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.

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.

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!

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.

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.

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.

Tuesday, June 26, 2007


Big day today! We took Poppy to the airport this morning. He's off to England and America for 2 months and Isla was fitted for new AFO's this afternoon as well!


Rob (the orthotist) couldn't believe how much she's grown since October! The AFO's she has now should fit her for another year but she's already busting out of them! Only 1 more week and we'll have a brand new pair - which means new shoes, I hope we can find "flashy shoes" in bigger sizes!


Casting went well. Isla didn't kick or pull which was what we were worried about. She cried a bit though, but once she was able to put one of her helpers and shoes back on she was fine while Brendon did the other cast.


Isla is such an entertainer these days, she has us in fits of laughter all day long. Her vocabulary is incredible, she has so many words and loves to sing and dance :o)


Isla is walking everywhere and it's amazing! Her walk is a little unconventional, she can't really go in a straight line, but it's so wonderful to watch. We've had to ditch the pram (Isla's choice not ours!) and she does her best to walk everywhere we go.


A few weeks ago we were part of a Paed training exam at C'town Hosptial. Isla and I went down for some "short exams" where some Paed's in training from Westmead and Sydney Children's Hospital. Over 2.5hours, Isla was seen by 4 different Paeds who had to determine what condition she had. All they were told was "Isla is 2.5yrs old. She was born at 35 weeks and has only just learnt to walk in the last month. Please assess"


It was really good to see the different ways Dr's worked, they all came to the same (and correct) conclusion but they all came to their answer differently, it was really interesting. One of the Dr's being assessed was amazing, and I wished I paid attention to where she was from because she had the best bedside manner - she was unreal, I wish there were more dr's like her!


Isla was weighed and measured on this day too - 10.2kgs fully dressed :o( And 79cms tall so she's in the lowest percentile for height and weight. It was strange to hear them say she was short because we get so many comments on how tall she is.

Wednesday, January 17, 2007


The last three days have been wonderful :)


Isla is progressing SO well, we're all thrilled with how she's doing developmentally.


So many words and sentences now, Dorothy, Kath, Hannah, Michael, Claire are the new favourite words! Isla has gone drawing crazy, and constantly asks for her "papey & draw" for paper & crayons! Too cute!


Isla managed to take 2 unaided steps on Monday and Tuesday night - it was absolutely amazing! Her standing is improving too, she's a lot more balanced than ever, I think it's partly the new shoes - they give her great stability and fit the orthotics perfectly! We're going to look for a basketball hoop for Isla, seems she only wants to stand/walk if there's a ball involved!


Still seeing Michael, our physio, he's very happy with her progress, he's hoping to have her on the treadmill next week! Would have been last week but it wasn't working. We're still going to OT too, but Isla has taken a disliking to Mel and does nothing but cry until she leaves the room - then cracks up! Not sure how much benefit it will be in all honesty. Mel said that it's really for her schooling days so that she has the co-ordination to do up buttons and use scissors etc - so I guess it is important to have that mirroring under control.


Botox Clinic is the 28th of March - very nervous leading up to this, I know she'll benefit a great deal from the injections, it's just having them done that's the hard part, but still there's lots of little ones much worse off than our little poppet, I guess you still have to count your blessings - right?


Nothing much else is happening around here at the moment. Ian is giving up smoking, so he's been going to bed around 8pm! The house is very quiet when the two of them are in dreamland!

Tuesday, November 14, 2006


So much has happened and I haven't had the chance to come in here and update.


We were so incredibly lucky to have a very special and beautiful person, Erin, organise a Charity Golf Day to raise funds for Isla. Erin is, without question, the most wonderful and selfless person on the face of this Earth. She put in so much hard work and so many hours which culminated in an amazing day, all for our little Isla.


We flew up to Brisbane on Thursday Nov 2nd, the Golf day was on the 3rd. It was incredible... :)


While in BrisVegas, we met the gorgeous Rel & Gabs!! Was definitely a highlight of our trip! Little Gabby is such an inspiration to us, she is almost 3 and has Ataxic Cerebral Palsy. Her improvements in the past 6 or so months have been absolutely mindblowing!!!

Hmmm what else has been going on....

Isla has lots of new words, too many to name, about 70 - 80 all up :) She has her gorgeous new AFO's too, no longer cries when they're being put on, but starts to pull on her shoe laces to take them off once she's had enough of them! She wears them for anywhere between 8-12 hours a day depending on when she wakes up! They are definitely making a difference though. Even though she rarely stands up in them, once they're off she can stand completely flat footed and cruises most of the time :)


The entry above is what we were given today at the PAHU - the assessment report from the Multidisc. screeing...


We had our first appointment with our speechie Kate, and our OT Melinda who are both really lovely!! Isla did pretty well until she cracked it when Ian took the playdough off her!


They're stoked with her fine motor skills, they're bang on where they should be :D Her gross motor skills are being looked after by Michael but they're improving ever so slightly every single day :)


Speechie is over the moon with little Missy's language skills since the screening! We're still going to see her just to get some tips on how we can best encourage her language, but they're stoked with what we've been doing with her.


OT is concerned about her associated tone/mirroring. She tried to show us some exercises to do today but Isla wasn't playing the game! Basically, we need to make the two halves of her brain function separately. To do this, we have to make her reach across her body for objects by holding down one side and putting toys etc on the other side...seems easy enough...in theory...we'll see both Kate & Mel every two weeks.

Tuesday, September 26, 2006


YIKES!


We went to the AFO Clinic today to have Isla assessed for the Orthotics she'll need to wear to help her walk. They look like what Forrest Gump wore when he was a kid but not metal & leather


She'll need one for each leg, and will more than likely have to wear them forever The Orthotist said that he wanted to cast her today and have her in them in 2 weeks time (they take 2 weeks to make!)


So our hospital physiotherapist called the PAPD who we lodged an application for funding with to see whether we could go ahead with having them made. We put in a form for funding back in June but we're still another 3-8 months down the waiting list So the Orthotist gave us the choice of calling them ourselves and pestering them until they put us on top of the list (this could take a month of calling daily), we could simply wait until we received the funding or we could fork out the $$$ ourselves - the actual dollar figure - $1484!!! I nearly fell off my chair! Mum is loaning us the $$$ until we get our bond back and can repay her.


With the PAPD we pay the first $100 and the government pays the rest, I was told they would only cost $500 each - but holy moly! Isla's will have a special locking mechanism so that she can have the hinge locked when she's learning in them then unlocked so that she'll have more movement.


They'll only fit for 12 months and only if she doesn't have a major growth spurt in that time!


So we had them made, they'll be sent to our physio when they're completed so we'll go there (and pay out more hard earned!) to have them fitted properly!


...it never ends!!...

Wednesday, September 20, 2006


Dr L was running late as usual...we didn't get in to see him until 12 and our appointment was for 10.45!


Anyway he's happy with the progress Isla has made since he saw her last time (in June I think) He said that the casting made a real difference so he's not going to go ahead with Botox just yet because Isla responded so well to the casting he's going to wait and see what the AFO Clinic says next Tuesday and try to get her into some AFO's ASAP. He wants them to have a fixed hinge so that she can wear them like her Thermoplastic Splints that Michael made her, but they'll also be able to move freely when she's built her confidence up more.


He was very pleased with her knee walking because he said that she's opening up her hip joint well (most kids with Spastic Diplegia can't do this) so he said it's a good sign (he smiled a lot while she did it!) He thinks she'll do well with the AFO's and will see her again at his next Clinic which isn't until March next year!


He explained that it's better for us to try the AFO before the Botox because she'd need to wear the AFO's once she's had the injections anyway (and will probably need injections in her ankles as well to stop them from rolling) so she'll need to be used to it - and also because it's non-invasive.


So it all went pretty well. Michael and Dr L said to just continue putting her boots on her (will have to get her another pair, these ones are ruined already!) and encouraging her to walk!

Tuesday, July 11, 2006 Our Latest Physio Update. Isla performed wonderfully, Michael was very pleased with her hand movements, they were a tad jerky before, but she was grabbing toys with ease today, so he was very pleased!


Her new boots are fantastic, Isla was standing flat footed (although a little stooped) while playing, so again, Michael was very pleased!!


We're going to the next Botox Clinic on September 20th, just waiting for an actual time now. Michael is going to contact the Physio's at the hospital to get us in for the plasters before we have the Clinic, so we can see whether they are beneficial for her or not.


Our funding for the AFO's has been lodged, but we will probably have at least a 12 month wait on that. Not sure when exactly we'll be getting them, I think we're trying casting first and if that fails, we'll move on to the AFO's- in the meantime, the boots are doing a fantastic job in pulling her feet flat. All in all, we're doing really well.


Michael has noticed a definite improvement in Isla in all areas. He is particularly pleased with her speech (now says Mum, Dad, Nana, Pa, Pretty, Tigger, Yep and No) but we're still going to see the Speechie at the Multidisc which is at the end of August - very exciting! In Michael's words, we've done a "fantastic job with her" which is so nice to hear. Michael said today that these next six months before Isla turns 2 are VERY important as we have to try really hard to keep her progressing so that she doesn't become frustrated with not being able to walk like most children of her age.


I'm still a tad overwhelmed by everything, I don't think that I'll ever really be able to accept Isla's CP. I don't really think that anyone really understands what it is we're going through, all they see is her smiling face and it's easy to forget that she has a problem. The tone won't ever disappear, she'll have it for her entire life, it's just a matter of helping her deal with it the best she can so that she has all the opportunities in life.


Next step - track down Dr A and find out when in October our MRI is, then book into his November Clinic at C'town, and then back to see Michael in 1 months time!!

Wednesday, June 07, 2006 First off the bat, I really like the Dr. He is really lovely and meticulous - what I like!!


He observed Isla for a while while she played with myself and Michael (physio). He looked at her hip xrays and said they were not valid because she was twisting so much when she had them taken in January (with three people holding her down!) he cannot rule out dysplacia in the right hip. She will need to have another set of hip xrays done but we're not sure when.


He felt her legs, Isla surprised us all by not fighting him like she always fights Michael! He noticed that her right leg is still significantly stiffer than her left. Both legs, however, are not loosing spasticity - they are actually becoming more spastic - that's so disheartening. Isla is also now standing higher on her tippy toes.


She is still cruising but won't stand unassisted. Isla *let* Michael pick her up again!! He held her hands above her head and walked behind her - she was actually taking steps - you should have seen the smile on Michaels face! he was beaming!! It's something that she's only recently started doing, but not very often. He said that it was a very good sign.


Also, Isla showed off her knee walking (another new addition) and Michael was very impressed, as he said it indicates that her pelvic stability is improving (phew!) meaning she'll better be able to stand/sit etc. Previously, her pelvic muscles were weak and she would fatigue quickly.


Dr L noticed that her thumbs are sitting at a strange angle, thinking that she may have spasticity in her hands as well, but her fine motor skills are fantastic, so it isn't a real concern of his at the moment.


What is the main concern to Dr L is contracture. Contractures occur when a muscle is not put through it's entire range of motion, causing tendon shortening. If this is what's happening for Isla, it means there will be less that they can do to help her.


Isla is a fantastic candidate for the Botox injections, however, because she seems to be going slightly downhill, he wants to give her the injections before she turns 2, which isn't government approved, however, there are many injections/medicines that children are given without Government approval.


It's a bit scary to take this next step into having the injections, but if it's going to help, then how can we not? For the injections, Isla will have to be admitted into the Children's Hospital at Randwick for the day. She will be given Laughing Gas while the procedure is done - that will be awful. The injections take about 3 weeks to start working and last about 6 months. She will more than likely have the serial casting (weekly) after the injections to maximise their effect. We see Dr L again when he gets back from Overseas.


Our next step is serial casting. Isla will be in plaster probably to the knees only, with her feet at 90 degree angles. We're still waiting to hear when and where we'll be having the casting done, it will more likely be at the hospital so that Michael has more people to help him as Isla was a tad difficult when having her thermoplastic splints made.


Dr L and Michael seem confident that Isla will get out of the plaster, they said it's not uncommon in children with the same sort of spasticity as Isla - so that'll be something to watch out for. Isla will have to have special orthotics made, called AFO's (Ankle Foot Orthotics) which will need to be made in the hospital by an Orthotist. They are really expensive (over $500 each) and will need to be altered in the hospital as well. We've filled out an application for funding for the splints, but, understandably, there's a subsantial waiting list for the funding. The AFO's will be the next step after the casting, but we have to wait for Isla's feet to grow big enough to fit into "proper" shoes as the AFO's need to be worn inside boots.


So, that's the story so far. As for me, feeling quite overwhelmed. Everything seemed really positive leading up to this appointment, and it's all quite crap now really. I'm not worried about the financial side of things, because we'll be able to pay for it all, with no drama's, but I'm just concerned that all her wonderful progress has stopped.


I'm sad because Im doing this all alone (so it seems as Ian forgot about her appointments) and I seem to be forever taking her to this specialist and that specialist, it's really exhausting - not physically but emotionally. Ian doesn't seem to understand, and nobody but the EB Forum girls really understand or appreciate what the CP rollercoaster is like.


I know that we are incredibly fortunate in how mild Isla's CP is, I saw first hand just how bad some children are while at the Paed Allied Health unit, but it doesnt stop the hurt inside. I just want my little duck to have every opportunity in life and I want her to be happy and healthy. I want to stop going to specialists, I want to stop trying to put her stupid splints on her, I want to be able to sit her on the floor and not have her fall backwards. I want her to be able to stand up properly. I want her to not get cramps in her legs. I want her to stop having brusies on her legs. I want her to be able to run and jump.

Monday, May 01, 2006


Another physio update!


We had all of Isla's measurements etc done today, she wasn't too pleased with having everything tugged and stretched so Michael had to estimate as best he could.


Next month will be very busy for us, we have an appointment with the Neurologist, Dr A, as well as a booking in the Botox clinic with Dr L.


We'll wait until she's been assessed by Dr L before considering serial plaster. Michael said that Dr L will see whether or not she will be a suitable candidate for the injections as it's extremely expensive ($450 for 100mL vile and children need anywhere from 1 -3 vials per visit, and not all children respond to it). Dr L will let us know whether to continue with the Thermoplastic splints or whether to move to hinged Ankle Foot Orthotics (AFO's) which is most likely to be the case. Dr L will also advise us on what further treatments, if any, Isla needs. Isla is still too young to have the Botox (Botulinum toxin) she'll have to wait until she is 2 - but given that she's 16 months on Saturday, it's not too long of a wait.


All a little daunting at the moment, but the reassuring thing is that Michael helps run the Clinic at Campbelltown Hospital, so while I swore black and blue that we'd NEVER go back there after the debarcle that was her Opthamologist appointment and CT scan, alas, we have to return, but at least this time there'll be a friendly face. (Isla even let Michael pick her up and play with her today!!)


Isla's pelvic stability is still a bit of an issue, but Michael seems to think it's more of a case of fatigue than lack of strength. We'll still continue on learning to sit properly and we have some new games to play that should help too.


After the clinic and the Neuro appointments, Isla will be scheduled in for an MRI - NOT LOOKING FORWARD TO THIS!!! She'll be under General Anaesthetic, which will be horrible, but it needs to be done.


Her standing and cruising is still going well. Her left foot is turning outwards now so we're going to try removing the right splint and only using the left to help stop the turn. We also have to look out for a trolley/barrow for her to walk behind. Last night and today she's trying to take her hands away to stand without assistance but she's not quite ready yet!!

Friday, December 30, 2005


Well, my little duck will be 1 this time next week!! I can't believe how much she's grown and each day she surprises me more and more!!


Not really much to update though, she's crawling like a champion and can go from one end of the house to the other! We play peek-a-boo and she crawls into different rooms looking for her Mummy and Daddy


Still hasn't put on much weight, seems to be stuck at 8kgs but eats like a horse. But still, she's getting longer!!


She went for her 1st swim on Xmas day and adored it loved it so much that her little jaw was chattering because it was getting cold in the water, but she kept giggling her head off...Today Nanny had to stay in the pool with her because she screamed when she tried to take her out!!


She's a real babbler now, baa is still her favourite, but also says Pa, Yum & I-yah which is her best effort at Isla - funny how she won't say Mum or Dad - Guess who runs this household


Her physio is going really well, we went from weekly visits, to fortnightly, now every three weeks. Our physio is so impressed with her progress, he, like the rest of us, is so very proud of her Isla is now pulling her self up on the furniture and is trying to stand! Although she's on her tippy-toes, she's doing it!!


Isla will be fitted for her AFO's on the day before her birthday (what a great present ) so we're not looking forward to this, but alas, it needs to be done!


Her naming day is in a week and a half, I still have nothing organised, have no idea who's coming, but hopefully it will be a good day