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. :(

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.

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

August 5th to 12th is National Cerebral Palsy Awareness Week.

Please take some time to read through Isla's site, or visit The Spastic Centre Website or CP Australia to see what's going on in the world of CP.

It is estimated that in Australia alone, a child is born with CP every 18 hours.

Cerebral Palsy is a permanent condition that affects movement. There are three different types of CP, Spastic (which Isla has, which is increased tone), Dyskinetic (Athetoid and Dystonic) and Ataxic.

Please help increase awareness of CP :)

Isla and I drove to Avoca today to meet up with some gorgeous EB girlfriends who were in town for ABR. It's the 2nd time I've been lucky enough to meet Bron and her gorgeous little boy Cooper (from Melbourne). So great to see you both again. Can't wait til you get back home and back online ;)

It was so wonderful to meet Deb too and her little Man William, who is just the cutest little guy in the world! Deb is so funny, I hope that we're able to meet up again in the near future!

I completely forgot to get a pic with Deb & William, so I will have to hassle Bron to take some and send them to me :) Here we are with Bron & Coops (excuse my 20 chins! I'm the one holding Coops!)

Busy next few days for Isla and I again, off tomorrow to visit big Nana, Aunty Helen and Ashlie - and I'm sure there's something I'm meant to be doing on Wednesday too but I can't remember what!

Sunday, May 27, 2007


Just arrived home from Brisbane where I stayed with the Narelle and her beautiful family.


Wonderful but short trip away, I was finally able to meet with Bron and Coops! You guys rock!

I "met" Narelle and Bron through the EB CP support group in 2005. Such beautiful and inspiring women.

2 good flights, read a good book and had a wonderful time all round.

Wednesday, May 16, 2007


Today we saw our Paed again. We haven't seen him in a very long time. Isla was so good when we saw him, although she didn't take too well to him giving her a stamp on her hand and made him wash it off LOL


The things we discussed:


*Walking - He had only met with Michael that morning, and Michael was telling him how well she's doing. Isla can now walk unaided for about 10 or so metres, it depends on what's in front of her. The more excited she is, the more likely she is to fall over. Isla is also able to stand unassisted with bare feet and can even take a few wobbly steps without her AFO's :)


*Toilet Training - He asked where we were at with it. He's of the same thinking as me, we need to get her balance sorted out before we can contemplate a potty. She won't be able to handle it if she's uncomfortable. We'll get there :)


*Weight - He's convinced that she's just petite, she's only just reached 11kgs so it's taken her about 18 months to gain 1.5kgs. He's not concerned about her weight.


*Seizures - We were given a referral for Liverpool Hospital for Clinical Neurophysiology. There she'll have a "Sleep Deprived EEG" to see whether these "episodes" are infact seizures or simply Isla just zoning out. He seems to think the latter as there's no convulsions etc associated with them. I do hope he's right.


and finally
*MRI results - I informed him that we'd been waiting since October for the results, so after a quick phone call to the Sydney Children's, his receptionist appears with the report in her hands :) It reads as follows:


CLINICAL HISTORY:
Spastic Diplegia. Born at 35weeks gestation. Second Trimester antepartum haemmorhage.


TECHNIQUE:
The following sequences were performed through the brain:
T1-weighter sagittals
T2, FLAIR and gradient-echo axials
Diffusion on weighted imaging
Axial true IR
MPRAGE


REPORT:
There is excessive abnormal signal (hyperintense on T2 and FLAIR and relatively hypointense on T1) in the peritrigonal periventricular white matter and centrum semi ovule bilaterally. There is also a reduction in the volume of the peritrigonal white matter bilaterally. Ventricular size is normal but there is a slightly wavy contour to the lateral wall of the trigone of the right lateral ventricle. The surface CSF spaces are normal in size and appearance. There is no shift of midline structures or other evidence of mass-effect. There is no structural abnormality. Myelination is appropriate for age. There is no evidence of space occupying lesion, extra-axial coillection or past parenchymal haemmorhage.


COMMENT:
The appearance are consistent with periventricular leucomalacia.


So there you go.


From the way Dr F explained it to me, it basically means that parts of the brain that supply the spinal column with fluid aren't perfect in Isla's brain. She has some tissue missing. It is most often found in children born prematurely (Below 37wks), with birth weight under 2.5kgs (Isla was 2585g). It could have been caused by those two factors. I may be because of a virus I had while I was pregnant (which I had while in hospital). It may have been caused by the placenta praevia - or a combination of all of the above...we'll never know.


Anyway, good news is that it won't get any worse. Also, if there are to be any more little people in this family, we are at the same risk level as the rest of the population :) He also said that I was a slight risk of PP again, although some other OB's have said that I'm at a 90% - who knows!

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, 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.

Tuesday, June 06, 2006


Neurologist appointment


Our appointment was for 3.15pm - yet we didn't get in to see Dr Andrews until almost 5pm Isla was getting a tad cranky and I was bored out of my mind - couldn't even watch Big Brother on my mobile because I'd run out of battery!!


Once we finally got in to see him, he studied Isla quite meticulously, he is indeed a very 'unique' man. He'd be asking me questions and interrupt himself by commenting on how cute Isla was!!


He said that in his opinion she was/is a "textbook diplegic" but he wants to prove this hypothesis (his words!) he's a bit of a crack up. Basically, he said that he *thinks* Isla has CP but there is a very slight chance that it is something else (hereditary) - but what that is he didn't elaborate. He said that in order to prove his theory, he'd need to do an MRI. He said that because Ian and I are so young (both 24) and that we're both healthy/no family history, it is probably more a case of 'bad luck' that Isla has CP.


He helped me understand what role my Placenta Praevia played in the CP. He said that the part of the babies brains that control movement develop most during 25-32weeks. I suffered 12 bleeds from 22-35 weeks. He asked when I first felt movement while pregnant, and commented how 15 weeks was early and then asked if Isla was active throughout the pregnancy, which she definitely was - even when I was bleeding she would tumble & jive He said that because Isla was so active, she would require more blood from the placenta to keep up with her, and that because I was loosing blood, the part that became compromised was her brain - and as the brain cells don't regenerate she was left with CP. He also said that the Placenta Praevia was also a case of 'bad luck'.


He said that he wants to definitely confirm it is CP so that Ian and I can go on TTC#2 without any worry - which is reassuring to me. He is going to book us in for an MRI at the Sydney Children's Hospital at Randwick sometime in October - which isn't too long to wait.
Overall, Im pretty pleased with how today went. He said that the majority of Diplegic children have no intellectual impairment, and he commented that she was very very bright


We see him again in November.


One thing he did that I thought was VERY weird, while he was asking me q's about Isla, he said, "Does she look like Dad?" and I said, "yes, she's Ian all over" and he wrote in his notes, "looks like Dad" what the???

Monday, March 20, 2006


Missy Moo had her appointment with the Opthamologist Dr H today, who we had to wait 2 1/2 hours to see - *insert cranky smilie here* Lucky he was really nice!


She was a very brave girl, despite the fact that he literally had her eye ball pushing out of her eye. Poor little mite soldiered on, although Mummy's ears are still ringing!!


The good news is that he said that her eyes are fine WOOT WOOT!! One worry to cross off the list! She is slightly long-sighted (just like her Mummy) but he believes that it will correct itself by the time she's ready for school!


We don't have to worry about having her eyes checked for another 3 1/2 years - thankfully, we're in no rush to go through it again!


We're waiting to be contacted by the Co-ordinator for Pathways so we can get involved with the Spastic Centre and then hopefully be accepted into the Cerebral Palsy Clinic at either Sydney Children's Hospital or Westmead. Fingers crossed we get in so we can kiss the Paed goodbye!


She's doing really well in all departments now, eating is still an issue, but Isla now has 11 teeth - with another 2 on the verge of cutting through! She's sleeping like a bandit now, so I think that's helping her keep the weight on!


Still trying to walk, little dare devil is even standing without holding on - I think she'd like to see her Mum with a pace-maker by the time Im 25!


Will post another physio update soon!

Thursday, November 24, 2005


Yesterday had to be the most heartbreaking & exhausting day of my life.


I took Isla to the hospital for her CT scan and blood tests. We were admitted at 9.30am and went for our CT scan at 12.40..She spat out most of the drops that they gave her to sedate her, so she wouldnt sleep for the CT - after 1 hour and 45 minutes of me trying to rock her to sleep!


So back up to the ward we went to have a cannula put in and her blood tests...they'd left the numbing patches on for 3 hours and her skin was red-raw poor little thing, they're meant to be left on for 45 mins max...


It took 4 people to hold her down to get the blood tests done (and this was with Isla wrapped in a bed sheet with only one arm out!) She cried to hard and for so long and there was nothing I could do about it but cry along with her....The cannula and blood tests took 20 minutes...


So back to Radiology to have the CT - this time she was given sedation through an IV - which only made her drowsy and floppy but worked well enough to get the CT done. It was so scary, they had a Paediatrician stay with her the whole time in case something went wrong because they weren't sure how much sedation they'd given her and thought she may overdose


Anyways, our Paediatrician met us at 5pm, both of us utterly exhausted and dying to leave...He gave us the fabulous news that the Cerebral Palsy is so mild that it there is absolutely no indication of it in her brain (it's that mild & minute) I was ecstatic, he checked her legs again and said that there's still stiffness, but it's getting better. He said with physio it should be corrected almost 100% and if not, then she'll have Botox injections to relax her muscles. He said we wouldnt have to see him again for a few months He showed her reflexes to some medical students and described her as having "True Spastic Depligia" but he didnt say it to me.


He's still worried about her weight, she's only 7.8kgs So he said he'd better see her again in 3 weeks just to check her weight.


All her bloodwork came back completely normal but we still have to wait 3 weeks for her chromosome inspection to come back

Tuesday, November 15, 2005


Well, today was the day, we took Isla to the physiotherapist to be assessed for Cerebral Palsy.


She was so tired when we got there, and screamed in frustration, so he didnt get the chance to look her over properly, but he did say that there is increased muscle tone in her lower legs which could possibly be Cerebral Palsy, but without further assessment and diagnostic testing, couldn't confirm. He said whether it is CP or a gross motor development delay, the treatment is the same. He gave us lots of exercises for her to do to try to relax the muscles in her calves and to try to bend her foot into the 'proper' position (Her feet are pointed, like she's on tippy-toes) We now have a weekly session with him, and he is fabulous (and married to a girl I know as it turns out!)


So we were feeling confident going in to see the Paediatrician straight afterwards. He checked her again, and is still concerned about her muscle tone and said that he is convinced that she has Cerebral Palsy Poor little munchkin. He said that while there is signs of improvement from our last consultation (2 weeks ago) it's still not enough for him to think that it is a developmental delay.


Next step, this week sometime (awaiting call to find out when exactly) Isla has to be admitted to Hospital for bloodwork and a CT scan The Paed is going to meet us at the hospital to go over the results.


He told us it very common in prem babies and those with low birth weights and would have come from lack of oxygen during her delivery - - Which is news to me, I had a GA so Ian couldnt be in with me, but we were told she had no problems at birth (Apgar score of 9) and she went straight on to the ward. The physio was very surprised that it wasnt picked up when Isla was checked by the paediatrician before we were discharged from the hospital. I might have to chase this up with the hospital...


It still doesnt seem real, it will hit me when I least expect it I guess.


I am happy though, because other than her little legs not doing exactly what they're meant to, she's a very happy and healthy little girl, and I love her more than the stars in the sky...


I think that's all from us for now...