Tuesday, December 29, 2009
Friday, December 18, 2009
Saturday, December 12, 2009
Monday, November 30, 2009
Tuesday, November 17, 2009
So very slack.
I haven't been in here for ages, I've been so preoccupied with so much stuff.
Isla is doing really well. Just this last week she seems to have grown up so much - it's insane.
2 weeks ago we had "Big School" Orientation and she loved it. It was such a huge step for the both of us. It was a really emotional experience, more so for me than for Isla.
As we were walking in to the hall, she started crying and told me she was scared and wanted to go home. She clung to me like never before as we sat in the hall waiting for her and the other children to go off to the Kindergarten classes to play while we learnt the school rules.
I sat there wondering whether I was doing the right thing for her. Maybe I should home school her? Maybe she should wait another year? All the other kids were SO much bigger than her and more confident.
Then one of her pre-school classmates came up to her and told her she was coming to the school too. Isla was over the moon. Everything changed. She gladly walked off into a sea of kindy kids, confidence beaming from her. She was so excited.
We sat and listened to policies for what seemed to be an eternity before we could her chatter from the canteen behind us.
There they all were, our little almost "big schoolers", enjoying recess at big school.
She spotted me and came running up to me, telling me how much she loves big school and can't wait to go back. She told me they did colouring, and read a story and she made a new friend.
It turned out to be wonderful.
We put a calendar up on the fridge for Isla to mark off each morning when she wakes p, counting down to the next orientation at big school, which is this week. She is thrilled.
I received a call from the Botox Dr, Dr L today, Isla's botox was scheduled for December 21st, but she's been brought forward to the 30th of this month. Dr L seemed to think it would all be a bit to much leading up to Xmas, and I am very grateful to him for that. It may also mean that Isla will not be in plaster for the first few weeks of big school.
What a relief.
What else has been happening?
We're applying for funding for Isla to have an aide at school with her, mainly for recess and lunch times and for sports days. She'll need help navigating around the playground, and stand-by assistance going to the bathroom. Hopefully we'll be successful.
Isla refuses to have photo's taken, so unfortunately I have none to upload of her!
Sunday, September 6, 2009
Thursday, August 13, 2009
We've been busy little bees around these parts lately.
Here's the latest on Miss Isla.
We saw Dr L on Tuesday, the Botox Dr. He's still happy with her progress although she is beginning to tighten up again - particularly in the hamstrings.
He's stressed that she really needs to break her W sitting habit, because if she continues, she will no doubt require some sort of hip surgery in the future :(
We're booked in for more Botox on the 21st of December, yes, 4 days before Christmas. BUT, the good news is that she'll be having it under GA, because she remembers everything about last time.
He mentioned some new study that they're trying to get funding for, some sort of electrical current therapy (I could have that wrong, but the word electrical was definitely in there somewhere!) and he thinks Isla would be a suitable candidate for the trail. I have absolutely no idea about what it all involves, but I'll wait to see what info Dr L gives me before I completely dismiss it.
We had a Speech assessment at the Spastic Centre the past two Mondays (over two appointments because Isla was being "stubborn"). I get the report on Tuesday, but the Speechie said that she's very happy with her skills and doesn't seem to think she has any problems in that area.
We saw the Paediatrician too. He's given us a referral to the Sleep Clinic at the local hospital. Still waiting for them to call us back with an appointment time. Isla is going to hate it, but she's such a poor sleeper, plus she snores and grinds her teeth, it'll be good to get to the bottom of it all.
Dr F (the Paed) did check her tonsils and adnoids but thinks that they're okay, a little on the largish side, but still very much okay. He'll wait for the results of the Sleep Clinic before we make any more decisions.
The lady from the DET called this week to help organise Isla's transition to school, but because we've now moved, we have to wait for another lady to contact us. The house we've just moved too is a very short walk to the local public school, so we hope that Isla will be able to go there. Dr F told me that it is a very good school and he thinks it will be suitable for Isla, he's writing them a letter all about her.
We pick up the new orthotics tomorrow. Finally. It's been completely impossible to find a time to get in to the Prince Of Wales Hospital to get them fitted. Then we get to go shoe shopping! Isla is excited. I hope they keep her heels down.
Not much else happening though.
We're back on the books with the Spastic Centre, so now we're just waiting for them to call us and get into some therapy over there.
I have some photo's but not on this computer. Will upload some tonight!
Tuesday, July 28, 2009
Isla has had such an attitude lately. I'm trying to ignore it, but wow, it's full-on. She's uber emotional at the moment, the slightest thing sets her off into a stream of tears. And she's cranky, defiant, and just generally naughty.
We've never really had any behavioural problems (well, I shouldn't say problems, this is really an 'issue' is suppose) so it's all new to us.
I know there has been a bit of change for her to get used to lately, me going back to work, then leaving work, botox, we've moved, I'm now going to school, she's being minded by my Mum and Ian more. I guess it all contributes to the 'issues', but ugh, I just want my lovely little girl back!!!
On her progress though, we've been having weekly physio and she's improved SO much. Huzzah! She's happy to do her exercises these days, which is a welcomed change.
We're accessing therapies through the Spastic Centre again, they're going to contact us about group therapy, dancing and something else, I can't remember.
They seem to have it all going on, so I'm happy with the decision to go back there. I explained that in the past Isla was the mildest child there and missed out on interaction with the therapists, they understood and said they'd work on something for her.
We have a speech assessment next Monday. Should be interesting.
Saturday, July 4, 2009
Remember we saw Dr B a few weeks back? Here's the report (feel free to fast forward to the results).
"Isla is referred by Dr F, Paediatrician, because she has Cerebral Palsy and will probably go to school in 2010 and this is a developmental assessment towards that. She attended an appointment with her mother Allison on Friday morning the 12th of June.
There was some concern as to how her needs will be met in school. Isla is considered to be thoughtful and a caring child who is affectionate towards the family and friends. She has good communication skills and a large vocabulary.
Isla was born at Liverpool Hospital five weeks early weighing 2.585kg. She had a head circumference of 34cm. She was born by emergency caesarean section. There was grade IV placenta praevia and there was severeal antepartum haemorrhages during the gestation. Her Apgar scores were good at birth 9 at 1 minute and 9 at 5 minutes. She was discharged home at 5 days.
There were no neonatal seizures. There was some jaundice.
She has had occasional viral illnesses. She has had suspected seizures though they are considered to be day-dreaming episodes. She has had Botox injections at the Sydney Children's Hospital. Her current diagnosis is Spastic Diplegia/Quadriplegia.
She has had her vision and hearing tested and all is considered to be well though she has not had a recent hearing test.
Isla pulled herself to stand at 12 months and walked at 26 months. She walked upstairs at about the ages of three and a half. She can pedal a tricycle at the age of three and a half. She started babbling at six months, said her first word at 9 months and started joining words at 18 months. She started speaking sentences at around the age of two. She tries to do buttons but has difficulty with that, She tries to help with dressing but has difficulty. She is is able to feed herself with minimal difficulty. She is learning to use a knife. Isla knows numbers, letters, colours and shapes.
PLAY AND BEHAVIOUR:
Isla is generally very well behaved. She plays happily on her own and with others. She attends Kindy on Wednesdays and Thursday s from 10-4 and enjoys the time there. She has occasional toileting accidents and she is generally considered to be physically awkward.
Past assessment using the Bailey's Scale at 20 months by the CAT team at Campbelltown Hospital found that she had some motor difficulties.
Speech Pathologist, Physiotherapist, Occupational Therapist, Ophthalmologist x2, Neurologist x2, The Spastic Centre.
OBSERVATIONS DURING GRIFFITHS ASSESSMENT:
Isla at 4yrs and 5 months (53 months) was presented with tasks from a test called the Griffiths Mental Developmental Scales Extended Revised (GMDS-ER) which assesses the mental development of young children (from Birth to 8 years, May 2004). Standardised tests are constructed for the purpose of determining a child's level of performance relative to other children of similar age. The Griffiths Scales examine a child's mastery of a number of different skills and thereby provide a behavioural yardstick of a child's level of maturity. The following abilities and levels of performance were obtained in 5-6 sub scales:
A. Locomotor Skills - This scale assesses gross motor ability to balance, and to coordinate and control movements. This includes assessing walking up and down stairs, kicking a ball, riding a bike, jumping and skipping.
B. Personal-Social Skills - This scale assesses the proficiency in the activities of daily living, independence and ability to interact with other children. This includes activities such as dressing, competency using cutlery and knowledge of information such as name, date of birth and address.
C. Hearing-Speech Skills - This scale assesses the expressive and receptive language skills. Items tested include naming objects and colours, repeating sentences, describing a picture and answering questions about comprehension, similarities and differences.
D. Eye-Hand Coordination Skills - This scale assesses fine motor movements, manual dexterity and visual perception skills. This includes threading beads, cutting with scissors, copying shapes and writing letters and numbers.
E. Performance Skills - This scale assesses the manipulation skills including the speed of working and precision. This includes building bridges and stairs, completion of puzzles and pattern making.
F. Practical Reasoning Skills - This scale assesses the ability to solve practical problems, understanding of basic mathematical concepts and questions about moral and sequential issues. This includes counting and comparison of size, length and height.
Locomtor Skills Age Equivalent Less than 24months
Personal-Social Skills Age Equivalent 40 months
Hearing and Speech Skills Age Equivalent 56 months
Eye and Hand Coordination Skills Age Equivalent 52 months
Performance Skills Age Equivalent 37 months
Practical Reasoning Skills Age Equivalent 50 months
Isla is a delightful child to assess. She has very good language and communication skills. She scores in the low average range principally because she has fine motor and gross motor difficulties (she has difficulties with motor planning). Isla is doing very well and will fit nicely to a mainstream school where her physical needs can be met.
Because of this she requires a transition to school referral so that the family can investigate with the DET an educational setting where her physical needs can be met. She might need things such as gradual access ramps for easy access and she might need tilted writing surfaces. Isla is noted to be able to walk about 100 metres before she becomes tired and so these things need to be taken into consideration. She falls over fairly frequently and though this should be no reason for her not to attend school it is something that needs be taken into account.
Tuesday, June 30, 2009
This is the letter that arrived after our review with Dr L, one month after Botox.
"Isla had the botox injections on 21 May 2009. Repeat xrays were done at the time and showed RMP of 11% and LMP of 4.5%.
Although it took a little while for Isla to wake up, she went home that day.
Her parents report that it was easier to get her into orthotics for the first week, but she was a bit wobbly on her feet. Now, she is not falling as much. She can heel-toe walk.
Isla's parents report that Isla has been reviewed by Dr B, and in his assessment, Isla is suitable for mainstream school. He is happy with her results.
When I saw her today, she was still tight, particularly in the right gastrocnemius and soleus, more than the left. She will need casting. Gastocnemuis length was just on plantargrade on the right and +15 on the left, with initial at -10 and plantigrade respectively. Soleus length was +15 on the right and +25 on the left, with initial catch at plantigrade and +10 repectively. Isla was walking straighter with her right leg, with positive progression angles bilaterally.
She will be reviewed in 2 months time".
Again, no idea what it all means, but will endeavour to find out today at Michaels.
Tuesday, June 23, 2009
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.
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.
Thursday, June 18, 2009
After the appointment with Dr L, we head down the road to the Prince Of Wales Hospital to collect Isla's new orthotics. We get there, and Isla LOVES the purple butterfly design I picked for her *phew*. The Orthotist still needed to cut them down etc so we go back tomorrow to collect them, but we did bring home the above-pictured wrap around braces.
Monday, June 15, 2009
Isla did really really well.
Dr B said that there's absolutely no reason why Isla shouldn't go to kindy next year. Hooray!
The assessment had to go as long as Isla could keep answering questions correctly. Dr B said that in our area, he'd never had a child as young as Isla get so far through the test. There were pieces from the test kit that he had never used before, because no one had reached that far :)
So, we'll get a copy of the report when it's ready, so will the DET and we'll set about finding a school for Isla.
Friday, June 12, 2009
Today Isla has her appointment with Dr B, the one I had so much trouble organising earlier in the year.
So, they sent a letter the other week asking me to confirm the appointment by a specific date. With all the goings on with Botox and me going back to work, you guessed it, I forgot to confirm. I called them up and told them I received the letter after date (ha ha!) and they said no problem - excellent.
Inside the envelope with the letter of appointmnet was a questionnaire. 10 pages worth that I have to fill out and take with me to the appointment. Quite generalised questions, but it makes me wonder the actual point of me filling out the damn thing when they're going to be assessing her anyway?
I wonder if they read my answers first whether it will sway their thinking in anyway? Will it have a bearing on her results?
The questions go like this: (and I'm jotting down some of my answers for future reference too!)
REASON FOR REFERRAL:
Who suggested your child be assessed by this service? Our Paed, Dr F.
What are your main concerns, if any? Isla has Cerebral Palsy. We'd like to have her assessed to see whether she's physically ready for school in 2010. Concerns: Fine & Gross motor skills.
Are your child's difficulties causing problems within the family? Please explain. No
What do you think are your child's strong points and good qualities? Isla is very thoughtful and caring. She is very affectionate towards family and friends. Isla has good communication skills and a large vocabulary.
What are you expecting from the clinic? Some indication on where Isla's development is at, what things we should watch out for in the future, and help with finding assistance for Isla.
Was your child born in Australia? Yes.
What languages are spoken at home? English.
Other children in the family. Sister, Harper.
Primary carer. Mother.
Who lives in the family home?
Any other learning problems in the family?
Medical illnesses on either side of the family? Diabetes on both sides of the family.
Were there any medical concerns during the pregnancy? Please describe.Grade IV Placenta Praevia. 12 haemorrhages, 1 clot betweeen 25-35wks gestation. Bedrest from 26 weeks.
Did the child's mother take any medications or other drugs during the pregnancy? Please describe. Intramuscular steroids at 28 weeks.
In which hospital was your child born? Liverpool.
Was the child born full term? How many weeks early? No, 35+2wks.
How was your child born, eg normal delivery, caesarean etc? Emergency caesarean.
Where there any complicaitons with your labour? N/A
Birth weight? 2585grams
Birth length? 49cms
head circumference? 34cms
Was your child unwell following the birth? Jaundice.
Do you know the baby's APGAR scores? 1min? 9 5 mins? 9
How many days old was your child when discharged from hosptial? 6 days.
Immunisations up to date? Yes.
Please list any medical information regarding your child: Past and present health, include details of any illnesses, congenital or medical conditions, accidents or operations, seiaures, hospitalisations, head injury, headache, febrile convulsions, constipation, diarrhoea, etc. Cerebral Palsy. Suspected blank seizures. Tonsilitis. Occasional 'flu (including fever & vomiting).
Medications? please list. N/A
Does your child have any allergies? Drugs? Food? N/A
Have hearing and vision been assessed? Hearing at birth - passed. Vision with Dr H in 2006.
Have you ever had any concerns about your child's hearing? No.
If you were able to put an age to your child's current skills, what would it be?
Rolled over - what age? Not sure.
Sat alone without support - what age? 10 months.
Crawled - what age? 11 months.
Pulled to stand - what age? 12 months.
Walked alone - what age? 2years 2 months.
Run - what age? 2.5 years
Jump - what age? 3.5 years.
Walked up stairs - what age? 3.5 years.
Tricycle - what age? 3 yrs 4 months.
Babble - what age? 6 months.
Said first words - what age? 9 months.
Put two words together - what age? 18 months.
Speak in sentences - what age? 2 years
Used a spoon him/herself - what age? 12 months.
Dress him/herself without help - what age? Still unable 4.5 years.
Toilet trained - bladder day/bladder night/bowel - what age? 3 years 7 months.
Does your child use both sides of their body equally? No.
What was your child's first word? Isla - 9 months.
Does your child point to indicate their needs? Yes.
Does your child have a preference for the: Right Hand, left hand or no preference? Isla has better control with her right hand and usually picks up pens/scissors etc with the right, but will often swap hands mid-activity.
Please describe how your child helps you with dressing him/herself? Isla tries to do up and undo buttons but doesn't have enough fine motor control. She also tries to put on pants and jackets but does not have the flexibility to bend/stretch to do it unaided.
Please describe how your child helps you assist with feeding him/herself? Isla is able to feed herself all sorts of food with minimal difficulty. She is learning to use a knife properly.
Does your child know any: numbers? Yes, Isla can count to 20 and to 10 in Spanish. letters? Isla knows the alphabet by heart and can identify letters by sight. She can also identify some words. shapes? Isla knows a number of different shapes. colours? Isla knows lots of different colours.
Are there any skills which your child used to have that he/she no longer has or any that have deteriorated? If yes, please explain? No.
Does your child use a feeding tube or a special feeding method? No.
Does your child have a special type of diet or a food allergy? If yes, list reason or diet type. No.
Does your child have problems sucking, swallowing or chewing? No.
Is your child a fussy eater? Yes.
Does your child have any problems with constipation, diarrhoea or vomiting? No.
Does your child eat 3 times a day? Yes.
Is your child eating chopped soft foods? Yes, and hard food also.
Is your child drinking from a cup? Yes.
Is your child eating meat, chicken, fish or eggs most days? Yes.
Is your child eating fruit and vegetables most days? Yes.
Please describe your child's behaviour at home? Isla is generally very well behaved. She happily plays on her own with her toys, uses the computer, and colours in. She is a little defiant at times, particularly at bed time.
Please describe your child's behaviour at preschool/school or away from home? Isla varies from being clingy with the teaching staff to very well behaved and follows directions without problems.
Describe your child's current sleeping pattern:
Does your child sleep too little or too much? No.
Does your child snore? Yes.
Does your child have disruptive sleep behaviour? Yes.
Does your child make normal use of eye contact? Yes.
Does your child play with toys imaginatively (eg pushes toy cars around, feeds dolls, tea parties etc)? Yes, Isla has a very vivid imagination and is often found in her room hosting tea parties and role playing with her toys.
Does your child enjoy lining up toys? Yes - Isla especially likes to line up fridge magnets and pegs.
How well does your child play with other children? Isla plays well with her peers - although she is very selective who she'll play with.
Does your child seek comfort if they get hurt? Yes.
Does your child show affection towards other people? Yes, although she is generally very shy and reserved upon meeting new people.
Does your child bring you objects to show you? Yes.
Does your child use his/her index figer to point or ask for something? Yes, and sometimes her thumb.
How does your child react to loud noises? Isla is scared of loud things such as lawn mowers , hand-dryers etc. Upon seeing such items, Isla's first reaction is to cover her ears and hide from the item until the noise is removed.
Does your child have any obsessions or strict routines? please describe. No.
Does your child have excessive tantrums? If so, in what circumstances? No.
Is your child overly aggressive or destructive? please describe. No.
Is your child overactive? please describe. No.
Does your child have poor concerntration? please describe. No.
Has the long daycare, childcare, kindergarten or school indicatied any concerns to you about your child? Only about Isla's occasional toileting accidentgs and general clumsiness.
Has your child ever repeated a year at school? No.
Has your child had any previous assessments related to their development, learning or behavious? if yes, please provide the details. Isla had a Bayley scale assessment at 20 months by the MCAT team. Peabody Fine Motor Assessment by OT in Feb 09.
What other agencies or professionals have been involved with your child?
Have there been any major events, changes or traumas that have occurred wihtin your family, recently, or in the past? Arrival of baby sister in November 2008. Mum has gone back to work as of May 09 after Maternity Leave. Isla seems to be distraught with me leabing her at daycare and dancing lessons.
Is there anything else you feel may be valuable for us to know for the assessment and treatment of your child. Isla can walk approximately 100 metres before tiring (at most). She generally falls over every 15-20 metres. She cannot go to the toilet without assistance (cannot get on to the seat).
Considering the issues/concerns you have identified, what do you believe is the cause? Obviously Isla CP is the cause of her main problems, but I do wonder about learned helplessness - with Isla insisting that she can't walk very far (at the shops for example) or can't dress herself.
Are there any further problems that you believe stem from these issues/concerns? As above.
What do you fear moset about these issues/concerns? That Isla will struggle with day-to-day tasks at school (particularly navigating school yard/playground) and toileting.
Tuesday, June 9, 2009
Thursday, June 4, 2009
Thursday, May 28, 2009
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. :(
Friday, May 22, 2009
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.
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.
Thursday, May 21, 2009
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.
Wednesday, May 20, 2009
"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.
Monday, May 11, 2009
Tuesday, May 5, 2009
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".
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??????
Sunday, May 3, 2009
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.
Tuesday, April 28, 2009
She has good taste, what can I say. Isla had her first train ride ever (at 4 1/3 yrs of age!) into the City to get Aunty Kate a pair of earrings. She thought she'd "Top Model" it up in the entrance to Tiffany & Co. Now she knows where to take Daddy shopping for Mummy's Mother's Day present.
Thursday, April 23, 2009
Monday, April 20, 2009
Thursday, April 9, 2009
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.
Thursday, April 2, 2009
Isla's kindy sent home a really interesting hand-out this week about school readiness. I've never really thought twice about not sending her to school once she reached the age where she could start. Now I'm reconsidering.
I'll share it with you..It's called "Am I Ready for School?"
Dear Mum and Dad,
I was born after March so please carefully consider my readiness for school
next year before enrolling me.
Remember that the legal starting age for school is 6 years of age.
Remember that I may be a whole year younger than children who will start
next year, and I may not have the social and academic skills necessary to
compete with these children.
These things may not show up until the later years of schooling and the
decision you make will affect my entire life and attitude to learning. Please
give this matter some serious thought.
To cope with school I need to be self-confident and have a positive self
image, not just at home where everything is familiar, but also in a large group
I need to be able to communicate freely and be verbally understood. I also
need to be able to follow complex directions.
I have to be able to concentrate on any activity for a set amount of time
to complete a task.
I have to be independent and able to care for myself - toileting, dressing,
and taking care of my belongings.
I also have to have social skills - being able to deal with frustration,
anger, being able to co-operate, respect others and their belongings and to
Mum and Dad...being able to write my name, know my ABC and how to rote
count are not so important. If you are going to teach me these things, please
Writing should be taught in the NSW foundation style. It has special letter
formation and the direction of the hand movements to form the letters is most
important. It is very confusing for a child to be taught one way at home and
another way at school. Please put a capital letter at the start of my name only
eg: Kylie not kylie.
Knowing my ABC does not really help me read. It is more important for you
to read to me, listen to me and talk with me.
In order to be ready for school, I need to have developed my:
- Fine Motor Skills - hold pencil and brushes, thread items, manipulate
- Eye-Hand Co-Ordination - Threading, cutting
- Gross Motor - active play, climbing, throwing, catching, running
- Concentration - ability to participate in group discussions and
- Social Skills - able to cope with emotions, have ability to take
The 50 most important skills for children commencing school:
- Use the toilet independently.
- Follow verbal instructions
- Dress & Undress
- Identify/recognise own name in print
- Look after own belongings
- Share with peers
- Express/indicate needs/wants
- Hold pencil to make marks on paper
- Keep still for short periods of time
- Separate from parents at school
- Take turns
- Speak clearly
- Identify own school bag and belongings
- Open lunch box
- Use tissues
- Say their name
- Know to/how to wash hands after toileting
- Play with peers appropriately
- Respond to their own name
- Communicate with peers and teachers
- Ask and answer simple questions
- Use scissors
- Tie shoelaces (at least practice this lots)
- Write their own name in lower case letters
- Listen to a story
- Put things away after use
- Know common colours, shapes and numbers
- Listen to instructions
- Eat independently
- Participate in group activities
- Know own name
- Speak in complete sentences
- Adequate concentration span
- Listen to others speak in a group
- Awareness of why they are at school/keenness to learn
- Count to 10
- Show an interest in books
- Acceptable behaviour for school
- Show respect to teachers/adults and manners
- Ask for help
- Hold book and turn pages correctly
- Eye contact
- Share an adults attention with other children
- Recite nursery rhymes/simple songs
- Know address and phone number
- Be familiar with/use pencils. scissors, glue, paintbrushes
- Attempt drawing
- Fine motor skills
- Walk up & down stairs safely
- Accept correction/follow request appropriately
So there you have it. Interesting.
Thursday, March 26, 2009
We saw Dr L on Tuesday. I love this man. I feel very privileged that we are able to see him at all.
First appointment after lunch, 1pm - we arrived at 12.40pm left at 3.20pm. LONG day with the girls.
Isla has been sick with the 'flu for the last few days, and was particularly bad yesterday. Any smart mother probably would have not taken her out, but with the waiting list so long to see Dr that I just didn't want to cancel. I was pretty surprised when he said, "I haven't seen Isla for almost a year" Surely not?! I really should have waited around in October last year.
So, we're having botox. Still uncertain just how I feel about the whole thing, but that's secondary I guess. Isla doesn't know about it all just yet, and that's for a few reasons. 1. That I have absolutely no idea how to explain it to her. 2. I don't quite know what to expect and 3. It's not until June, I don't want her stressing about things until then.
June 4th we're booked in. Wish us luck. Her right leg is turning in quite a lot, all of us were really shocked to see just how much it tuned on Tuesday, even Ian and I commented to each other that we've never seen it that bad before. Thinking about it now, I think it may have been more obvious because she really wasn't very well. Today it's nowhere near as pronounced.
She'll be having 3 injections in total. 2 in the right leg, one in the left. Then will be in plasters about 3ish weeks afterwards (I think I heard that right). They said something about the gastrocnemius (thanks Google!) muscles. Wiki tells me that's the calf muscles. They're also doing hamstring on the right hand side. I really should learn all these proper terms for the muscles, then I might have some clue what they're talking about.
Only little doses of the Botox, Dr L said we may not see any difference (which makes me think, why bother) but he said better to start out small and increase as she needs it. It'll be interesting.
She'll have the injecitons under sedation, thank god. She'll have the nitrous oxide (laughing gas) and morphine as well. Dr L advises us to get hold of an anaesthetic mask so Isla doesn't freak out with it. Will see if Aunty Kate can hook us up with one of these.
Hip X-rays showed slight migration in the right hip, but nothing to be concerned about. Probably caused by the way her right leg is turning in. There was talk of theratogs, will have to investigate further.
We saw Michael the physio yesterday, and he introduced us to "Dynamic Taping". This funky bandage (fabrifoam) which is smooth one one side and grippy yet foamy on the other, which we wind around her leg, which helps to pull it out. It's awesome. Michael strapped her up yesterday over her orthotic and when Isla ran her leg was straight! Still pulled in a little when she walked, but a massive improvement. I showed Ian how to put it on last night and he was surprised by how well it worked. Will definitely have to stick with this!
Haven't taken photo's for a while. Will strap her up and take some pics today hopefully!
Sunday, March 22, 2009
Tuesday, February 17, 2009
Amanda from Swish and Swanky sent this beautiful gift to Isla, out of the kindness of her heart. Amanda is such a gorgeous lady, thank-you SO much! Bella, as Isla has named her, hasn't left her side since she arrived yesterday, she even came to swimming lessons and to the physio today!
The ballerina was knitted by Rachel from Knitwish on Etsy - you MUST buy one of her creations, they are so beautifully made.
Thank-you, thank-you, thank-you Amanda!
Isla started swimming lessons yesterday. She was freaking out before we got there, saying she didn't want to go in deep, and she didn't want to put her head under the water. She has been terribly afraid of water since NYD 08 when she was in an inflatable backyard pool at the IL's place.
I was down the back taking photo's of my niece and nephew, FIL & Ian were in the pool with her. Both boys got out of the pool and left Isla in there, thinking she was holding on to the side, she tried to walk across the pool (the water came up to her armpits) and she slipped. I came up from the back and saw her completely under the water, on her own and trying to get up. I didn't know how long she'd been under, single-handedly the scariest moment of my life.
Putting Isla into swimming lessons is something I'd been meaning to do for the longest time, but I finally decided that we've wasted enough time and made an enquiry at the local swim school. As luck would have it, there is another girl at the pool having lessons who has Spastic Diplegia too, and her mother agreed to Isla joining the lesson (which saved her $35 a lesson!). The other little girl, Sarah, is gorgeous. She is 6 and can swim freestyle and can almost do breaststroke. So great to see another person with the same condition as Isla, it gives me great confidence in what Isla will be able to do.
Isla loved the lesson by the time it was over, she was scared when she first went in and kept calling out, "Mama, I need you!" in a very high-pitched screetching voice! The instructor, Nicole, had no chance getting Isla to blow bubbles, and I thought we were going to be in for a loooong lesson when Isla asked me to give her a towel and wipe her face because it was a tiny bit wet!
But, once the teacher took Sarah for a little paddle, Isla very slowly put her face in the water and started blowing bubbles! And the rest, as they say, is history! She was floating on her back with the instructor, and even tried diving in!
When the lesson was over and she was out of the pool, little teeth chattering away, she said "I want to go back in the pool" LOL
She even insisted on wearing her swimming cap home and plans on taking it to show Michael her physio this afternoon!
I have some video of her using the kickboard too, will upload it shortly. I am so proud of her, she was so incredibly scared at the start of the lesson, and now she can't wait to go back!
Sunday, February 15, 2009
Isla was so excited on Saturday to be going to her first dancing lesson! The teacher told us she had to wear shorts and a shirt, and she was very upset that it was cold and raining and I made her wear trackies!
We got there at 11am, the teacher said that they do 45 minutes of dancing all up, 15 minutes of ballet, 15 of jazz and then finish with 15 of tap, but suggested that Isla may have to sit out the tap as it might be a bit difficult for her.
Anyway, when we walked in the hall, the teacher told us that we were late! The other teacher gave us the wrong time, it actually started at 10.30 so we missed the dancing that Isla could do. They told us to sit on the stage and watch the tap, and that upset Isla so much, she didn't understand why she couldn't dance, so I told her to stand up and do what the teachers told the girls to do.
She tried really hard, but couldn't quite get the heel down thing that they were doing, but I can see that it will be a very good thing for my little toe-walker! She spent all day yesterday walking around going over the entire lesson!
I have to go and buy her uniform this week, I can't wait! She's going to look beautiful!
Swimming lessons start tomorrow, I've asked Mum to go in the pool with her, I can't find my cosie. She's freaking out already about going under the water, so I'll tell her teacher about that when we meet tomorrow.
We're so busy these days now, Monday is swimming, Tuesday is physio, Wednesday & Thursday are kindy, and Friday is OT and Saturday is dancing!! At least OT & Physio aren't weekly!
Will update tomorrow with how Missy went in the pool!