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.

Very exciting.

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.

FAMILY HISTORY:
Was your child born in Australia? Yes.
What languages are spoken at home? English.
Mother's details.
Father's details.
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.

MEDICAL HISTORY:
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?

DEVELOPMENTAL HISTORY:
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.

FEEDING HISTORY:
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.

BEHAVIOUR:
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.
Childcare/Preschool/School Attendance?
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 26, 2007


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


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


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


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


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


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


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


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

Wednesday, 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!

Monday, February 27, 2006


Latest update from Isla's Paediatrician....


He's still concerned about the tone in her legs, and seems quite concerned that Im not a blubbering mess, it's as though he feels that Im not taking it seriously :S


Well, little Miss has FINALLY managed to GAIN weight!! WOOT WOOT! She's now 8.4kgs! The heaviest she's been since October 2005 :D


Other news, we have to visit a Paediatric Eye Clinic with Dr H. He's from Westmead Children's and is apparently very good. Im not sure exactly why she's being referred to him. Paed said something about "just checking her field of vision" but didn't say why...hmmm.


We are also waiting a call back from Dr A who is one of the top Neurologists. He's from the Sydney Childrens Hospital at Randwick, and he spends 1 day a month at Campbelltown Hospital. Apparently the wait to see him is quite long, so we may travel to Randwick to get it over and done with. Isla will be sent for an MRI to see what damage there is to her brain, despite the CT scan coming back all clear. She has to have a GA for this, so it won't be as stressful as the last visit to hospital for her, poor little mite.


I think that's all for now...((((HUGS)))) to all

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...