We had physio for the first time since Botox yesterday.

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

Happy Days.

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

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

Pics to come soon.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Relief.

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

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

Relief.

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.

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

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

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

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

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

Far Out.

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

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

Excellent.

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

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

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

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

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.

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

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

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

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

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

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.

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

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

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

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

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

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

Hi Everyone!


I've decided to blog here rather than Isla's other website, as it's a bit all over the place.


Today was a very busy one for us, we had to collect some hip x-rays before the Botox Clinic with Dr L at 8.30am. We only had a short wait before we went in to see Dr Lowe, Mel, Michael and 3 med students. Isla was observed without her shoes & AFO's initially where Dr L noted that her hips are affected by the way she W sits. Upon checking her hip xray, her left hip is at 3.0 which is within the normal range, her right hip, however, is at 13.8 which is not normal. We need to keep an eye on it as it is partially dislocating.


Dr L has decided that Isla will definitely require Botulinum Toxin injections this year. His Clinic is booked out until November, but he says she will have it after then. The reason for Isla needing the botox is that she still has quite increased tone in the calves and her hamstrings, which, despite her walking quite well, is putting extra pressure on her little hips.


So, now we wait and see whether Dr L is returning to the Hospital in the next 3 months, otherwise we need to book in to see him in his private rooms to organise for the Botox in late November/December.


We left Campbelltown Hospital and set off for Westmead Childrens Hospital, where we had to see Professor O regarding possible blank seizures.


It took forever to find a parking spot, then a good 15 minutes walking around the hospital only to find we were in the wrong building (despite being given directions from Enquiries). In the end 2 maintenance works had to take us to the right spot with their security passes. Once again we were on the wrong level and couldn't find the right suite.


Once we finally found where we were going, we saw Professor O, who is really lovely. Nowhere near as nutty as the other Neuro's we've seen. He gave Isla a full check, head circumference of 48cms, he's concerned about her weight and height, so we'll have to go back to see Dr F about. Isla was a bit cranky by this stage, and didn't take too kindly to having her shoes and "helpers" taken off again! She walked a little without them, but not too far. He checked her eyes, her reflexes, palette - everything, he was very thorough.


Isla had one of her "turns" while he was examining her, he doesn't think there's anything behind them, rather he thinks she's just "daydreaming" which is good news. He's going to schedule her in for a EEG in the near future, have to wait for his office to call us with a date.


Isla sang and danced for him, she counted to 16 which he was impressed by. He said that her overall cognitive abilities & language skills are well above average, stating that she is very smart.


So all in all not too bad, considering!


Happy birthday to Aunty Helen for today!

Sunday, March 18, 2007


It's been a while since I updated...


We've had a few OT sessions, and Isla is doing really well. Mel seems pleased - I guess, it's hard to tell. Isla's mirroring is becoming less noticeable, and her tremors are happening less and less :)


Speech Pathology is going really well, all of our work has really paid off. Isla now has a range of verbs equivalent to an average 3 year old! Now we need to work on concepts, like asking her what people are doing in stories. Should be fun. SP is the only one of Isla's therapies that I really enjoy. We've been told by Kate that we really don't need to see her anymore, but she asked whether I wanted to her to check up on her in a few months time, so I said yes. We see her in May.


Isla can now walk about 4 metres on her own, and is trying to run! She's still a little unsteady, and falls when she's not concentrating but such an improvement. We have the Botox Clinic on Wednesday so we'll see where we go from there.


Isla still has that "thing" on her eye. We've seen 4 GP's and one Opthamologist about it. If it's still there in another 3 weeks we have to go back to the Opthamologist and have her scheduled to have it surgically removed under GA at Campbelltown Hospital. I'm pretty certain it will still be there, she's had it for 5, almost 6 weeks already...

Wednesday, February 07, 2007

So we visited a new GP on Saturday, as we still haven't heard from the Neuro regarding the MRI results. The GP confirmed that it does definitely sound like blank seizures, and has given us a non-specific referral to Westmead Children's Hospital for whatever Neuro can see us the fastest so Isla can have an EEG which will measure the volts/electrical activity within her brain (or something equally as interesting) Sounds like lots of fun!


Botox Clinic has changed to the 21st of March now, although Michael isn't sure whether they'll go ahead with the injections or wait and see. She's progressing really well with the help of the AFO's so I think they may be reluctant to change anything at the moment. I'm very pleased with this attitude, the less invasive the better I say!


We had OT today, and again another comment about how "Michael wouldn't like to see you sitting like that Isla" Argh! It's either W sit or lay on the floor...take your pick! Isla was an angel for Mel today though - we did lots of activities and Mel was blown away by how well she's speaking.


I was under the impression that we were seeing the Speechie today too, but that's not for another 2 weeks. Kate will be stoked! I sat down the other night (thinking we had Speech Pathology as well as OT) and wrote out a list of all the words & phrases Isla can say = we're up to 247 :D BUT since then (Sunday) I've remembered a whole lot more that she can say so I'd estimate we're closer to 260+ :D :D I would like Kate to continually review Isla though. I'm not sure whether her vocabulary is on track/behind/advanced. I do know though, that her pronunciation is a lot better than a lot of children of similar age or slightly older which is wonderful.


We're reading a lot of stories at the moment, we read the Tale of Jemima Puddleduck, which was an Easter gift from last year from gorgeous Aunty Jess. We also read some Donald Duck book in the waiting room at the Paediatric Allied Health Unit...It's really making a difference with her, she's identifying so many different things now! I hope I'm never ever too busy to sit down and read to my little girl.


2 years old is a gorgeous age, Isla is such a wonderful companion, so happy, so free spirited - but becoming more headstrong (must be Ian's genes coming through! LOL) No's are becoming more adamant, but I think she's just testing the waters a little...time will tell...


Much love to everyone!


A big HAPPY BIRTHDAY to Master Coops! Hope you had a wonderful day!

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!

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!!