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!
Tuesday, November 17, 2009
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.
What else.
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
Ugh.
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.
CURRENT CONCERNS:
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.
HEALTH INFORMATION:
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.
DEVELOPMENTAL HISTORY:
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.
AGENCIES INVOLVED:
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.
RESULTS:
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
SUMMARY:
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.
Happy Days.
As expected, Isla went into plaster on her right leg again - to help maximise the stretch in the muscles while the Botox is taking effect. She stunned us all by picking green plaster, we all expected her to go with pink or purple.
She's such a trooper, I can't remember how many times she's been in casts now, and she never complains.
Pics to come soon.
Labels: Assessment, Botox, physio, Serial Casting


