Monday, July 19, 2010

It's been forever since I posted.

Isla had botox on the 7th of June and was so so brave. The anaesthetist was running late and Isla was the 5th kid on the list so didn't go under until 1pm, she was SO hungry, poor little mite. Hamstrings and calves injected {one day I'll actually learn the proper names of the muscles}. She was pretty nauseas when she woke up so had something put in the cannula to make her feel better, then proceeded to down a cup of hot chips in no time at all.

Isla continues to amaze me whenever she has to go to an appointment like this. She never complains, in fact she was actually excited to go and kept talking about her sleeping mask. I think that if she were to know what actually went on with the injections etc once she was asleep it might be a different story.

We were meant to go to Dr L for a post-botox review on the 6th of July, but Ian's Mother passed away suddenly that morning, so I haven't been able to organise another appointment for her as yet.

She had her serial casting on the 9th and had her measurements taken by her physio, Michael at the hospital - we've finally managed to get into the hospital for physio & OT which will save me almost $5,000 a year. Michael said her response to the botox was "really good" and that she'd only need 1-2 weeks of plasters, not the 3-4 we initially anticipated due to her high tone. So, after one week we went back and had them removed {she chose purple this time} and Michael was so thrilled with her response that she didn't need any more plasters!!!

The most exciting part of this is that Isla doesn't need to be in plasters when she goes back to school tomorrow. Awesome.

We have a long term wheelchair trial at the hospital on the 26th, which I am pretty apprehensive about. I have no idea how it all works, and the idea of her being in a wheelchair frightens me, but she's excited about it. The wheelchair rep is coming out to meet us at the hospital...I think...

What else?

Isla's school report came the last week of school and I am so proud of her. She was above average in everything ♥ She loves school so much, has made so many friends, I am so so proud of her. I sent the book "Nicholas Nigel Norris" to school with her when she went into her Orthotics, and the teachers have sent it all around the school, which has been really positive. Actually, it's still there, I'll have to chase it up!

Isla's still scared to be at school in the playground. There are almost 500 kids in such a small {concrete} area, she's terrified of being knocked over. Ian and I plan on speaking to the Principal about this asap. Poor little mite.

Dr L wrote a long letter for Isla in the hopes that she'll qualify for more aide funding at school. At the moment she's only receiving 3 hrs per week, but most of that goes to sport {!!} I'd rather her have standby support at recess and lunchtime. We'll see what happens there.


Anonymous said...

Yay an Isla Update...

Great Isla's Botox had a great response and in turn not as long in her plasters!

Hope the wheelchair trial goes as well as it can.

Oh I will have to have a look at that book you mentioned, haven't heard of it before.

Sorry to hear about Ian's mum...seems the 6th July (my b'day) wasnt such a good day for your family or a friend of mine who lost their daughter to hydrocephalus. Big hugs to you all xxx

Hope the letter from Dr L helps Isla's funding situation.

Ally {mtm} said...

Sarah, the book came from the CP Society of WA {I can't remember what it's called, but the WA equivalent of TSC} It was only abut $20 I think, and so worth it.

I'm happy to send you our copy when I get it back from school? I'm sure it'd be great for Violet when she goes to school next year.

PS Happy belated Birthday xx

Alison said...

So lovely to hear of Isla's progress - sounds like she is doing amazingly well at school. I hope you find a playground solution - I can understand her fear of getting knocked over!

PS Sarah - I have a copy of the book somewhere...I can show it to you next week.

Belinda said...

Very happy for an Isla update!

Great response with the botox, and it's so good she loves school!