. So great to see another person with the same condition as Isla, it gives me great confidence in what Isla will be able to do.

Isla loved the lesson by the time it was over, she was scared when she first went in and kept calling out, "Mama, I need you!" in a very high-pitched screetching voice! The instructor, Nicole, had no chance getting Isla to blow bubbles, and I thought we were going to be in for a loooong lesson when Isla asked me to give her a towel and wipe her face because it was a tiny bit wet!

But, once the teacher took Sarah for a little paddle, Isla very slowly put her face in the water and started blowing bubbles! And the rest, as they say, is history! She was floating on her back with the instructor, and even tried diving in!

When the lesson was over and she was out of the pool, little teeth chattering away, she said "I want to go back in the pool" LOL

She even insisted on wearing her swimming cap home and plans on taking it to show Michael her physio this afternoon!

I have some video of her using the kickboard too, will upload it shortly. I am so proud of her, she was so incredibly scared at the start of the lesson, and now she can't wait to go back!

Dancing..

2009-02-15T18:46:00.003+11:00

Isla was so excited on Saturday to be going to her first dancing lesson! The teacher told us she had to wear shorts and a shirt, and she was very upset that it was cold and raining and I made her wear trackies!

We got there at 11am, the teacher said that they do 45 minutes of dancing all up, 15 minutes of ballet, 15 of jazz and then finish with 15 of tap, but suggested that Isla may have to sit out the tap as it might be a bit difficult for her.

Anyway, when we walked in the hall, the teacher told us that we were late! The other teacher gave us the wrong time, it actually started at 10.30 so we missed the dancing that Isla could do. They told us to sit on the stage and watch the tap, and that upset Isla so much, she didn't understand why she couldn't dance, so I told her to stand up and do what the teachers told the girls to do.

She tried really hard, but couldn't quite get the heel down thing that they were doing, but I can see that it will be a very good thing for my little toe-walker! She spent all day yesterday walking around going over the entire lesson!

I have to go and buy her uniform this week, I can't wait! She's going to look beautiful!

Swimming lessons start tomorrow, I've asked Mum to go in the pool with her, I can't find my cosie. She's freaking out already about going under the water, so I'll tell her teacher about that when we meet tomorrow.

We're so busy these days now, Monday is swimming, Tuesday is physio, Wednesday & Thursday are kindy, and Friday is OT and Saturday is dancing!! At least OT & Physio aren't weekly!

Will update tomorrow with how Missy went in the pool!

Making calls...

2009-02-09T14:17:00.002+11:00

I've been a busy bee today so far, calling around for places for Isla doing various activities. I'm trying to find a dance class for her, she loves to dance so much, but it's so sad when you see how bad her co-ordination and balance is. I'm applying to different dance schools around the place and I hope that they accept her.

I've also found a swim school for her. Isla has never had swimming lessons before, but has paddled in a pool and dafter a very scary incident on NYD 2008 I've been meaning to put her into lessons, but then I fell pregnant and everything took a bit of a back seat. The swim schools I've spoken to have suggested that Isla may be able to go into a "normal" class, so we'll wait and see what happens.

I've also put us back on the waiting list for the Spastic Centre. Time for me to access everything available for Isla in order to get her ready for school and just to get a 2nd opinion on how she's going. I will continue to see Michael, who we adore, but I just want to see what other services/therapy groups are available to us. On that note, I might also see what the CP Clinic at the hospital has to offer.

I received a call from Isla's OT over the weekend too, and I'm trying to rebook an appointment with her too. We haven't seen Mel since around April or May of last year, which I am ashamed to admit, is WAY too long. I think Mel will be thrilled with the progress Isla has made in that time though :)

We see Michael again tomorrow to have this lot of plaster removed. Isla can't wait, and neither can I, I am so looking forward to seeing how much her range of movement has improved this week (last week's efforts were fantastic!). Hopefully she'll be just as good with the plaster saw this week as she was last week!

Let's Get Plastered!

2009-02-03T23:24:00.012+11:00

Lots of people have asked me how the plasters get put on Isla's legs, so today I took some snaps of the process. Michael, Isla's physio, explained everything to me, including giving me all the technical names for everything, but it's been a long day and I cannot remember any of it!!

Okay, here we go...
Step 1 - long cotton sock that goes from the toes to the knee. It's a long tube with no seams.

Step 2 - "toe socks" as Michael calls them, bits of this woolly/cottony stuff wrapped around her toes to keep them separated. This is removed after the plaster is finished.

Step 3 - Wrapping the foot and leg with the woolly stuff for a bit of padding.

Step 4 - foam (??) type padding that sticks across the top of the foot (where it joins the leg, very technical, I know!) and another along the achilles tendon to prevent any pressure spots. Another foam (padded) strip across the top of the woolly stuff.

Step 5 - Wrapping the foot in the old style plaster bandages (Gypsona I think)

Step 6 - Michael goes around her foot and reinforces it with some more slabs of plaster underneath, then folds the cotton sock over the top.

Step 7 - Reinforcing the foot of the plaster with a "backslab" of fibreglass. Michael made sure Isla had purple for this weeks cast, bless him.

Step 8 - Wrapping the fibreglass plaster around the foot and up the leg.

Voila! A perfectly plastered right leg :)

Isla responded really well to last weeks plaster, Michael was very happy. He said her range went from -5 degrees to +5 degrees which is awesome. This plaster should be the last lot for now, then she'll go back into her AFO's. Botox Clinic is in a month and a bit, so I'm hoping Isla really improves in the mean time. I feel so mean putting her in her long socks and AFO's in this stinking hot weather, but I don't really have a choice.

We were a bit concerned how Isla would react to the plaster saw to remove the cast, but she was so very brave. Michael told her it was just a noisy tickle saw, and she seemed happy with that. She did say that it was hurting at one point, but it had only gone through the plaster and not touched her, I think she meant more the way her leg was being held. Hopefully she'll be as good next week having this one removed!

Party time.

2009-02-01T08:24:00.003+11:00

Here are some photo's from Isla's birthday party.

Plasters...again

2009-02-01T07:44:00.004+11:00

We saw Michael the physio again the other week and Isla's right leg is the worst it's ever been, now she can't flex her foot to 90 degrees (or flat) so we made the decision to put her leg into plaster, which was put on last Tuesday and comes off this Tuesday.

So far, so good. Isla hasn't really complained much at all, other than saying, "I don't want any more plaster". Poor little thing. These plasters are different to the previous one's she had, because these one's aren't "soft casts" they're fibreglass (and pink!). With the soft casts, they were a bit bendy to touch (that is a terrible description, but I can't think of another way to put it) these one's are rock hard, and thus have to be removed with a plaster saw, which Michael has told Isla is a tickle saw, just a very noisy one. Thankfully, Ian is coming with me to have them removed, she is going to freak.right.out.

The plasters were supposed to go on last week, but I postponed that round so Isla could go to the beach while we stayed at The Entrance for my SIL's 30th Birthday party. I couldn't handle the idea that we'd be going up there and having her in plaster and not being able to go on the sand or in the water. Good decision, if I do say so myself.

Here's a pic of the little ballerina in the waiting room at the physio's rooms waiting to have her plaster done. I always plan on taking photo's of the plastering process, but my hands are always needed to help hold her leg in place and bits and pieces for Michael, but with Ian going this week, I think I may just be able to get a shot or two.

And, here are some pics from our time away. Will also upload some photo's from her birthday party.

Happy 4th Birthday

2009-01-12T12:56:00.002+11:00

Dear Isla,

Happy 4th Birthday my gorgeous little duck.

In the past year you've grown into the most beautiful child, inside and out. You make me laugh every single day with the things you say and do. At the moment you like to talk with your hands on your hips and you're quite defiant - but adorable nonetheless. You are about to start Kindy two days a week to get you ready for Big School next year.

You love to sing and dance, right now, your favourite song is "Poker Face" by Lady Gaga much to our dismay, although you are also quite partial to Rihanna and Katie Perry too. You absolutely love doing puzzles and using the computer. You can spell "Isla", "Nana", "Pop", "Troy", "Mum", "Dad" and "Emu".

In the past year you:
* Have learnt how to ride a bike
* Moved house twice
* Learnt to write your name and draw people
* Given up your binkies
* Have taught yourself how to do starjumps
* Became a big sister

Every single day you amaze me with how far you've come, you are such an inspiration. I love you so much my most beautiful little friend.

Big Sister

2008-12-06T19:27:00.003+11:00

It's been TOO long since I've updated Isla's blog. I have been incredibly slack (and pre-occupied) so while she's at Nanny & Poppy's place with Ian, I'll use the peace and quiet to update on my big princess.

Isla is doing very well. She's adjusted so well to all the goings-on around here lately, I am so proud of her. The biggest change for her to get used to has been the arrival of her little sister, Harper. Initially I was worried that Isla wouldn't respond very well to Harper coming home with us, but she's been such a treasure.

The first night that Harper was home with us, Isla went to bed as usual, but when Harper started crying at 1am, Isla woke up screaming, she hadn't heard H cry before and was scared LOL. Now, whenever H cries, Isla either puts her hands over her ears and waits for it to stop, or comes in to me saying, "I think we have a problem here" haha. She's too funny.

We haven't had physio since I last updated, it's been so hard to organise while I was pregnant (especially when her physio only works 2 days a week, and one of those days Isla is at kindy). Will try to get her in either this week or next, but it's difficult as I still can't drive after the c-section.

We've had a few lapses with the toilet this past week, I'm not sure if it's in response to Harper, or if she's just forgetting to tell us that she needs to go to the toilet. Hopefully it's just forgetfulness (is that even a word?) and things will work themselves out.

She's doing really well at Kindy, nothing but positive reports coming from there, although she has developed a bit of an attitude lately that seems a lot like her friend at Kindy, but then it could just be a phase as well.

Looking forward to Xmas this year, Isla is so excited. She's asking for a "Barbie Piano" - which is an electronic keyboard covered in Barbie - who I hate, but she's been asking for it for MONTHS now, so hopefully I can find one in the next 3 weeks! She's getting a dance cam thing which she'll be SO excited about, I can't wait to give it to her!

Not many new pics, I haven't had the time (lately!!) or the energy to take any, but will endeavour to take some tomorrow... famous last words...

Poor little Troy

2008-11-05T13:44:00.001+11:00

Being cuddled within an inch of his life...

Botox Clinic

2008-10-31T11:12:00.002+11:00

Didn't go exactly to plan.

Our appointment was to be the first after lunch, 1pm. We had to organise a hip X-Ray beforehand to have ready for the clinic and then two days before, Tracey from the hospital called to say we needed a new referral letter too.

So, I spent Wednesday morning racing around like a mad-woman going to the GP (and waiting for an hour to be seen) to get the referral letter, then off to Campbelltown to pick up the X-Rays from Saturday, then off to the Hospital. We got there just before 1pm to find out the clinic was running 2 hours late.

Initially I was a bit annoyed, but I guess you need to take into account that we see the Dr for nothing, and he is the leading specialist in Botox in Australia, the fact that we were scheduled to see him is quite a privilege indeed.

I ended up canceling the appointment, I was so tired and really couldn't even contemplate the idea of entertaining Isla in the hospital waiting room for a minimum of 2 hours, so when Michael came out, I canceled. I'm so glad that Michael was understanding, and he said to one of the other parents that, when a certain time came around, the Dr would have to leave regardless of who was waiting still.

I have to make an appointment to see him privately in his rooms, and I'm pretty certain that we wont get in to see him until late January at this stage, but we'll continue to see Michael in the meantime and will book in to the next clinic too.

What else has been happening? Isla has been sleeping in her bed ALL night for a week and a bit now. Ian and I are still alternating with putting her to bed, and she does sleep better on the nights that Ian puts her in, but she is improving for me which is great. We're trying to get her off her binkies too, we managed to cut her down to one on Wednesday night, but no such luck last night. We'll keep trying though.

It's meant to be 36 degrees here today, so far it's not so bad, although I haven't ventured out the door yet, I have a mountain of washing to do and I just cannot be bothered. Such is life!!

Old Photo's...

2008-10-20T13:32:00.009+11:00

I went through a disc of old photo's today, I can't believe how much she's changed from when she was little (and orange!) *sigh* Here's a random selection - mainly from her first year - I think I've posted a lot of photo's from later in her life anyway.

Isla sings her favourite song...

2008-10-17T15:23:00.002+11:00

Sleep, glorious Sleep!!

2008-10-16T12:34:00.003+11:00

Little Miss Isla has been slipping in to bed with us for God knows how long now, and with my belly getting more cumbersome with every second that passes and summer coming, we decided that it has to come to an end - although I secretly love snuggling up to her and knowing she's right there with me all the time.

She hasn't had any problems in actually going to bed and going to sleep, it's just staying in the bed once she wakes up, that's been the problem - and we want to have it sorted by the time her baby sister comes, we don't want any major changes when she's finally here!

2 nights ago, my Mum promised to buy Isla a bell for her bike if she stayed in her own bed all night for 5 nights. The first night, Isla woke up around midnight and said that she didn't want a bell for the bike anymore, she just wanted to sleep in with us LOL. She went to the toilet then back to bed, another half an hour later she was screaming because there was a monster in her room. Apparently, it flew from the top of her bookcase and out the window, it was white with zig zags and flappy wings. She lasted until 4.30am before coming in with us, then slept until 10.30am.

Last night I put her to bed (Ian and I alternate each night) and she fell asleep quite quickly. She stirred around midnight because the dog went into her room and cried next to her bed because he wanted to sleep with her. I woke up a few times through the night to check on her, and she was sound asleep each time. I was certain that Ian's alarm would have woken her up at 4.45am, but she didn't stir at all. Dad left for work around 6 and again, nothing. She woke up at 6.45 because she was tangled in her sheets.

So excited! It's been the longest time since she's had a loooooong sleep on her own, in her own bed. She was pretty pleased with herself too. Fingers crossed it's a constant from now on!

2008-10-10T18:05:00.003+11:00

It's been such a long time since I've taken proper photo's of Isla, so here are a few from today. Hoping to take a few more over the weekend (and convince Hubby I need a new lens!)

Plasters and more

2008-10-10T13:24:00.003+11:00

I've been slack with blogging this week, I forgot to update on Isla's last round of plasters. The last lot were not so successful, they only lasted 2 days before we had to take them off.

It was quite hot last Thursday and Isla had been running around like a headless chicken at pre-school all day. When she came home she said her foot was sore but still went to bed for a few hours before waking up, hysterical from the pain.

The poor little thing, she kept shaking her leg and couldn't talk properly because she was so sore. I filled up the laundry tub and ripped the plaster off as fast as I could, as soon as the right one was off she calmed down and almost fell asleep sitting up while I took the left one off.

There was a massive red welt on the join of the foot and even today, more than a week after taking it off, the marks are still there (although starting to fade).

Botox Clinic is at the end of the month so we'll know what's going to happen from there. Michael still thinks she'll be a good candidate for Botox, probably not until next year. She's off for an Xray tomorrow on her hips, this past week she's started to swing her right hip more and is turning her right foot in, so we want to get that sorted asap.

She's been so funny lately, and loves "role playing". Yesterday she insisted she was Belle from Disney's "Beauty and The Beast" (to the point where she had to wear yellow to Kindy for photo's because Belle's dress is yellow). Today she's been Harmony from The Fairies, although she's alternated it with another Fairy from the same show, Rhapsody. All good and well, I'm happy for her to pretend to be a fairy or a princess, but it's a bit hard when she'll only respond to the character's name. She made her teachers at Kindy call her Belle yesterday. I hope it's a fad...although I must admit, I'd rather call her Belle than Barbie, which was what she was hooked on last week.

More plasters

2008-09-29T14:40:00.003+10:00

I missed going with Isla for her 2nd round of plastering because I was sick with gastro - Mum and Ian went instead. All reports came back that Michael is extremely pleased with the progress Isla made after one week of casting, and he casted her again.

We took them off yesterday, it was particularly hot and we went to Ian's parents place for a bbq and we thought Isla would like to go for a swim in the paddling pool with her cousins, so we took them off a day earlier than we originally planned.

I only heard one little whimper from Isla this time in regards to her plasters - she was sleeping in our bed (she's getting tangled in her sheets with the plasters and can't move about without getting stuck) and I was asleep on the lounge - anyway, she woke up and said "Oh Daddy, my legs are hurting really badly" then rolled over and went back to sleep.

The best part of the latest round of plasters is that Isla is getting heel strikes! She actually wore away a patch of plaster on the heels of both plasters - which is brilliant news - means the plasters are doing exactly what they're meant to!

I have a photo of the heel strike marks, will upload them shortly.

We have plasters

2008-09-17T21:48:00.003+10:00

...and they're trashed already!

Isla was fitted with her plasters yesterday, she was so very brave. She only cried at the end once they were finished because she thought she wouldn't be able to walk in them, but Michael the physio told her she'd be able to run in them, and she was happy after that.

They haven't held her back in anything so far. She hasn't complained of any pain or discomfort yet either *touch wood*. She goes to pre-school tomorrow which will be interesting, I hope that they really keep an eye on her and make sure that she stays well away from the sand pit, I couldn't imagine anything worse than having plasters full of sand :S

Very proud of her, she takes it all in her stride, such a little trooper. We came home and decorated them with texta love hearts, that have all smooshed and now look like purple splodges, but she's happy with them! Michael put a non-slip piece on the bottom, which is hanging on by a thread and the part around the toes is starting to wear away too, mainly because she's so tight in her legs she just can't get her heels down :(

In other news, our little Chihuahua ran away - again - courtesy of Ian leaving our side gate open. Anyway, he was handed in to the local vets today, same story as last time, he'd been staying with a family who wanted to keep him and decided to take him to the vets to have his back leg checked. He's home now, safe and sound, snuggled up with Ian.

Father's Day

2008-09-09T12:16:00.004+10:00

Happy Father's Day!

Here are some pictures from the park and the obligatory Father's Day photo, in which Isla looks decidedly albino :S

Plasters

2008-09-04T13:14:00.002+10:00

We saw the physio again on Tuesday, and the tone in Isla's legs hasn't improved, so it's back into plasters for the little princess :(

Hopefully we'll get away with 2 weeks worth but we've booked in for 3. We discussed what sort to put on, and we decided to go with the ones to be cut off with the plaster saw, but now I'm not too sure - Isla is terrified of those automatic hand driers in public toilets, so a plaster saw will scare the living crap out of her. I think it's best we go for the ones that can be soaked off. And she can pick the colour!

She doesn't seem concerned about it thus far, I've tried explaining it to her, but I guess she's still too little to comprehend it all, and she was 1.5 when she had the last lot of casting done. I explained that it's just like when we had her helpers made, they put plaster on her legs then cut it off. We'll see how we go. First round is on the 16th of September.

I spoke to pre-school today about how she'll go there with the plasters on, they don't think she'll have a problem. I was contemplating letting her stay home for the time that she's wearing them, but I suppose as long as they keep her out of the sandpit she'll be fine!

We've had no more accidents with the toilet training either! Very proud of her! We're even in undies at night time, again, with no accidents. She's no longer scared of poo's on the toilet (or anywhere for that matter, she has always struggled with them) and now she heads off to the toilet when she can feel them! It's so wonderful!!

fgggggggggyghhjhjjjhjhjjjgt987998989uijiijuijiujijoijijiinniuhujunh ujhunjhn uuuuuuuujhjjjjjjjjj

2008-08-30T16:14:00.005+10:00

y7y7yyyyyyyyyyyy88yy6786787897978978888888888888888888888ggjgjjggggggg,mbg g g mmmmmgmmgmbbbbbb bbbbbbbbbbbbbbbbbbbbbbby6kookkkkkkkkkkkkkkkkkkkkkkkkkkkkkkbbbbbbbbbbbbbbbb bbbbbbbbbbbbbbbblghhhhkkkkhgkjkkkkkkkkkkkk 699u86yu

Love Isla - who was practicing her "lettering" LOL

On the toilet...

2008-08-27T23:51:00.002+10:00

Isla was toilet trained earlier in the year but somehow winded back up in nappies, I say somehow, I know exactly why but not the place to go into it...I digress...The other week I asked her to get a new nappy for me and she looked in the packet and said "there won't be enough for baby sister" and decided she would wear undies!

She was doing so well last week, and I promised her a much longed after ironing board and toy iron (she'd been asking for this for a while). I gave them to her on Thursday night after pre-school and Friday she was having accidents left, right and centre. Turns out she thought that she only had to do wee's in the toilet to get the toy, and now that she had it, she didn't need to anymore!

So, we battled through the weekend, without much success, and Monday we had BIG accidents :( It was so sad to see her go backwards after doing so well with it. So Tuesday we went to visit my Mum who'd been away for a week or two. We went to the local shopping centre and Isla decieded she wanted to go to the toilet, but couldn't once we got to the loo's. Once we'd walked back to the food court she had to go again, so this time I took her to the parents room with the little toilets. She tried again but couldn't go. Then once we walked out of the toilets she said she needed to go again and this time we had success! She managed to do another 5 on the toilet that day and we've had no accidents today *touch wood*.

Very proud of her, and she's very proud of herself :)

Her strong independant streak is coming through with the toileting too, today we were only allowed to help her get up onto her toilet ladder, then I had to wait in the kitchen and she'd go to the toilet, get off the ladder and wipe herself before calling me in to see the "yellow water". She's too grown up sometimes!

2008-08-11T14:07:00.001+10:00

Waaaah! It's blown :( But she's still beautiful :)

New Helpers

2008-08-08T13:24:00.004+10:00

I picked these up yesterday while Isla was at Kindy. I can't believe how big they are, my little girl isn't so little anymore!

We have a physio appointment on Wednesday to see how Isla is settling in with the new orthotics. She chose a big pair of skater shoes to wear with them last night, complete with skull and crossbones!

Her stuttering seems to be easing off a little (thankfully) but occasionally she gets a bit caught up. Still need to speak to Speechie about it.

Little Miss is still very excited about her "baby sister", and is insisting she's going to be called "Arina" as in ballerina! We picked up the new baby carseat this week, and I put some gorgeous peacock themed linen on layby for her too. Now all we need is to wait 16 weeks, and to put the cot together and we're set! How exciting!

It's been a while!

2008-08-04T07:58:00.002+10:00

It's been so long since I've updated Isla's blog - I've been busy posting weekly pregnancy updates on A Baby Story - my pregnancy blog, and sadly, this one has been rather neglected.

A lot has happened since I last updated here. Isla is doing very well, we pick up new helpers this week, very exciting. When I spoke to the lady at the Orthotists office, she asked if we wanted the butterfly stickers still, and I said yes, but I'm not too sure whether they're just stickers or they'll be melted into the thermo-plastic.

We went away for Chrismas in July last weekend to Sussex Inlet which was lovely. Quite cold, but we had a nice log fire to keep us cosy and warm. Isla insisted on going for a swim at the beach on the Saturday, despite the freezing temperatures! See pics of my little beach bunny!

One thing that is causing us a bit of concern with little Isla is that she's developed a stutter :( It came on suddenly, she's always been able to speak very, vwey well, and now somedays, has real trouble in saying simple words. It's worse when she's tired or over-excited, but her OT picked up on it the other week while we were visiting her briefly (and she wasn't even doing it to the extent that she normally does). OT is going to speak to Isla's speechie and see if we can get a referal to the Stuttering Clinic at our local hospital.

Isla is obsessed with drawing at the moment, she always has a pen, pencil or crayon in her hand. She can draw really good faces now, and is learning to colour within the lines of pictures. She's also started painting a lot too - and no longer with just red paint! When she was at FDC she would only ever paint/colour with red :S

Isla is very excited about getting a baby sister, we found out in June that we're having another girl, and Isla is already making lots of plans! "My baby sister can sleep in my room with me" she said the other day, I explained to her that little babies cry a lot when they're new and don't sleep very much, so she said, "Okay Mummy, my baby sister can sleep with you then". Hahaha!

Isla, pregnancy & sadness

2008-05-28T11:49:00.004+10:00

So, we've moved again. The 5th time in 3 years. We must look like fugitives.

Things are so much more relaxed here, our own space, no uncomfortable circumstances - just peace and quiet. Ahhhh!

Isla was casted at the hospital yesterday for her new "helpers". She was so brave, only cried a little at the beginning because she didn't know what was going on, but as soon as they got the plasters out of the water and started rolling them around her legs she watched on, very intrigued by it all. The helpers should arrive in 2 weeks at Michael's rooms. Can't wait! It means all new shoes and socks too!

14 weeks pregnant now, and I've scheduled my first appointment at the 'new' hospital, which was where I was meant to have Isla, but couldn't because I was too high risk. I am glad to be going back there, I'm familiar with the Birthing Unit & maternity ward, and hopefully my favourite midwife Renae still works there - I have my fingers crossed for this to be the case, she made such a huge impact on my pregnancy with Isla, I'd love for her to be involved in my care with this one. Failing that, a lady I work with, Lauren, is best friends with the head midwife at the hosptial, so that's good to know!

Feeling little bubble/popping sensations now, which I'm convinced is the baby. I felt movement with Isla at 15 weeks, so it's entirely possible - and very exciting.

The plan for work is to stay until around the end of September, so around 7 months, of course that all depends on whether or not I am actually allowed to or stuck on bloody bedrest like I was with Isla. At this early stage, I plan to be off until the littlest member of our family is 6 months old (if finances permit) but we'll take it however it comes.

It's difficult talking about this pregnancy with Ian, because he just can't get interested (for lack of a better word) until the baby is really here, which is so frustrating, but I understand what he's saying. So, he's decided that he now doesn't want to know the sex of the baby and I'm thinking I'd like to know - with Isla we were the complete oppoiste! My only reason for wanting to know is in case I have another GA, I don't want everyone knowing the sex of my baby before me.

It's stirred a lot of raw emotions that I still have following Isla's birth. I opted for a GA because everything felt completely out of control and I was scared. I wasn't in a position to completely comprehend her early arrival under such stressed conditions. Of course, I regret it now, completely and utterly. My main issues still surround what happened after her birth, that will no doubt haunt me for the rest of my days.

We requested no visitors when Isla was born, so that we'd have time to bond and adjust to having our new little person. Following the C-Section, I wasn't well at all. The after-birth contractions were hideous, and I was so groggy and unwell I had double vision and was on oxygen for the next 16 hours after her birth. Not the type of conditions I wanted to be seen in by anyone (another reason we requested no visitors). When I wasn't well, Ian's phone was ringing pretty much constantly, and he kept asking me whether his parents could come and see Isla. I can't even remember if I answered him, given he knew what my wishes were. Next thing I remember, my SIL is giving my daughter a cuddle and a bottle, my MIL had unwrapped her and looked her over and even questioned her leg to the nurses - and I hadn't even held her yet. It breaks my heart to think about, even now, 3.5yrs on.

So, this time, no one is knowing the date of our c-section, other than my Mum, who will be minding Isla at the time. I'm going to draw up a birth plan and it will be adhered to - to the letter. I've discussed all of this with Ian, and he didn't realise exactly how much it meant to me when Isla was born, which still shits me up the wall, but, unfortunately, I can't turn back the clock. He knows exactly what I want this time, without a shadow of a doubt.

Perhaps I should start that now?

Still no new pics to upload, waiting on our internet to be installed and Dad's computer is just way too slow for me to even bother uploading pics onto.

An update

2008-05-13T12:20:00.004+10:00

It's been weeks and weeks since I've updated here, so I'm not quite sure where to start...

12 weeks pregnant now, baby due on the 25th of November. Had my first appointment at the hospital this morning and it all went well. I meant to ask them if I could listen to the heartbeat but I completely forgot.

At this stage, I don't have to go back until the 1st of July after I have my 18wk ultrasound around the 23rd of June, once that is done, they'll know where the placenta is and that will determine whether I see the midwives at the clinic or the doctors. We'll wait and see.

Still feeling pretty ordinary most days, nothing much I feel like eating or drinking for that matter. I was weighed in at the hospital this morning and I'm 5kgs less than I was about 3 weeks ago when I got up the nerve to stand on the scales! I guess that's one good thing about the fairly constant nausea!

Poor Ian has been off work for a few weeks now with an ankle problem, he fell down a gutter while doing a delivery at work, and has just informed me that he has to have a CT scan to look for a fracture because the swelling hasn't gone down since it happened. Fingers crossed he's okay!

Isla is doing really well, she has just worked out how to ride her bicycle, with thanks to her Poppy, who's made stirrups for the pedals so her feet don't slip off. She will ride for the longest time, only getting off because her fingers are sore from holding the handle bars so long!

Still not having much luck with getting her to sleep all night in her own bed. We've had 2 nights in the last 4 weeks that she's managed to last all night. She's normally waking around 2am and won't go back to sleep on her own. *sigh*

I haven't taken many photo's of her at all lately, I've been pretty slack, I'll have to take her out tomorrow and snap away! Here are some pics of our trip to Forster :)

With child.

2008-03-27T13:46:00.004+11:00

Due sometime in November - another Summer baby :)

What to do....???

2008-03-18T23:45:00.003+11:00

We saw the Rehab specialist/Botox Dr on Wednesday, although he never calls it botox, always uses it's proper name, "Botulinum Toxin".

Isla isn't improving, and he's suggested we go ahead with the Botulinum Toxin injections in May. He's held a spot for her since last year in the event that she would in fact, require the injections. They've made the decision to do them under sedation, not GA or Nitrous Oxide as they first planned (laughing gas) because it would make the whole event even more traumatic for little Isla.

So, after hearing for at least 12 months, possibly 18 months that the Botox will be so beneficial for Isla etc, the Dr informs me that in America, the FDA is holding an inquest into the use of Botulinum Toxin after several children died after being injected with it, to treat lowe limb spasticity (which is what Isla has). He also said that it was highly likely that Isla will have to go back into plaster, which would absolutely break my heart, and hers too. Another draw back is that it may cause bowel incontinence, which would set her back in her toileting.

I was given the admisssion forms to fill out, which I've done, but I haven't been able to send them in. The Dr mentioned that as far as he's aware, the children who died in the US were given the botulinum toxin via IV and in much larger doses than what he uses here in Australia, which may be the reason for the fatalities, although he admitted to not knowing all the facts surrounding the case.

From what research I've been able to do so far, it seems that the Children's Hospital's in QLD have stopped all Botox treatments until the FDA release their findings. Isla's Dr has also said that he's happy to postpone the treatment until that same time so we can make a more informed decision on whether to proceed with the injections or not. To date, no deaths have been reported in Australia from the use of Botox for lower limb spasticity.

The deaths were caused by botulism, whereby the botulinum toxin had spread beyond the injection site and caused paralysis of the mouth, tongue and respiratory system. Very, very scary to think about this posibility.

So, I'm thinking the best option for now at least is to say no to the injections, I am going to have to discuss things with Michael and Dr L, and see what other suggestions they can give me to help Isla. She's having problems with her knees now too, they're starting to turn inwards, which is a worry, and Dr L says that her feet are still very bad and that she'll be complaining of bad foot pain when she's older, my poor little girl. She's already complaining of sore toes all the time.

I have to book her in to see the Orthotist again, she's outgrown another pair of orthotics. So much for them lasting 12-18 months each. This lot have only lasted about 8 months (although truth be told, she has been unable to fit in them properly since just before Christmas.

Good news on the OT front though, Mel is stoked at how well Isla is doing.

Boys will be boys...

2008-03-11T07:59:00.003+11:00

This photo was from Isla's birthday in January, but it's a great shot of Ian in full flight, about to do a massive belly-whack from the looks of things.

"The water was YELLOW!"

2008-03-10T13:04:00.006+11:00

This was the message Isla had for the family this morning, after her first successful wee in the toilet :D

I know she's 3 and it's late to be toilet training, but Isla's issues with balance have really hindered us in the past, plus the incident with FDC had scared her off the poor little lady.

So, we're in undies, not knickers Mummy, thank-you very much. And Dora ones at that. I always swore that I'd never dress my child in licensed clothing, and now she's sporting not only Dora undies, but shoes too. How shameful.

Botox Clinic on Wednesday (if they managed to find the numbers to fill the day) then Mel's coming over to have a look and see whether we need any equipment in the bathroom for Isla...

Isla's booked in for the 1st of May for Botox, and I'm in two minds about it all. On one hand, it could release the spastic muscles and only help her gait improve more. On the other hand, it may not work at all, and I really struggle with the idea of putting her into hospital and injecting her, the possibility of her needing to go back into plasters, and lose the strength in her legs. It's all too much. I know Michael, Dr L & Dr F wouldn't suggest it to us if they didn't think it was going to be beneficial, and I know that they have great expertise in this area, but at the moment, my heart is in charge and I feel like just bundling her up in my arms and running far, far away from everything medical.

The Spastic Centre have been calling, they want to have Isla back in the older group this year, and I have no idea what to do. In the group she used to be in, she was the most advanced (I can't remember if she was actually walking at the stage) so we received the least amount of "attention" from the therapists, and Isla doesn't particularly like the group sessions either...Decisions, decisions.

Busy, Busy, Busy

2008-03-06T22:25:00.005+11:00

These past few weeks I haven't stopped, it's been go go go around here!

We had Ian's cousin's wedding 2 weekends ago, Allison's 30th last weekend, a 40th this weekend, plans with friends the following weekend, then Easter and Ian's Mum's bday the weekend after that, then we move house the weekend after that. Add in the physio, OT and Botox Clinics, the extra shifts at work, a quick trip to Terrigal, Isla starting a new Kindy - argh! We should manage some time to ourselves somewhere around April!

Isla has been wonderful with all the goings-on, even had her first sleep over ever at Nana's place (my Mum's) the night we went to the wedding. Much harder for me than it was for her, even though I've spent nights away from her she's always been with Ian, so it was a big step for us to have her sleeping away from the two of us. From all reports the two had a great time, and Mum is still exhausted!

We spoke to Isla's OT, Mel, last week who said that she expected Isla to come out of the assessment a few months behind, but, amazingly, is in the normal range. I am so excited, it's probably the first time Isla's had an assessment and the word "normal" has been used!

Last night (wednesday) Ian, Isla and I went to Terrigal to catch up with Bron, Andrew and Cooper while they were in town for Coops' ABR. I can't get over how improved Coops is now, his posture, his vocabulary, his stability, it's nothing short of amazing! And, he's crawling around, such a beautiful sight! Bron looked beautiful, sporting a gorgeous little bump *wub* Here's a pic of Gorgeous Cooper!

Allison's 80's inspired 30th was a crack up, I have a tonne of pics, none of me, I really should have got one with Allison in her feral pink legwarmers...there may be one floating around somewhere.

2008-02-25T17:30:00.003+11:00

Welcome Home Troy the boy!

2008-02-25T16:53:00.005+11:00

My little Chihuahua, Troy, has been staying with my Dad because we're unable to have pets in our rental property. Dad is now affectionately known as "Poppy Troy" since being awarded this title from Isla.

About three or four weeks ago, Troy escaped from Dad's yard by digging under a shonky fence pailing. We'd feared the worst for him, given that he's microchipped and we hadn't heard anything from a pound/rspca etc, but on Saturday morning Ian received a call that Troy had been rescued by a family while roaming the streets. They fell in love with him, and called him "Stevie" and wanted to keep him, but took him to the vets to see if he was microchipped.

So, he's home, happy & healthy. Isla and I bought him a collar this morning and went to visit him, thankfully the pet store had run out of pink collars, so Isla chose him purple. He did originally have one but almost hanged himself in the low-lying plants in the backyard so we removed it. Never again though!

Who is this young lady

2008-02-11T22:55:00.000+11:00

and where has my baby gone?

2008 Australian Sprintcar Title

2008-02-04T00:43:00.001+11:00

Parramatta City Raceway is holding the 46th (??) Australian Sprintcar Title this weekend...Dad and I were only going to go for 1 night instead of 3, so we decided to go the final night, which we assumed was the Saturday night (despite Thursday and Friday being washed out). Much to our surprise, Saturday was heat races only!

So, we decided to go again tonight (Sunday) only to have it pour down again, and the night's racing was cancelled! Hurumph!

Rescheduled for the 9th of Feb, can't wait. If Saturday night is anything to go by, I think Garry Brazier will take home the title, despite the fact that I can't stand him, he is a very impressive driver. Sartori was very fast, and 2nd on points at this stage, and Brooke was on a charge too. If I could choose the result, I'd go Robbie Farr, Max Dumesny then Sammy Walsh. Having said that, it'll be Brazier, Tatnell, Madsen 1,2,3.

Took the P&S on Saturday night and got a few good snaps, but I think the 400D will have to come with me next weekend and we'll go for a wander through the pits :) Most of my pics from the night are of Max & Robbie, and some impressive shots of the catch-fence :P

OT Assessment

2008-01-30T11:43:00.002+11:00

Two weeks ago we had an OT assessment with Mel at the Hospital. It was purely to see where she's at.. Here's the report...

"Isla has been attending Occupational Therapy since November 2006. Her presenting problem related to mirroring of her hand movements. She has attended regular appointments on a monthly basis in which she has been provided activities to decrease the presence of mirroring her hand movements.

A review assessment was conducted today to determine her level of function for her fine motor skills.

Results of Assessment
The assessment conducted was related to her motor skill development. Isla was assessed using the following assessment tools:

* Parent Questionnaire
* Peabody Developmental Motor Scale (2nd Ed)
* Non-standard observations.

Assessment Results
Peabody Developmental Motor Scale (2nd Edition)
The Peabody Developmental Motor Scales-II is comprised of six sub-tests that measure interrelated motor abilities that develop early in life. The assessment measures both gross and fine motor skills, however for the purpose of this assessment, only the fine motor component was utilised. Isla achieved the following results:

Component Standard Score Age equiv.
Grasping 9 34 months
Visual Motor Integration 9 34 months

* Grasping
Isla swapped hands throughout the assessment, Her mother reported that she predominately uses her left hand for feeding and ball skills, however swaps for fine motor activities. She held her pencil with a quadripod grasp (Placed her middle finger on the pencil as opposed to resting it underneath)

* Visual Motor Integration
Isla was able to build a tower of 10 blocks. She also attempted to imitate building structures such as a bridge and a wall, however demonstrated difficulty with copying the structures exacrtly. She was able to copy a vertical and horizontal stroke and a circle, however was unable to copy a cross. She has not yet learnt to grasp scissors with one hand and was unable to snip the edge of the paper. She was able to thread beads onto a string and laced a piece of string onto a lacing card.

Recommendations
1. It is recommended that Isla continue to attend Occupational Therapy to monitor her scissor skills development and hand preference".

So there you have it, Isla is only "delayed" by 2 months with fine motor now which is unreal! We're trying to work out which hand she'll write with. She's always been prone to using her left hand for feeding, throwing etc, and kicks with her left foot too, but has more control and uses an almost proper finger grip when drawing with her right. We need to build her stamina with the one hand, so in effect, stop her from switching hands half way through drawing. We stick a sticker on the hand she uses first and tell her this is her drawing hand, and constantly make sure we keep on her about this.

By the way, the monkey is 12kgs now :)

Kids say the darndest things..

2008-01-22T12:24:00.003+11:00

I thought I should make a record and constantly update when Isla says something cute/funny..I originally started this post at the end of 2007.
- - - - - - - - -
On the way to Poppy's house:

Isla: "Mummy, where are we going?"
Me: "We're going to see Poppy"
Isla: "Mummy, is Poppy awake?"
Me: "Yes, Poppy's awake"
Isla: "Oh, this is going to be great!! I so excited!"
- - - - - - - - -
Sitting in the car at Austinmer Beach watching the waves:
Isla: "Oh my God! These waves are incredible! They the biggest waves I ever seen!"
- - - - - - - - -
Sitting at the Dr's waiting room, Isla was playing with one of those wall-mounted toys with the steering wheel/wavy mirror etc. It was Sea themed...
Isla: (at the top of her lungs) "These are Mummy's crabs"
Me: "No sweetheart, they're not Mummy's, they're toy crabs"
Isla: "No Mummy, YOUR crabs"
- - - - - - - - - -
While attempting to sit in the fridge:
Me: "Isla, the fridge isn't for sitting, hop out please"
Isla: "Mum, stop telling me everything"
- - - - - - - - - -
Watching her bath fill up:
"Oh Mummy, this bath is marvellous"
- - - - - - - - - -
Crying in bed:
Me: "What's the matter sweetheart?"
Isla: "I scared"
Me: "What are you scared of?"
Isla: "Owls"
- - - - - - - - - -
Ian: "Isla, it's nearly bed time, you can play for 5 minutes then it's time for bed"
Isla: "Daaaad, that's not a good idea!"
- - - - - - - - - -
Isla: "I can't sleep in my room anymore, I too scared"
Me: "What are you scared of?"
Isla: "Oh you know, snakes, owls, that sort of stuff"
- - - - - - - - - -
Me: "Isla, what do you think we should call baby sister?"
Isla: "Arina, you know, like Ballerina"

I want to walk like the others

2008-01-09T22:23:00.002+11:00

The little girl at the end of this clip walks just like my Isla does.

Happy 3rd Birthday Isla

2008-01-07T17:37:00.001+11:00

I can't believe my little lady is 3 and obviously she doesn't believe it either, because she insists that she's 7.

She has been so excited about having a party for the last week, every morning she'd wake up and ask, "Is it my party today?". Each time we went out she'd tell whoever we'd speak to that she was having a party!

We all had a lovely day, although it was SO incredibly hot and muggy! I think almost all of my photo's from the day everyone has rosy cheeks and beads of sweat on their brow!

I think Isla was happy with her party, she'd given Ian and I strict requirements for the day, ie, "pink balloons and streamers and deca-ations (as she calls them) and cakes with lots of sprinkles on top".

I couldn't be arsed making a pretty cake like the merry-go-round I made last year, so this year it was lots of cupcakes, with sprinkles as per Isla's instructions! Some were plain, others had little decorative butterflies :)

Isla received so many presents, she was spoiled rotten! Her favourite gifts for the day were the ladybug outfit from Nanny & Poppy, playdough from Poppy Troy and the Dora parifanalia from Lyn & Rod and Allison & Brad.

She finished the day by going to Steve & Marie's place for a swim to cool off with Ian, while I went to the Speedway with my Father-In-Law Kevin and my Dad, where Ian's cousin Robbie came 2nd in the $50,000 race!

Happy New Year!

2008-01-01T11:18:00.001+11:00

Happy New Year! Here's hoping 2008 is a cracker...

We welcomed in the New Year with Allison & Brad and their friends, at their place.

Had a lovely night, Isla lasted until midnight but crashed soon after!

Sprintcars

2007-12-30T00:29:00.001+11:00

I had the night "off" tonight, and went to PCR with Dad to watch some Sprintcar racing. It's been ages since I've been with Dad just to watch and not go in the pits and work on Denis' car...The pic to the left is of Madsen's new car...not sure I like the orange paint..I still like his old Bikebiz blue and yellow...

Anyway, Schatz won - surprise, surprise. Kinser second, Pitman third. Madsen made it into the main despite not finishing his heat.

Took the camera along, still have a long way to go, but not too disappointed with some of the pics considering most of them were at race pace!

Skip Jackson got upside down, Brazier crashed, Sartori and Brady crashed too...Sammy Walsh started off pole after winning the dash...not too sure where he finished though.

Enjoy this pic of a man in his t-shirt...I took this photo for Ian, and surprisingly he loves the shirt!

Season's Greetings

2007-12-28T00:22:00.001+11:00

Season's Greetings...

Christmas was weird this year, I can't quite put my finger on why, but it there was just something missing I guess...maybe it was because it was the first year that we didn't go to Nan's house...

Anyway, we had a nice lunch with Ian's side of the family, then had my sister, Dad and Ian's friend Pato over for dinner afterwards. We sat around and laughed, drank and watched Summer Heights High all night long!

Isla received so many presents, her favourites were her toy camera, Dora tea set and her Dora backpack (this was the big winner). I had a fall coming down the in-laws driveway and must have hurt Isla's foot at the same time (I was holding her) because she complained that she couldn't walk on Xmas day, and could barely put any weight on it on Boxing day but seemed okay today when she went back to daycare, although walked a little gingerly on it.

Boxing Night we went to Mum's new apartment for dinner as we didn't really get the chance to catch up with her on Xmas day, although we did see her briefly when we went to visit my Nan at the nursing home. Mum bought Isla a microphone, and Isla treated us to "We wish you a Merry Christmas" at least 20 times!

Ian's on holidays until the 2nd...I bet we're sick of each other well before then :P

The latest update on Isla

2007-12-19T12:01:00.001+11:00

We saw Michael for the first time in almost 6 months yesterday. He's very pleased with Isla's progress. She can now stand up on her own (without holding on to anything) and is walking well and not falling over as much.

Michael agreed with Ian and I, in that Isla walks with more control when she doesn't have her orthotics on, but it's coming at a price. The bottom of her feet are collapsing on the side, and Dr L is concerned that when she's older the bones may fuse together and she'll require surgery. I'll have to take a photo of her feet to better explain...

They're concerned about her legs, she's always had higher tone in her right leg (and it is marginally shorter than the left) but, and here's the curveball, she leads with her right which means it's her dominant leg...she should be leading with her left as it's the less effected leg, but it's weaker.

The plan is this, 1st of May, Isla is on the list to go to the Sydney Children's Hospital for the Botox injections. In the meantime, they're going to lock the hinge on the AFO's so that she can't lean forward as much with them on. She has a tendency to crouch when she walks (only slightly, I'd not really noticed until it was pointed out to me yesterday by Michael) so locking the hinge will make her stand up straighter. We need to do some strengthening exercises for her hamstrings, as the concern is that she won't be able to walk after having the botox (it will weaken her muscles initially) so we need to have her ready for that.

They give them laughing gas, but the mask needs to be held on the entire time and both Michael and I aren't too sure she'd cope very well with that. Dr L suggested pethadine as it's injected and can also knock little ones out, so there's another possibility, but it's a bit much to have to think of right now, and I honestly don't know how she'll react to it all.

When she walks with the AFO's on there's a lot of swivelling in her trunk, which is essentially because her left hand side isn't really working as well as it should, and she has to twist her trunk to swing her left side around. Again, she shouldn't be doing this as the left side is meant to be the stronger side.

We're going to increase physio appointments to every 2ish weeks to try and fix these issues. Poor little mite.

A photostory

2007-12-15T18:38:00.001+11:00

Santa

2007-12-15T14:30:00.002+11:00

We finally managed a photograph with the man in red! Isla was so wonderful, genuinely excited! Although, she was waiting on his knee for a little while smiling away because the photographer was talking to me about Ataxia, so it's the tail-end of her smile, but it's a Santa photo nonetheless!

She's so grown up now, I can barely remember what it was like when she was so little. *sigh*
She's decided that Santa will bring her a pink bicycle, so I found one in an online catalogue and was showing Ian while she was outside playing, but forgot to close the webpage and Isla came in and saw it and said, "Oh, a Christmas bicycle!" LOL She's determined to have a pink bicycle one way or another, look at what she did to her old trike...(you may have to enlarge it to see the full effect!)

2007-12-14T14:29:00.001+11:00

Cuddles with Spot

2007-12-12T14:19:00.000+11:00

Ho Ho Ho

2007-12-05T13:29:00.001+11:00

Isla met Santa this evening. It was the Family Daycare Children's Christmas party, so I decided to take her along. It was chaotic, so many children running everywhere, playing bullrush, wrestling, it was bizarre. Isla danced on top of a table while they sang songs in the hall and gave an almight rendition of "We wish you a Merry Christmas" with plenty of gusto. After that we went outside for another play, and the Paddle Pop lion handed out ice-creams so I had one very happy little girl, who was even happier at Santa's arrival in the meantime! And to top it off, he gave her a packet of twisties, her all time favourite!

We met another Mum and little boy with Cerebral Palsy, he had Spastic Quadriplegia and was completely adorable. He had the most unreal AFO's, blue with rockets on them!

I'm glad I decided to go. Often I would simply ignore an invitation, but thought that it would be important to Isla, so we went. Sometimes it's confronting to see all the other kids around Isla's age running around and playing with each other while she struggles to walk without falling over. Initially I felt like bursting into tears just watching her. She walked around the grass while kids tore by her either side and were running and jumping around...and it didn't bother her. She was so happy just walking around, taking it all in. She's such an amazing little creature. She insisted on sitting "like a big girl" with her legs stretched out in front of her, and propping herself up against me for stability - I'm sure it was because all the other kids were sitting like that.

We had a few tears when we left, Isla wanted to back outside and play with the kids, but it was starting to sprinkle, so I dediced it was time to leave, we'd been there almost 2 hours anyway, she sobbed most of the way home.

Happy 2nd Birthday to Princess Andie!

Terrible Two's...continued

2007-12-03T13:30:00.001+11:00

Isla's behaviour is getting a little better...we're still privy to the tantrums though, not as frequent, but still present.

Has me wondering why. Is it simply the terrible twos? Sensory overload - too many things going on at once? Too many choices? Growing pains? Testing the boundaries? Growth Spurt?

I think it's a combination of all of the above. I've limited the choices and she seems to be responding better. No more "What do you want for breakfast?" open ended questions. Limiting her to 2 choices seems to be plenty. Speaking of food, her eating is improving, so perhaps a growth spurt? Her shoes are getting too small and she's been complaining of sore toes and legs which leads me to the Growing Pains conclusion.

Isla's sleeping has improved out of sight, and could potentially be linked to the decrease in hissy fits and the weight gain. I remember Michael once said that her weight would improve once her sleeping was sorted out. She'll happily go to bed on her own now, and with no day sleeps she's managing 12-14 hours of sleep a night :) Sleep time used to be such a battle for us, often she'd drop off on the lounge or giving us a cuddle, but it was all getting too much for all of us.

Isla has a new friend, "Dolly" - a gift from my Mum when Isla was about 7 weeks old. Dolly has sat on the shelves in the toy room for nearly 3 years and has finally won a place in Isla's heart. Dolly goes everywhere with us now, gets tucked into bed and is a little shadow of my little shadow!

Well that was scary

2007-12-01T13:55:00.001+11:00

Had a busy day today. Went to the shopping centre to finalise Xmas presents, bought two then had to come home to go Fridge shopping with my Mum.

We went to 2 places and ended up getting a really good deal at the 2nd place we went to, and they're going to store it there at the shop until we pick it up the morning that Mum moves into her new home. Isla would have been with us, but she was asleep when Mum arrived at our place and Ian told us to leave her there instead of waking her up to go in the car.

After we'd finished fridge shopping we intended on going home and picking up Isla and choofing off to Ikea, but again Ian said to leave her at home because she was quite happy playing with him. So we did. We headed off for a 'quick' trip and ended up staying for hours! Mum picked up the chair and a tv stand that she was after and I bought a few Xmas presents along the way. Once we'd finished we went to grab something to eat because we'd shopped through lunch. I went up to the car to load all the crap in it that we'd bought while Mum went back down to the shop because they hadn't given her the right meal.

So, I'm loading the car, very hungry for my lunch (it was almost 6pm at this stage) when all this blood started pouring down my throat! I was freaking out! So much blood, mouthful after mouthful, just constant dribble down my throat! Mum was cool as a cucumber and after several failed attempts we made it to the Emergency department of nearby Concord Hospital. Mum was very brave - she's hideously afraid of hospitals, so the fact that she came in and sat in the triage area of the ED was pretty amazing! I thought she'd stay in the car for sure!

Fortunately for me, I fear I am not much braver than my Mum, the place was empty. I only saw 1 person in a bed and another one on a trolley, so I was seen to after not even 5 minutes of waiting after being triaged. The Dr I saw confirmed that it was a blood clot from my tonsillectomy that had dislodged and was now sitting in my throat waiting to be swallowed - yuck! He said the bleeding was normal when they come away and that there was another one in my throat waiting to do the same thing! Should it happen again I need to put Ice on my throat as it constricts the ventricles of the blood vessels and to go to the hospital if the bleeding lasts more than 20 minutes.

Such a freak out! So glad that Mum was with me, and that Isla was at home, I don't know that I would have coped if it happened to me on my own!

2007-11-23T22:20:00.000+11:00

At least I'll never have tonsillitis again...

2007-11-22T13:24:00.001+11:00

Had my tonsils out on Wednesday, came home last night.

Feeling pretty ordinary today, mouth full of gunk, swallowing hurts - painting a pretty picture isn't it?

Thanks to everyone for their well wishes and messages, means lots!

BIG thanks to Auntie Kate and Janine for looking after Isla while I've been unable - means a lot :)

Stll no BFP

2007-11-20T13:25:00.001+11:00

Update...

Still no progress with trying to conceive.

Ian's had his SA, the results aren't back yet. I've had two lots of blood tests so far with more to come. One lot was just to check for deficiencies etc, the second lot were to see if I've ovulated and to check hormone levels.

Still another 2ish weeks until I see the specialist again, although his office called on Tuesday to say that I have no rubella immunity, so I need to be vaccinated again, then wait another 4 weeks to continue TTC, which is odd, last time I had the injection (Isla was 3 days old) I was told not to conceive for 3 months, so I may have to find some more info or just err on the caution and wait the 3 months.

Still have 2 more ultrasounds to go, just waiting for AF to show up before I can be booked in for those.

It's a bit overwhelming. We started actively TTC some 15 months ago and each month gets harder and harder. At times it feels like the whole world is pregnant (which I know isn't the case) and everyone is so keen to offer their advice.

The worst one is "Stop thinking about it and it will happen" it makes me mad. It's also shitting me to hear people's stories changing, "Oh it took us X amount of months to conceive XYZ" when I know that it didn't...I guess for some it's a competition, but it's one I'd like to no longer be a part of.

* * * * * * * * * * * * * * * * * * *

Saw the Ob again today, all my blood tests came back normal - all hormone levels are fine, kidneys and liver doing what they should be. He said not to have the Rubella booster because I'm obviously one of those people that it has no effect on. My levels are down to 23, which is lower than when I was pregnant with Isla, they were 27 then (weird considering I've had a booster since!).

Ian's sperm count was through the roof and all normal little swimmers which is reassuring, he was stressing about it a little. So, the possibilities are:

a) I'm not ovulating (which the dr has partially dismissed - his theory is that erratic cycles indicate that I am ovulating, just not at a particular time) and will probably have to start on fertility drugs (Clomid) to make me ovulate.

b) There's a blockage in the fallopian tubes - need a TPA to see whether that's the case (will have to be next cycle though as I didn't want to have this procedure then have my tonsils out)

c) The lesion on my right ovary is causing the infertility - they still don't quite know what it is, another ultrasound should be enough to find out though..

d) unexplained infertility.

*sigh*

A-Z of all things Isla

2007-11-18T13:27:00.001+11:00

A is for arriba! "Arriba up, abajo down" Isla's favourite Spanish song.

B is for bubbles - Isla will often spend hours blowing bubbles, chasing bubbles, drawing bubbles. There's something so wonderful about watching children play with bubbles, to see the genuine intrigue and happiness is amazing.

C is for Chocolate - it seems to be a bit of a vice for Isla (she's so much like her Mummy sometimes *wub*) Freddo frogs are a big hit around here, although she's quite partial to good old Top Deck too :)

D is for Dora - Isla's favourite show. Thanks to Dora, Isla speaks in Spanish quite fluently and insisted on counting meat in the supermarket in Spanish - much to our surprise. "Te quiero mucho little Isla" xx.

A trip down memory lane

2007-11-18T13:26:00.001+11:00

Last weekend was very special indeed. To celebrate what would have been my "Papa's" 80th Birthday, Mum, my sister Kate, Ian, Isla and I made the drive to Bawley Point to scatter his ashes. Bawley Point is where we would holiday as children, either with Mum & Dad, or more often, with Nan and Pap. We had a simple set up down there, just a caravan and an annex, but it was the best place on Earth. I have so many wonderful memories from my childhood days spent at Racecourse Beach, like putting on concerts for the grown ups, playing totem tennis with my cousins or swimming for hours while Nan and Libby sat patiently on the beach and waited for us to finish.I'm sure that Papa would have loved the spot that we picked for him over in the rock pools, he has a wonderful view of the beach and the lighthouse at night. The rock pools were chosen because Pap loved to look in them for crabs for his fishing, and once we'd decided on where we'd scatter his ashes, the most wonderful warm breeze enveloped us like a sign from Pap that this was the place for him. When two little crabs scuttled across the rocks after he was scattered, we knew that he was happy.

It was quite surreal to go back to Bawley after a long time away. I was 13 or 14 the last time we went down there and almost everything has changed which is quite sad really. The place itself is still beautiful, we stayed in a Beachfront Villa and the view was great, but all the things I remembered about Bawley were changed or missing. There were no caravans or annexes, no tents or open land that were used as camping fields when we used to go down there. The tractor is missing from the playground, but the tunnel is still there. There's a big in-ground swimming pool, a gaming room, mini-golf and the old tennis courts are still there.

Isla had her first encounter with the surf not long after we arrived on Friday and loved it, although she was a little frightened at first. She squealed and laughed the entire time, it was such a beautiful moment to watch. We built some pretty impressive sandcastles then returned to the Villa to feed some ducks before venturing over to the playground while we waited for Ian to arrive. That night we sat outside and listened to the crashing of the waves and watched a little family of possums running around alongside the Villa, who were tame enough to feed by hand.

Saturday we went over to South Beach (or Shelley Beach as it's formally known) and it was picturesque. The aqua water lapping genlty on the sandy shore was even more beautiful than I had remembered. Isla was keen to get back into the surf, if only up to her knees! She once again had a wonderful time splashing about, alternating between holding my hand and Nana's. Ian and I attempted to take her out a little further, much to her disgust, and she was promptly heard crying "Nana, save me!". We built more sandcastles, collected shells and pebbles then went back to the Villa for lunch and a long relaxing sleep. Later that afternoon we went back to the playground where Isla had an almighty fall off the swing (see action shot!). She let go mid air and landed on her head, the rest of her body collapsing on top of her like a rag doll. I was certain that she had broken something, but after a few tears she was back on the slippery dip, but not too interested in the swing anymore.

Sunday, Ian left early to beat the traffic in time to have some time on his own at home, so we went around to Kioloa for a swim. Kioloa hasn't changed at all the boat ramp and the general store seem unaltered which is nice. We didn't explore the rockpools around the boat ramp like we used to when Nan and Pap took us down there, so unfortunately there were no stingray sightings on this trip. We only managed to stay there for about half an hour because the heat was so intense - all of us were covered in sunscreen and we still went pink! The walk back to the car lasted almost as long as the stay at the beach, with Isla insisting on picking up numerous pebbles and shells and looking for pippi's.

It was a great weekend, I'm so greatful to Mum for taking us down there, it really was what the doctor ordered!