Tuesday, April 28, 2009

Tiffany & Co.

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

2 weeks.


Enter panic attack.

Today while in my favourite ever store, Sparty's, I received a phone call from Dr L's receptionist.

She told me that Dr L wants Isla's botox brought forward from the 4th of June to the 7th of May - which is in 2 weeks time.

I said "Of course, we'll be there" and hung up. I didn't think to ask any more questions.

2 weeks.

I couldn't concentrate on anything from that point on. I browsed the aisles aimlessly while trying to ring Hubby to get him to cancel the day off he'd put in for June and ask him to bring it forward to the 7th of May.

Hubby said there's no way he can get the 7th off as they've just authorised his RDO for the 6th of May as well as approving his time off in June.

Great.

Rang Mum to let her know what was going on and to see if she could look after Harper for the day. She said no problems. Relief.

Leave Sparty's empty-handed. This NEVER happens. Mind still spinning, this is all too quick.
I know I've been banging on about Botox for years now, but it's never been this close. I was just starting to come to terms with June being so close, but now it's 2 weeks away.

Breathe in. Breathe out.

I can't explain why I'm so petrified at the moment. I've known she needs it for the longest time. I missed my cousins wedding because we were saving up for it (before she was 2 where it's not subsidised) but she didn't need it. She was meant to have it last May, but I decided against it after all that FDA stuff with the deaths in the US.

Trying not to cry now.

Hope I can hold it all together for Isla's sake at the hospital. She'll be terrified if I'm upset, even more so than I expect she already will be.

Will see if I can get a gas mask to get her used to it. To get me used to it.

We see Michael on Monday. So much to discuss.

Monday, April 20, 2009



Where has my little girl gone?
My sweet little Isla, I love you so.


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

Ready for School?

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
situation.
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
share.

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
make sure:
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
    dough.
  • Eye-Hand Co-Ordination - Threading, cutting
  • Gross Motor - active play, climbing, throwing, catching, running
  • Concentration - ability to participate in group discussions and
    activities.
  • Social Skills - able to cope with emotions, have ability to take
    turns.

The 50 most important skills for children commencing school:

  1. Use the toilet independently.
  2. Follow verbal instructions
  3. Dress & Undress
  4. Identify/recognise own name in print
  5. Look after own belongings
  6. Share with peers
  7. Express/indicate needs/wants
  8. Hold pencil to make marks on paper
  9. Keep still for short periods of time
  10. Separate from parents at school
  11. Take turns
  12. Speak clearly
  13. Identify own school bag and belongings
  14. Open lunch box
  15. Use tissues
  16. Say their name
  17. Know to/how to wash hands after toileting
  18. Play with peers appropriately
  19. Respond to their own name
  20. Communicate with peers and teachers
  21. Ask and answer simple questions
  22. Use scissors
  23. Tie shoelaces (at least practice this lots)
  24. Write their own name in lower case letters
  25. Listen to a story
  26. Put things away after use
  27. Know common colours, shapes and numbers
  28. Listen to instructions
  29. Eat independently
  30. Participate in group activities
  31. Know own name
  32. Speak in complete sentences
  33. Adequate concentration span
  34. Listen to others speak in a group
  35. Awareness of why they are at school/keenness to learn
  36. Count to 10
  37. Show an interest in books
  38. Acceptable behaviour for school
  39. Show respect to teachers/adults and manners
  40. Ask for help
  41. Hold book and turn pages correctly
  42. Eye contact
  43. Share an adults attention with other children
  44. Recite nursery rhymes/simple songs
  45. Know address and phone number
  46. Be familiar with/use pencils. scissors, glue, paintbrushes
  47. Attempt drawing
  48. Fine motor skills
  49. Walk up & down stairs safely
  50. Accept correction/follow request appropriately

So there you have it. Interesting.

Thursday, March 26, 2009

Botox Clinic Update

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

Bad Mummy...

I have been SO very slack. I do genuinely come online to update Isla's blog but get distracted by Twitter *hides*

So, what can I tell you about Isla. We went and had a review by the paediatrician. That went well - it was very brief though. He mentioned that her therapists have all indicated that she is very intelligent. Height and weight all normal (although I didn't think to ask how tall she is now). Weighs 14.5kgs.

He gave me a phone number for a place called Rainbow Cottage to call. According to the Paed, 2 doctors, Dr W and Dr B would perform something they call a CAT assessment to see what sorts of aides etc Isla may need when she goes to Kindergarten next year (EEP!). I called the number but they told me to call a different number, so I did. Once I got hold of the people on the new number they told me I was out of the area and to call our local health service. So I call the local place at 12.58pm they tell me to call back at 1pm. How utterly irritating. Call them back and ask them to organise a CAT assessment for Isla - they don't even know what CAT stands for (neither do I!) and that they'll get an intake officer to contact me and help me book Isla into a local school. Can't be bothered explaining we won't live in this area next year..all too complicated. "Someone will call you back" they said. 2 weeks later, I'm still waiting.
Spoke to someone at the Spastic Centre. They gave me a number to call to join a parents group/morning tea?? type set up. Not sure that I'm ready for that. The thing is, Isla is mild - quite mild. We are very lucky. I would feel like a complete fraud to go to a parents of CP kids group and pretend that I know how hard it is for kids with CP - the reality is, I don't. I can't imagine the daily heartache and stresses that the parents of severely or even moderately effected children is like. My heart goes out to them.
We'll be joining a school starters group at some point in the near future, we're on a waiting list. I have a feeling the lady may have called me the other day, but I am locked out of my messages. Must call them tomorrow and see.
Botox clinic is on Wednesday. This will be interesting. We haven't had the botox clinic for quite a while, I can't even remember when the last one was, well, there was one in October but we didn't stick around because Dr L was running late and I was heavily preggers. I am quite looking forward to hearing what Dr L thinks about her progress. Must remember to take AFO's and hip XRays and Tap shoes - she walks really well in them!

Dancing, how she loves it. It's beautiful to see how excited she is about dancing - particularly the tap dancing. Parents have to wait outside for the 45 minute lessons, when they come out of the hall it's the cutest thing ever. As I said above, she walks surprisingly well in tap shoes, I think because they have a slight heel on them, and also because they obviously make a tapping noise when she makes a heel stirke. Thank god they're useful at $65 a pop.

Swimming lessons still going well. Mondays are her favourite day of the week. She can dog-paddle on a pool noodle, and went under water and paddled about a metre on her own last week, which she hated, but she did it nonetheless.
Will update again after Botox Clinic.


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