tag:blogger.com,1999:blog-75212312224688014132024-03-06T02:13:49.139+11:00give a girl the right shoes and she can conquer the world.Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.comBlogger179125tag:blogger.com,1999:blog-7521231222468801413.post-44234656118226126922011-10-22T10:14:00.002+11:002011-10-22T10:14:32.492+11:00Almost a year...I have neglected Isla's blog for so long. <br />
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My sweet little princess is almost 7. She's now lost 5 teeth, and looks completely grown up. This photo was taken yesterday afternoon.<br />
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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.<br />
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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. <br />
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjq8yZji55vhVe9jZvcnUqGh81wjBV66cRI9NjiJK10LeacrlCC42k-YDvFk_64-Jzw27jFfjRJweg1fi3H9_74dBU2UvUBjZAL3bG2ADrPKzGYheJ8XIELk5JNPOf4-9dMFlHkXcieMuw/s1600/002.PNG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjq8yZji55vhVe9jZvcnUqGh81wjBV66cRI9NjiJK10LeacrlCC42k-YDvFk_64-Jzw27jFfjRJweg1fi3H9_74dBU2UvUBjZAL3bG2ADrPKzGYheJ8XIELk5JNPOf4-9dMFlHkXcieMuw/s320/002.PNG" width="213" /></a></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com6tag:blogger.com,1999:blog-7521231222468801413.post-30010116069550225482010-11-03T20:02:00.002+11:002010-11-03T20:13:35.723+11:00Update!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwIUulQFVbpKyUuXzGxDY0HICNd27vuLQ7k1SC8uy_gcj9C4WOrNZfy69wzbbm0kgmbDxiXCvA4l24iPGL9pi_rTugvj3M6bIQ6O1lPvfJhDDXaSX0fQlx1QADWzB606U-zb-o27g3Ukz-/s1600/_MG_1362.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwIUulQFVbpKyUuXzGxDY0HICNd27vuLQ7k1SC8uy_gcj9C4WOrNZfy69wzbbm0kgmbDxiXCvA4l24iPGL9pi_rTugvj3M6bIQ6O1lPvfJhDDXaSX0fQlx1QADWzB606U-zb-o27g3Ukz-/s320/_MG_1362.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5535247006523813922" /></a><br />Was it really July when I last posted on here?<div><br /></div><div>Poor Isla.</div><div><br /></div><div>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}.</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>Turned out to be nothing to do with a spider, but an infected throat. Little poppet is aok now.</div><div><br /></div><div>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!</div><div><br /></div><div>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! </div><div><br /></div><div>I think that's everything I've neglected to update the blog-world with...</div><div><br /></div><div>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!</div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4tag:blogger.com,1999:blog-7521231222468801413.post-82211817459273586452010-07-19T14:33:00.002+10:002010-07-19T14:49:00.056+10:00It's been forever since I posted.<div><br /></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Isla</span> had <span class="blsp-spelling-error" id="SPELLING_ERROR_1">botox</span> on the 7<span class="blsp-spelling-error" id="SPELLING_ERROR_2">th</span> of June and was so so brave. The anaesthetist was running late and <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Isla</span> was the 5<span class="blsp-spelling-error" id="SPELLING_ERROR_4">th</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_5">nauseas</span> 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.</div><div><br /></div><div><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Isla</span> 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.</div><div><br /></div><div>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.</div><div><br /></div><div>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!!! </div><div><br /></div><div>The most exciting part of this is that Isla doesn't need to be in plasters when she goes back to school tomorrow. Awesome.</div><div><br /></div><div>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...</div><div><br /></div><div>What else?</div><div><br /></div><div>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!</div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div><br /></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4tag:blogger.com,1999:blog-7521231222468801413.post-2565304509976298652010-05-25T21:59:00.006+10:002010-05-26T09:17:47.581+10:00Poo talk, funding denial and wheelchairs. What a day.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWR0mK5jc_gCqqo5-yulVWva50gK2xmwi4MYt9WSCoYCV22-KG6vMHSpzKiPw6IunLGakm6id0aBr7Hi-aO559wBwmt_Fgz3dtFMi5KQfj1g0qzwH38RIInJj0irBUqvPacYM6Sp_zo5vU/s1600/islamay.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 229px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWR0mK5jc_gCqqo5-yulVWva50gK2xmwi4MYt9WSCoYCV22-KG6vMHSpzKiPw6IunLGakm6id0aBr7Hi-aO559wBwmt_Fgz3dtFMi5KQfj1g0qzwH38RIInJj0irBUqvPacYM6Sp_zo5vU/s320/islamay.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5475181084467503490" /></a><br />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.<div><br /></div><div>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? </div><div><br /></div><div>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.</div><div><br /></div><div>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? </div><div><br /></div><div>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.</div><div><br /></div><div>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}.</div><div><br /></div><div>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.</div><div><br /></div><div>I digress.</div><div><br /></div><div>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}.</div><div><br /></div><div>I gasp.</div><div><br /></div><div>I wasn't ready for it.</div><div><br /></div><div>I suggest perhaps an "old lady walking frame", he nods. I suggest elbow crutches, he nods.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>What to do now?????</div><div><br /></div><div>Two weeks til Botox. Wish us luck.</div><div><br /></div><div>PS Here's Isla in her new 'Helpers' ready for school - complete with flashing shoes to help her get that all important heel-strike ;)</div><div><br /><div><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLkVEeNXcDgELbccxe82s2WdKYd2IBQcfV6BWpDzPZDmNqn1X335IElT1i0MUIqzguXt6kQGT2ONbGp3LcM0Y-qkKN7p6xtSnDVwDhR0czLwPtOvp9vAtYJpHlZ_alA6mYNrs9oG7YAzZJ/s320/_MG_0342.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5475185036001454050" /></div><div><br /></div></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com6tag:blogger.com,1999:blog-7521231222468801413.post-28100431741146401022010-04-29T12:20:00.003+10:002010-04-29T19:40:29.351+10:00"The kids want to know......why Isla has wobbly legs".<div><br /></div><div>This is how my walk to school went this morning.</div><div><br /></div><div>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.</div><div><br /></div><div>"She has Cerebral Palsy" I replied.</div><div><br /></div><div>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?".</div><div><br /></div><div>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?</div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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 ♥</div><div><br /></div><div>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 ♥ </div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com7tag:blogger.com,1999:blog-7521231222468801413.post-34008367265420846612010-04-26T19:40:00.003+10:002010-04-26T19:57:55.963+10:00Squeaky wheel gets the oil.Back in December 2009 I got fed up with the lack of services etc available to Isla.<div><br /></div><div>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.</div><div><br /></div><div>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}.</div><div><br /></div><div>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.</div><div><br /></div><div>So imagine my surprise when I receive an email from a DADHC <i><b>Intake</b></i> Officer who says she's been trying to contact me. Yes, an INTAKE officer.</div><div><br /></div><div>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*. </div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>Who knows?</div><div><br /></div><div>Either way, it'll be interesting to see what happens from here.</div><div><blockquote></blockquote><span class="Apple-style-span" style="font-family: Tahoma, Verdana, Arial, sans-serif; font-size: 13px; color: rgb(68, 68, 68); "><blockquote>Dear Ms Roxon,<div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>All these things and we're told she's not disabled enough.</div><div><br /></div><div>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 style="font-style: italic; ">I</i> have to lift her for all the above mentioned activities. <i style="font-style: italic; ">I</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 <i style="font-style: italic; ">my</i> life, not just hers.</div><div><br /></div><div>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. </div><div><br /></div><div>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.</div><div><br /></div><div>We're stuck. No one seems to want to help us. We've slipped through the cracks and no one seems to care. </div><div><br /></div><div>Please help. Please point me in the direction of SOMEONE that can help me.</div><div><br /></div><div>Allison Farr</div><div><br /></div><div><blockquote></blockquote><br /></div></blockquote><div></div></span></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com8tag:blogger.com,1999:blog-7521231222468801413.post-45206193070781483362010-04-21T22:28:00.003+10:002010-04-21T22:51:38.174+10:00Hmmm.So, the Spastic Centre called me today, and asked me if Isla was going to go to the Gym group. <div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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".</div><div><br /></div><div>Seriously.</div><div><br /></div><div>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.</div><div><br /></div><div>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?</div><div><br /></div><div>I know their resources are stretched. I know they prioritise their services for those who need them most, but we've been <i>dealing</i> 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...</div><div><br /></div><div>Annoyed.</div><div><br /></div><div>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?</div><div><br /></div><div>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...</div><div><br /></div><div>I just wish that she was a priority.</div><div><br /></div><div><br /></div><div><br /></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com8tag:blogger.com,1999:blog-7521231222468801413.post-14893310487140366002010-04-14T13:47:00.001+10:002010-04-14T16:22:07.284+10:00smile.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0ztATu5uOB7iYxEb1YHs7cpn2e5D5mMV91JmWkS1lPhcLpKpkPyrva8My2-1OXImdkA4j9IFA0Wy4dZJJL1VUCzEHZhyphenhyphenMM71MoYk2DzGBkezqJkNX7t_cgjBpuf09FOHvDQSqvEuROTRF/s1600/islapeek+copy.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0ztATu5uOB7iYxEb1YHs7cpn2e5D5mMV91JmWkS1lPhcLpKpkPyrva8My2-1OXImdkA4j9IFA0Wy4dZJJL1VUCzEHZhyphenhyphenMM71MoYk2DzGBkezqJkNX7t_cgjBpuf09FOHvDQSqvEuROTRF/s320/islapeek+copy.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5459874363470627954" /></a><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg4LDTvMnOjG6Fi8I8WRZ7orteO3vAp5jUtat2cLhFKQwBaBhTpdKcaedqrhO4JCSV-7tOSaFUy9AhU7T5V-LVIGo8PGw5Z4EYaRJrMvAG6twTAFSoIrFkIMpb0ksJWn81DeEO3NTpigGY/s320/islapeek2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5459837237374117954" />Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4tag:blogger.com,1999:blog-7521231222468801413.post-47152662573276937162010-03-27T16:01:00.003+11:002010-03-27T16:42:00.923+11:00Isla<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6xPscBWaJC4q2wHmmlGZA0QLgW7Tc-vHqQiqw4A8ZxYcEMqvRoZzgDWPoqKonrlcGouTg8rWmWHtf0pTilMhmlx279sFspxVXqG9ESVtj2sZcIPPOcYtdBZiUOPJM3aLs4nEA6q0-KHt6/s1600/isla.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6xPscBWaJC4q2wHmmlGZA0QLgW7Tc-vHqQiqw4A8ZxYcEMqvRoZzgDWPoqKonrlcGouTg8rWmWHtf0pTilMhmlx279sFspxVXqG9ESVtj2sZcIPPOcYtdBZiUOPJM3aLs4nEA6q0-KHt6/s320/isla.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5453183506714867106" /></a><br />It's been so long since I've updated Isla's blog.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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!</div><div><br /></div><div>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 :(</div><div><br /></div><div>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.</div><div><br /></div><div>I'm sure I have more to update on, but my mind is a bit of a blur right now! </div><div><br /></div><div><br /></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4tag:blogger.com,1999:blog-7521231222468801413.post-86025235228216941112010-02-08T12:32:00.002+11:002010-02-08T12:46:36.754+11:00School UpdateIsla was so excited to have 2 "days off" school. Bless her little socks.<div><br /></div><div>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.</div><div><br /></div><div>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!}.</div><div><br /></div><div>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!}.</div><div><br /></div><div>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!</div><div><br /></div><div>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!</div><div><br /></div><div>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!</div><div><br /></div><div>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.</div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com2tag:blogger.com,1999:blog-7521231222468801413.post-71635310939664341382010-02-05T22:12:00.004+11:002010-02-05T22:43:49.795+11:00A whole new world.<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9B_ZqGw4iBczg51gjIbkTRZezNyVjsvx_x36HQ0q7UxF1soD7KjHXViezGiYvBCnMLOq6SnutrsWCYQmDglQSmpfSvUMVMGQwOhA_Yfj66FBzzTMUGk4z1DCkaGZimO9fC6hyphenhyphennQ1FF8mY/s1600-h/_MG_8866.jpg"><img style="cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9B_ZqGw4iBczg51gjIbkTRZezNyVjsvx_x36HQ0q7UxF1soD7KjHXViezGiYvBCnMLOq6SnutrsWCYQmDglQSmpfSvUMVMGQwOhA_Yfj66FBzzTMUGk4z1DCkaGZimO9fC6hyphenhyphennQ1FF8mY/s320/_MG_8866.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5434721915252017842" /></a><br /><span class="Apple-style-span" style=" color: rgb(68, 68, 68); font-family:Tahoma, Verdana, Arial, sans-serif;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style=" ;font-size:small;">Isla started school on Wednesday.</span></span></span><div><span class="Apple-style-span" style="font-family:'trebuchet ms', Verdana, Arial, sans-serif;color:#444444;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style=" color: rgb(68, 68, 68); font-family:Tahoma, Verdana, Arial, sans-serif;font-size:13px;"><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;">She'd been up since 6am...made me put her hair in long plaits last night so it's ready for the big day.</span></span><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;">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!</span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style=" ;font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', Verdana, Arial, sans-serif;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style=" ;font-size:small;">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.</span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style="font-size:small;"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsmCQrcZj8S-uT_HWIM5qMAfbG_89_L2Ssae4OdnIe_zwwAU-3jFZ-X8CwcEyuzyg7LdRr3L0n-XzH04lK5h4JwWWo5JfWpKe-kSOBklmKxQRHmtFqVPawNgFNVAJPg0wTdsc80U3Ctnnv/s320/IMG_4671.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5434721948348946450" /></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms';"><span class="Apple-style-span" style=" ;font-size:small;">She's was so excited.</span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', Verdana, Arial, sans-serif;"><span class="Apple-style-span" style="font-size:small;"><br /></span></span></div><div><span class="Apple-style-span" style="font-family:'trebuchet ms', Verdana, Arial, sans-serif;"><span class="Apple-style-span" style=" ;font-family:Tahoma, Verdana, Arial, sans-serif;"><span class="Apple-style-span" style="font-size:small;">When it came time for her to leave me and Harper and join her class she didn't cry at all. </span><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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! </span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">A school girl.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">I'm so proud of her. I miss her so much during the day. The house seems so empty. Harper searches for her constantly.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">I think this is my favourite photo so far. You can see he<span class="Apple-style-span" style=" ;font-size:-webkit-xxx-large;"><span class="Apple-style-span" style=" ;font-size:small;">r in the doorway. She's just spotted us. Look at that beautiful expression, mouth wide open with excitement. Bless.</span></span></span></div><div><span class="Apple-style-span" style=" ;font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisnLIfh9-y0RKe1Fa06Ra9oasxgw2433NwFw3gZsXa44EhtXnQ67eJ0hq66fw9xORpnLGyr4xkbMdpnUwG9mjXG3cMbrdCrNwqIe2UAfm_YbhSqUhZahi8AG6YjTzmoIrvV-RQGGBJ0rbV/s320/_MG_8871.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5434721925057543010" /> <span class="Apple-style-span" style=" ;font-size:-webkit-xxx-large;"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi98T5dQZGS0x1Sfq3lWiYJnZesgnEq-KTxjTsMi2frAsoNRvvCeFdKAZRzHVu9fDrKwN1qEZYppFPPZY78McN5Bahs4JbFayRKfBGc4qt8-xCevHxZn1anGdPN1j3S7t2jFnbyUVnqIg0O/s320/_MG_8878.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5434721932890232914" /></span></span></div><div><span class="Apple-style-span" style=" ;font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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. </span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">When I picked her up that afternoon she said nobody w<span class="Apple-style-span" style=" ;font-size:-webkit-xxx-large;"><span class="Apple-style-span" style=" ;font-size:small;">anted 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.</span></span></span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">My poor little girl.</span></div><div><span class="Apple-style-span" style=" ;font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">So, I spent the remainder of Thursday in tears. So did Ian.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">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. </span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style=" ;font-size:small;">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.</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">I couldn't agree more</span></div><div><span class="Apple-style-span" style="font-size:small;"><br /></span></div><div><span class="Apple-style-span" style="font-size:small;">.<span class="Apple-style-span" style=" ;font-size:-webkit-xxx-large;"><img style="cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgycXYABlmvGIZIA0jehHHLXviHKbNqDVTw7OSv3rgTnzoyYtgeEbWeamdvby3RHd8Bi-cfmeJE_4njYWwMTmBilbfEOUBbbApa5cav22zG7oMj3uSI0leFCEcuK36FRL5GmFhgibVvcuDa/s320/_MG_8889.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5434721935645735778" /></span></span></div></span></span></div></span></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com5tag:blogger.com,1999:blog-7521231222468801413.post-45731214202250668152010-01-21T23:42:00.002+11:002010-01-21T23:52:57.179+11:00Botox follow up.My little possum went for her Botox follow up appointment with Dr L today.<div><br /></div><div>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.</div><div><br /></div><div>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.</div><div><br /></div><div>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}.</div><div><br /></div><div>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.</div><div><br /></div><div>I hope it's just the botox.</div><div><br /></div><div>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!}. </div><div><br /></div><div>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.</div><div><br /></div><div><br /></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com5tag:blogger.com,1999:blog-7521231222468801413.post-2095749531746986252010-01-08T22:23:00.004+11:002010-01-08T22:44:10.423+11:00Five.Happy 5th Birthday Isla.<div><br /></div><div>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".</div><div><br /></div><div>I am so proud of the little girl you've grown into, so polite and thoughtful. So smart and beautiful. I love you so.</div><div><br /></div><div>5 years ago...</div><div><img style="cursor:pointer; cursor:hand;width: 202px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8Qe7In7wsD-j51eThdGKfzyzxPqtMjv58OB8U2UHZ6ngHnmtYjvJELUzEdjaEtw-7jGHf2bfV8LiE-QYOWn77PrDcdT7K0p44Oi5KkuW3EBMsnN9f9aSc1PcpQd3BLxVvs9BJexOnJT3w/s320/Isla+3+days+old.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5424330249589514546" /></div><div><br /></div><div>Now...</div><div><img style="cursor:pointer; cursor:hand;width: 229px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7o0fE19wpL051F74lHD2wzgPA8PeYShgfXaGn7REZ2rl2uMQHHIF-hjCglpjztV5cw-NzB6eJ_lQQP4Kqjecwe7qSHgfB9qIPFuVAJCy6j5DptaowSRtfs0PMO1R2OYcxFQgyHdksc7tJ/s320/bday+girl.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5424332371643031618" /></div><div><br /></div><div>Sunday is your much longed for McDonalds party. You have been counting down for this for weeks. </div><div><br /></div><div>The world is yours for the taking, my little duck. I know you're destined for great things. You amaze me every single day.</div><div><br /></div><div>We took Isla to the Botanic Gardens and met up with Bron from <a href="http://coopsnpeps.blogspot.com/">Big Brother & Little Sister</a>, and Di from <a href="http://n0thingbuteverything.wordpress.com/">N0thing but Everything</a>. Two beautiful ladies, with their gorgeous children. Such a great way for Isla to celebrate the big 5.</div><div><br /></div><div>She was spoilt rotten, with more spoiling to come on Sunday. </div><div><br /></div><div>Five years goes by in the blink of an eye.</div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com6tag:blogger.com,1999:blog-7521231222468801413.post-78756776926293191092010-01-03T22:35:00.003+11:002010-01-03T22:37:47.798+11:00Oh how they grow...<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC_-uBLGM-T23DGdOWcJ13Rlrx2xT4tYW26q0_BgfII_8BwE9hp9-13sPx96DjUkT4q7uPhmhXDr61SA4-lDZpc4MBKnbJKMvQWojWCSd8NtzMJrVoGxioNzftnkS5fa3q1d5k40IlnUb4/s1600-h/IMG_4399.jpg"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC_-uBLGM-T23DGdOWcJ13Rlrx2xT4tYW26q0_BgfII_8BwE9hp9-13sPx96DjUkT4q7uPhmhXDr61SA4-lDZpc4MBKnbJKMvQWojWCSd8NtzMJrVoGxioNzftnkS5fa3q1d5k40IlnUb4/s320/IMG_4399.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5422476316282694386" /></a><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC_-uBLGM-T23DGdOWcJ13Rlrx2xT4tYW26q0_BgfII_8BwE9hp9-13sPx96DjUkT4q7uPhmhXDr61SA4-lDZpc4MBKnbJKMvQWojWCSd8NtzMJrVoGxioNzftnkS5fa3q1d5k40IlnUb4/s1600-h/IMG_4399.jpg"></a><br />This is Isla modelling her new school uniform.<div><br /></div><div>She starts school in a month...today.</div><div><br /></div><div>She'll be 5 in 3 sleeps.</div><div><br /></div><div>Where has the time gone. My sweet little girl is all.grown.up.</div></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com3tag:blogger.com,1999:blog-7521231222468801413.post-78592345740657952922009-12-29T11:50:00.001+11:002009-12-29T12:03:39.429+11:00<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UstaNEbW13jM1TSK32SY64FCJsXiFfdslZRXVVunBC4J9vz2Qft3_NHJvWoODZ0Vnpvg1jocXENwrfAak2gZhhCM9FKQEi5YsmEJxpmlZJR1oou8ECQYGJiCHv1z-4H2ZDo6Nua31E3m/s1600-h/_MG_8107.JPG"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_UstaNEbW13jM1TSK32SY64FCJsXiFfdslZRXVVunBC4J9vz2Qft3_NHJvWoODZ0Vnpvg1jocXENwrfAak2gZhhCM9FKQEi5YsmEJxpmlZJR1oou8ECQYGJiCHv1z-4H2ZDo6Nua31E3m/s320/_MG_8107.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5420455728842572978" /></a>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com2tag:blogger.com,1999:blog-7521231222468801413.post-17500231983874348992009-12-18T13:20:00.005+11:002009-12-18T13:26:34.441+11:00Two BIG things<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi776-w8zOmKGYGaYPNJ8vJ767bzvmJrrcmXjhEE2T0I9BuWAA-2gP8Du22mNthSEaPP1zXrthc-D7Q4yPJlzslHx7la_qwb8JOiPVZxPianGFLcavCApWaTGY6e5koUHgTXJSeUgCpcGsx/s1600-h/_MG_8064.jpg"><img style="cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi776-w8zOmKGYGaYPNJ8vJ767bzvmJrrcmXjhEE2T0I9BuWAA-2gP8Du22mNthSEaPP1zXrthc-D7Q4yPJlzslHx7la_qwb8JOiPVZxPianGFLcavCApWaTGY6e5koUHgTXJSeUgCpcGsx/s320/_MG_8064.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5416395879927551730" /></a><br />Two big things have happened this week.<div><br /></div><div>1. Miss Isla has graduated Kindy (!!). Oh so cute!</div><div>AND</div><div>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!!!!!!</div><div><br /></div><div>How awesome!</div><div><br /></div><div>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!</div><div><br /></div><div>I can't explain just how much of a big deal this is.</div><div><br /></div><div>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!</div><div><br /></div><div>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.</div><div><br /></div><div>Just think of all the pretty shoes we can buy!</div><div><br /></div><div>Oh Happy Day!</div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com7tag:blogger.com,1999:blog-7521231222468801413.post-3720255378552988472009-12-12T22:05:00.003+11:002009-12-12T22:19:47.615+11:00Kindy Xmas Party<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfTu85t2_IjAfPCTGPp4bjbtGmZ18rCh-Nugx0lAO2ViWjGqAnK-vgTSdFLRqOsLy2yiKjY3do6O90wKrvIf1IS6fca3xkxEiy-Wat6lQGy-JHeXLZC_JZbXtQoSN5r6C0LMRMhdM12Exz/s1600-h/_MG_7929+10-22-48+2.jpg"><img style="cursor:pointer; cursor:hand;width: 214px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfTu85t2_IjAfPCTGPp4bjbtGmZ18rCh-Nugx0lAO2ViWjGqAnK-vgTSdFLRqOsLy2yiKjY3do6O90wKrvIf1IS6fca3xkxEiy-Wat6lQGy-JHeXLZC_JZbXtQoSN5r6C0LMRMhdM12Exz/s320/_MG_7929+10-22-48+2.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5414307675460593618" /></a><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfTu85t2_IjAfPCTGPp4bjbtGmZ18rCh-Nugx0lAO2ViWjGqAnK-vgTSdFLRqOsLy2yiKjY3do6O90wKrvIf1IS6fca3xkxEiy-Wat6lQGy-JHeXLZC_JZbXtQoSN5r6C0LMRMhdM12Exz/s1600-h/_MG_7929+10-22-48+2.jpg"></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-l4ihf5KT6KSOmHjyJM_uZWTq1b4tNN4d_hFuaexgvGqu6aXfFI7UErIra9_xSkjlkMNqg35qg4I3998i3ITDT9kCx9PLFoV84bLSrLpZDetjhjOZiIHQ7zl98W6EieTEYJLhOUjKf4OO/s1600-h/_MG_7899.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-l4ihf5KT6KSOmHjyJM_uZWTq1b4tNN4d_hFuaexgvGqu6aXfFI7UErIra9_xSkjlkMNqg35qg4I3998i3ITDT9kCx9PLFoV84bLSrLpZDetjhjOZiIHQ7zl98W6EieTEYJLhOUjKf4OO/s320/_MG_7899.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5414307670787906562" /></a></div><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-l4ihf5KT6KSOmHjyJM_uZWTq1b4tNN4d_hFuaexgvGqu6aXfFI7UErIra9_xSkjlkMNqg35qg4I3998i3ITDT9kCx9PLFoV84bLSrLpZDetjhjOZiIHQ7zl98W6EieTEYJLhOUjKf4OO/s1600-h/_MG_7899.jpg"></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5UWzcDx_1VPyN3Kly1C1I7HA39MTUtuLuuen8CpK91Rd7eRc0MGLa_kFAHYzgKBmIz4llY2acZspDCxOz0VFXTcTpUxv9l-DNy4uvpG8HBuNGPz2eCNKOOEazB5xTOuNlc5mKhKvQVyc-/s1600-h/_MG_7890.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 256px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5UWzcDx_1VPyN3Kly1C1I7HA39MTUtuLuuen8CpK91Rd7eRc0MGLa_kFAHYzgKBmIz4llY2acZspDCxOz0VFXTcTpUxv9l-DNy4uvpG8HBuNGPz2eCNKOOEazB5xTOuNlc5mKhKvQVyc-/s320/_MG_7890.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5414305195027166530" /></a><div><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5UWzcDx_1VPyN3Kly1C1I7HA39MTUtuLuuen8CpK91Rd7eRc0MGLa_kFAHYzgKBmIz4llY2acZspDCxOz0VFXTcTpUxv9l-DNy4uvpG8HBuNGPz2eCNKOOEazB5xTOuNlc5mKhKvQVyc-/s1600-h/_MG_7890.jpg"></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAOXdNVcRooEXxS2qiGCsi5farLS5-7QKSjJtwOlhzbl1grbLtu3d2F5xHNDWMEWq3m8jGB4QA-mB_72A6lFoQ5WFPmiB1IN-iRElILK0TKsAkLtAv__Lg7qOxziErJe30uVRJTUf0MKwm/s1600-h/_MG_7941+10-22-48.JPG"><img style="cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAOXdNVcRooEXxS2qiGCsi5farLS5-7QKSjJtwOlhzbl1grbLtu3d2F5xHNDWMEWq3m8jGB4QA-mB_72A6lFoQ5WFPmiB1IN-iRElILK0TKsAkLtAv__Lg7qOxziErJe30uVRJTUf0MKwm/s320/_MG_7941+10-22-48.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5414305186728127442" /></a><br />I can't believe little Isla's time at Kindy is almost over. She has her graduation on Tuesday night. <div><br /></div><div>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!</div></div></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com1tag:blogger.com,1999:blog-7521231222468801413.post-68320667174162708392009-11-30T20:58:00.005+11:002009-11-30T21:34:00.293+11:00I could kiss the inventor of General Anaesthetic!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxwaEflbyvPTVXphf8QK6tSrekGEz88_c69Ad3A__imDzVUxKQOxiJtGLJsgwnesKn2UN8DOYEfhoF6_jNZfDMXz88I3c0vJMSIXk56G9BvOBiR06pS4gUlaYAZS45_soJMVaFJLDGSvoZ/s1600/IMG_4389.JPG" style="text-decoration: none;"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxwaEflbyvPTVXphf8QK6tSrekGEz88_c69Ad3A__imDzVUxKQOxiJtGLJsgwnesKn2UN8DOYEfhoF6_jNZfDMXz88I3c0vJMSIXk56G9BvOBiR06pS4gUlaYAZS45_soJMVaFJLDGSvoZ/s320/IMG_4389.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5409842417148940082" /></a><div style="text-align: center;"><br /></div>Botox day today.<div><br /></div><div>I was filled with fear and trepidation of what lay ahead, if <a href="http://islasjourney.blogspot.com/2009/05/botox.html">last time</a> was anything to go by.</div><div><br /></div><div>To my utter surprise, everything today was easy and straight-forward.</div><div style="text-align: center;"><br /></div><div>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.</div><div style="text-align: center;"><br /></div><div>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.</div><div style="text-align: center;"><br /></div><div>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).</div><div><br /></div><div>I digress... </div><div style="text-align: center;"><br /></div><div>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!</div><div style="text-align: center;"><br /></div><div>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. </div><div><br /></div><div>We met the Anaesthetist, we saw Dr L, we had the usual obs done. </div><div style="text-align: center;"><br /></div><div>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!</div><div><br /></div><div>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. </div><div style="text-align: center;"><br /></div><div>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!</div><div><br /></div><div>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.</div><div style="text-align: center;"><br /></div><div>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.</div><div><br /></div><div>Ian and I couldn't believe it.</div><div><br /></div><div>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! </div><div style="text-align: center;"><br /></div><div>Then The <a href="http://www.humourfoundation.com.au/">Clown Doctors</a> 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!)</div><div><br /></div><div><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-Bkg0AQX9l75yZkA4eW98BVyWyfl8UXUEmHk5cMKjVYzOX_IhhvgvgCULV_jEa422C5P9DHmEa70zrXBSIOISM8CK9Yy1W0gKqx_DBmkAyhLEq0H62jm5vKLUv0imo4eKFt-fNzA_7jH1/s320/IMG_4390.JPG" border="0" alt="" id="BLOGGER_PHOTO_ID_5409842413896824882" /></div><div>Isla didn't want to leave!</div><div><br /></div><div>So, we have a review on the 21st of January. </div><div><br /></div><div>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. </div><div><br /></div><div>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! </div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com6tag:blogger.com,1999:blog-7521231222468801413.post-71276773543607643632009-11-17T19:49:00.002+11:002009-11-17T20:22:40.207+11:00Update, update, update.So very slack. <br /><br />I haven't been in here for ages, I've been so preoccupied with so much stuff.<br /><br />Isla is doing really well. Just this last week she seems to have grown up so much - it's insane.<br /><br />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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />We sat and listened to policies for what seemed to be an eternity before we could her chatter from the canteen behind us. <br /><br />There they all were, our little almost "big schoolers", enjoying recess at big school. <br /><br />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.<br /><br />It turned out to be wonderful.<br /><br />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.<br /><br />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. <br /><br />What a relief.<br /><br />What else has been happening?<br /><br />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.<br /><br />Isla refuses to have photo's taken, so unfortunately I have none to upload of her!Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com3tag:blogger.com,1999:blog-7521231222468801413.post-17253566395815083132009-09-06T10:43:00.004+10:002009-09-06T11:44:29.379+10:00<div><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 230px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5378164053383686866" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin28Iucj3iHobIcdCDP_UyI53UzPCWeTF2wvwfkKApEwHCEjJ9yZgqnMhWokTg5HRCeebfIfpplQ81A-rVdYRimXDj-SEe8iM92yLq9bnZ4l-2T1-dspV7S-olWcLVdCrdMP6XyW_w6tNP/s400/isla2.jpg" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie9h2MXPmEXT76VYcPYpHQJoYQ2RA9bsbh2ZOwqOmHrc1sPj_SUPcAsKyQ4JbBIgbxADvovun1d3363fWPhvNaqSVkuqspHJ9CYdcxTZ30vlGJYrQ8qCUv9b0E3CsZtWx-eNm0RVtYPqeg/s1600-h/isla.jpg"><img style="TEXT-ALIGN: center; MARGIN: 0px auto 10px; WIDTH: 400px; DISPLAY: block; HEIGHT: 170px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5378161092212378754" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie9h2MXPmEXT76VYcPYpHQJoYQ2RA9bsbh2ZOwqOmHrc1sPj_SUPcAsKyQ4JbBIgbxADvovun1d3363fWPhvNaqSVkuqspHJ9CYdcxTZ30vlGJYrQ8qCUv9b0E3CsZtWx-eNm0RVtYPqeg/s400/isla.jpg" /></a>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.<br /><br /><div></div></div>Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4tag:blogger.com,1999:blog-7521231222468801413.post-31551971092142702852009-08-13T14:40:00.003+10:002009-08-13T14:50:34.821+10:00Lots of news.We've been busy little bees around these parts lately.<br /><br />Here's the latest on Miss Isla.<br /><br />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.<br /><br />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 :(<br /><br />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 <a href="http://http//islasjourney.blogspot.com/2009/05/botox.html">last time</a>.<br /><br />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.<br /><br />What else.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Not much else happening though.<br /><br />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.<br /><br />I have some photo's but not on this computer. Will upload some tonight!Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com5tag:blogger.com,1999:blog-7521231222468801413.post-9468595846640276532009-07-28T11:18:00.003+10:002009-07-28T11:24:27.428+10:00Hello Attitude.Ugh.<br /><br />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.<br /><br />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.<br /><br />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!!!<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />We have a speech assessment next Monday. Should be interesting.Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com3tag:blogger.com,1999:blog-7521231222468801413.post-58653830580726218102009-07-04T10:01:00.003+10:002009-07-04T10:54:14.183+10:00Child Developmental Assessment Clinic Report.Remember we saw Dr B a few weeks <a href="http://islasjourney.blogspot.com/2009/06/assessment.html">back</a>? Here's the report (feel free to fast forward to the results).<br /><br />"<span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Isla</span></span> is referred by Dr F, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Paediatrician</span></span>, because she has Cerebral Palsy and will probably go to school in 2010 and this is a <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2"><span class="blsp-spelling-error" id="SPELLING_ERROR_2">developmental</span></span> assessment towards that. She attended an appointment with her <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">mother</span> Allison on <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">Friday</span> morning the 12<span class="blsp-spelling-error" id="SPELLING_ERROR_5"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">th</span></span> of June.<br /><br /><strong>CURRENT CONCERNS:</strong><br />There was some concern as to how her needs will be met in school. <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Isla</span> is considered to be thoughtful and a caring child who is <span class="blsp-spelling-error" id="SPELLING_ERROR_5">affectionate</span> towards the family and friends. She has good <span class="blsp-spelling-error" id="SPELLING_ERROR_6">communication</span> skills and a large vocabulary.<br /><br /><strong>HEALTH INFORMATION:</strong><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_7">Isla</span> was born at Liverpool Hospital five weeks early weighing 2.585kg. She had a head <span class="blsp-spelling-error" id="SPELLING_ERROR_8">circumference</span> of 34cm. She was born by emergency <span class="blsp-spelling-error" id="SPELLING_ERROR_9">caesarean</span> section. There was grade IV placenta <span class="blsp-spelling-error" id="SPELLING_ERROR_10">praevia</span> and there was <span class="blsp-spelling-error" id="SPELLING_ERROR_11">severeal</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_12">antepartum</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_13">haemorrhages</span> during the gestation. Her <span class="blsp-spelling-error" id="SPELLING_ERROR_14">Apgar</span> scores were good at birth 9 at 1 minute and 9 at 5 minutes. She was discharged home at 5 days.<br /><br />There were no neonatal seizures. There was some jaundice.<br /><br />She has had occasional viral illnesses. She has had suspected seizures though they are considered to be day-dreaming episodes. She has had <span class="blsp-spelling-error" id="SPELLING_ERROR_15">Botox</span> injections at the Sydney Children's Hospital. Her current diagnosis is Spastic <span class="blsp-spelling-error" id="SPELLING_ERROR_16">Diplegia</span>/<span class="blsp-spelling-error" id="SPELLING_ERROR_17">Quadriplegia</span>.<br /><br />She has had her vision and hearing tested and all is considered to be well though she has not had a recent hearing test.<br /><br /><strong><span class="blsp-spelling-corrected" id="SPELLING_ERROR_18">DEVELOPMENTAL</span> HISTORY:</strong><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_19">Isla</span> 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. <span class="blsp-spelling-error" id="SPELLING_ERROR_20">Isla</span> knows numbers, letters, colours and shapes.<br /><br /><strong>PLAY AND BEHAVIOUR:</strong><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_21">Isla</span> is generally very well behaved. She plays happily on her own and with others. She attends <span class="blsp-spelling-error" id="SPELLING_ERROR_22">Kindy</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_23">awkward</span>.<br /><br />Past assessment using the Bailey's Scale at 20 months by the CAT team at <span class="blsp-spelling-error" id="SPELLING_ERROR_24">Campbelltown</span> Hospital found that she had some motor <span class="blsp-spelling-corrected" id="SPELLING_ERROR_25">difficulties</span>.<br /><br /><strong>AGENCIES INVOLVED:</strong><br />Speech Pathologist, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_26">Physiotherapist</span>, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_27">Occupational</span> Therapist, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_28">Ophthalmologist</span> x2, Neurologist x2, The Spastic Centre.<br /><br /><strong><span class="blsp-spelling-corrected" id="SPELLING_ERROR_29">OBSERVATIONS</span> DURING GRIFFITHS ASSESSMENT:</strong><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_30">Isla</span> at 4yrs and 5 months (53 months) was presented with tasks from a test called the Griffiths Mental <span class="blsp-spelling-corrected" id="SPELLING_ERROR_31">Developmental</span> Scales Extended Revised (<span class="blsp-spelling-error" id="SPELLING_ERROR_32">GMDS</span>-ER) which assesses the mental development of young children (from Birth to 8 years, May 2004). <span class="blsp-spelling-corrected" id="SPELLING_ERROR_33">Standardised</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_34">sub scales</span>:<br /><br />A. <span class="blsp-spelling-error" id="SPELLING_ERROR_35">Locomotor</span> 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.<br /><br />B. Personal-Social Skills - This scale assesses the proficiency in the activities of daily living, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_36">independence</span> 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.<br /><br />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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_37">comprehension</span>, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_38">similarities</span> and differences.<br /><br />D. Eye-Hand <span class="blsp-spelling-corrected" id="SPELLING_ERROR_39">Coordination</span> 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.<br /><br />E. Performance Skills - This scale assesses the <span class="blsp-spelling-corrected" id="SPELLING_ERROR_40">manipulation</span> skills including the speed of working and precision. This includes building bridges and stairs, completion of <span class="blsp-spelling-corrected" id="SPELLING_ERROR_41">puzzles</span> and pattern making.<br /><br />F. Practical Reasoning Skills - This scale assesses the ability to solve practical problems, <span class="blsp-spelling-corrected" id="SPELLING_ERROR_42">understanding</span> of basic <span class="blsp-spelling-corrected" id="SPELLING_ERROR_43">mathematical</span> <span class="blsp-spelling-corrected" id="SPELLING_ERROR_44">concepts</span> and questions about moral and sequential issues. This includes counting and comparison of size, length and height.<br /><br /><strong>RESULTS:</strong><br /><span class="blsp-spelling-error" id="SPELLING_ERROR_45">Locomtor</span> Skills Age Equivalent<strong><em> Less than 24months</em><br /></strong>Personal-Social Skills Age Equivalent<strong><em> 40 months</em><br /></strong>Hearing and Speech Skills Age Equivalent<strong> 56 months<br /></strong>Eye and Hand <span class="blsp-spelling-corrected" id="SPELLING_ERROR_46">Coordination</span> Skills Age Equivalent<strong> <em>52 months</em></strong><br />Performance Skills Age Equivalent <strong><em>37 months</em><br /></strong>Practical Reasoning Skills Age Equivalent<em><strong> 50 months<br /><br />SUMMARY:<br /></strong></em><span class="blsp-spelling-error" id="SPELLING_ERROR_47">Isla</span> is a delightful child to assess. She has very good language and <span class="blsp-spelling-corrected" id="SPELLING_ERROR_48">communication</span> skills. She scores in the low average range <span class="blsp-spelling-corrected" id="SPELLING_ERROR_49">principally</span> because she has fine motor and gross motor <span class="blsp-spelling-corrected" id="SPELLING_ERROR_50">difficulties</span> (she has <span class="blsp-spelling-corrected" id="SPELLING_ERROR_51">difficulties</span> with motor planning). Isla is doing very well and will fit nicely to a mainstream school where her physical needs can be met.<br /><br />Because of this she requires a transition to school referral so that the family can investigate with the <span class="blsp-spelling-error" id="SPELLING_ERROR_53">DET</span> 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. <span class="blsp-spelling-error" id="SPELLING_ERROR_54">Isla</span> is noted to be able to walk about 100 metres before she becomes tired and so these things need to be taken into <span class="blsp-spelling-corrected" id="SPELLING_ERROR_55">consideration</span>. 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.Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com5tag:blogger.com,1999:blog-7521231222468801413.post-39704485074856970712009-06-30T08:51:00.002+10:002009-06-30T08:59:11.565+10:00Botox report.This is the letter that arrived after our review with Dr L, one month after Botox.<br /><br /><em>"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%.</em><br /><em></em><br /><em>Although it took a little while for Isla to wake up, she went home that day.</em><br /><em></em><br /><em>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.</em><br /><em></em><br /><em>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.</em><br /><em></em><br /><em>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.</em><br /><em></em><br /><em>She will be reviewed in 2 months time".</em><br /><em></em><br />Again, no idea what it all means, but will endeavour to find out today at Michaels.Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com3tag:blogger.com,1999:blog-7521231222468801413.post-47607007873608974892009-06-23T08:06:00.005+10:002009-06-23T09:23:18.703+10:00Plasters...again...again...We had physio for the first time since Botox yesterday.<br /><br />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.<br /><br />Happy Days.<br /><br />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.<br /><br />She's such a trooper, I can't remember how many times she's been in casts now, and she never complains.<br /><br />Pics to come soon.Ally {mtm}http://www.blogger.com/profile/06594986051582649211noreply@blogger.com4