Friday, August 20, 2010

Botox, Building and Big Milestones

Its been a busy few days in our house.

Busy with building, because work on our ramp has finally begun! Ashlea has discovered she can crawl all the way from the back door to the middle of the yard ALL BY HERSELF. Unfortunately we still have that bat shit situation going on so it isn't ideal for her to be crawling around on the ground. However once that problem gets solved she - actually all of us - will be very happy. Sadly it will be costly for me as she is going to wear through many pairs of pants crawling across the wood and concrete.

We have also been busy because Ashlea had botox today - her 3rd series of injections. They did the same muscles as last time (hamstrings and calves). When they examined her they noticed that the muscles at the front of her legs were showing signs of spasticity, but as she is still able to crawl and move freely they didn't botox them this time, but they did say she may need those muscles treated in the future.

I asked the doctor another of the 'hard questions'.  Even though I know that Ashlea is unlikely to walk, I still felt the need to ask "Will she walk?".  I have accepted that she won't, but then she keeps surprising me with her achievements, and so I have started to wonder... maybe... what if .... should I get my hopes up???  The doctor's feeling was that as someone with a GMFCS level 3 cerebral palsy, she could possibly walk with a walker, but not independently.  Which is what I expected him to say.

And you know what?  I'm not disappointed with his answer.  If (and that is still a big IF) she could learn to walk with a hand held walker - and if she could use it for a reasonable amount of time, that would be a HUGE achievement - something that no one would have predicted for her.

Funny how your perspective changes.  Once upon a time I would have been devastated to hear that her only chance of walking was with a frame - now I think that if she can master walking with a kaye walker I will be over the moon.  I'm still not convinced it is a realistic goal, but we are going to aim for it anyway!!

And now for the Big Milestones of the week.

Firstly, Emma has lost her first baby tooth.  It's very exciting and I have to remember to play tooth fairy tonight otherwise there will be a very sad girl tomorrow morning.

Flattering photo I know - I'll start save for her therapy now.

But the really BIG milestone of the week, is that Ashlea pulled herself up to standing ALL BY HERSELF.  Well kind of all by herself.

If an adult is sitting on the couch, Ashlea can crawl over and push up on the couch / pull on the adult's jeans and get up into a standing position.  The first time she did it was for my mum, so I didn't quite believe it (aside from being miffed that she chose to perform such a huge milestone for someone else).  But later that evening she did it again.


You can see why I keep wondering if I should get my hopes up can't you?  Who would have thought she would be able to do that???

I tried to get it on film the next day with no luck (that is how I discovered that she needs someone to sit on the lounge to help her stand up).   I was standing up filming her and she just couldn't get up, but as soon as I gave up and sat down on the couch she came over and was able to get up.  I'll try and get it on video for you over the weekend!!!  For the time being you'll have to be content with this dodgy snapshot!

Excuse the pants falling down - she often crawls out of her pants!


Sarah said...

The ramp is looking great! Hope you can find a solution to the bat crap!

Hope Ashlea has more great results from this round of Botox.

I am so very proud of Ashlea for her new milestone of pull to stand (even if she needs someone there) it is a fantastic start!

I think it's fair to wonder if she will use a kaye's nice to have goals...I agree that she has amazed us thus far, she really is an amazing girl!

Thanks for the photo, it's great to see her in action and hope you do manage in the next few weeks to get it on video!

Alicia D said...

Yay!! thats really awesome:)

E. said...

Well done Ashlea! Great work on standing. Very cool idea to use an adult to help.

Cathy said...

What wonderful news and I definitely think that walking in a Kaye Walker is not unrealistic at all. Once Bella was able to pull herself against the couch (about 6 months ago) it made a big difference and i think also gaveher motivation to want to get upright..
Keep believing

Marie said...

Ashlea is amazing! Hope you have fun as the tooth fairy!

Anna said...

Yay to Ashlea and her pulling to stand!! And for crawling all the way to the back door!!

I say never ever give up hope of her walking. We were told that Ryley would never walk. Not even with a walker. And now he walks independently (it did take him until he was 7 years old though!)
So if Ashlea is pulling to stand, then the next step is cruising around furniture.

Hope the tooth fairy remembered to visit Emma!!

Belinda said...

It is fantastic!!!!!

Good on you Ashlea!!!!! xx.

ANewKindOfPerfect said...

Look at her standing up! That's awesome. :) My daughter did that one time - grabbed my legs while I was sitting on the couch, and stood up. That was it, just one time .. probably a year ago. She will stand up if you hold her hands and she's on the floor, but she refuses to just pull herself up on anything else. I hope Ashlea continues to perfect that skill! The crawling out is amazing too, although hard on the pants. :)

I understand 100% you emotions when you asked the doctor about the walking. Honestly, if my Emily ever can walk unassisted with a Kaye Walker, I will be elated!! She walks all around in a gait trainer but not a reverse walker. We just got the Crocodile one, and she just stands there and won't move. So I get it! If she walks with a Kaye walker but never all by herself with nothing, I would be so happy. It wouldn't even matter that she had the walker behind her. :)

Sammy Apple Love said...

Awwww How exciting!! Reading some of your posts and seeing how Ashlea is accomplishing so much really brought a happy tear to my eye. It's amazing when things like that happen. :)

TherExtras said...

2 significant milestones! Count one for yourself, too - you are emotionally stronger.

See if this post helps put words to what your child can do:


Big brother, Little sister. said...

Alison, great pics! Congrats to Emma on her first tooth being lost! The ramp looks awesome and I am hearing you on the pants! we go through heaps too! It is funny how expectations change as you become more at ease with having disability as part of your normal life :) What about tucking a towel into the back of the couch so that Ashlea has something to grab onto?