The Power of Love and Support

It's almost 4 weeks since my baby girl had her first seizure.  I still don't like them...naturally.  Who could say that they like watching their child's body racked with spasms that they are powerless to control?  It's been an odd few weeks.  I've had feelings of fear.  Fear of the seizure, fear of the unknown and believe it or not there have been times when I have experienced fear of Ayla.  I know that sounds really quite strange but when you don't understand something and you don't know how it will show itself or when, then fear seems like a completely normal reaction.  Isn't that the way it goes with spiders and snakes??  We don't really understand a lot about them but we know they can bite and make us sick.  We just don't know when or how or what will set them off.  Doesn't seem so crazy now, does it?

I've experienced anger too.  Anger at the Polymicrogyria mainly.....ok, maybe a little anger at the universe too but that way no-one feels left out....it's all encompassing.  And along with anger always seems to be frustration.  Those two seem like pretty good buddies.

But then I look around at all of the amazing support that we have had.  I know you have all felt that you wanted to do something to help....but honestly, you couldn't.  Not physically anyway but we have felt your love and support and felt that you were all right there for us if we needed to call.  There were 3 things that picked me up off the floor.  My Mum (but you probably knew that!), a text from my cousin Bec, who managed to say all of the right things and support from somewhere that, although I knew they would be supportive, I didn't expect the level of support we received and I could never have imagined how that support was going to change my feelings and my reactions to a seizure.  That support came in the form of a 1 hour audio file from ABR's founder and Champion to hundreds of families of children with disability across the globe.  Leonid Blyum you are an amazing man.  You have created a therapy for our kids that truly works, you devote your life to bettering that therapy and bettering our kids lives and through your audio file for 'Team Ayla', I came to truly understand your depth of care for our kids and their families.

Leonid's audio file allayed my fears of seizures by helping me to understand them and to understand exactly what has been happening for Ayla in the lead up to her first seizure.  He reminded me that in reality, nothing has changed.  Yes, she's having seizures....but we always knew that it could be part of the picture.  But nothing has changed.  We are still her carer's (Professional Carer's, as Leonid likes to call us), she is still our child, she still needs help with absolutely everything.  The seizures just extend our role as carers.  Leonid also validated everything that Steven and I had put into place for Ayla.  We know Ayla better than anyone and although we were suddenly part of this crazy new world where we had little to no understanding, we still knew her best.  We took a few steps back, wound down all the craziness of our lives, encouraged rest and napping with Ayla, took some time off school and nurtured and nourished her.  Leonid confirmed our methods by saying that we needed to step back to 'baby time' with Ayla for a while.

So, in the last few weeks we have taken that dreaded but necessary step toward medication for Ayla but we haven't left it there.  I'm throwing absolutely everything I have at this sucker.  I've done my research and I'm treating Ayla as if she were any other patient that I see in the clinic.  I have put her on Anti-convulsant herbs, supplementing minerals that are known to be depleted during seizures and she has been on a new nutritional program (the GAPS diet) for almost 3 weeks now and she's thriving on it.  She loved her food before but now she LOVES her food!  In the last couple of days we have seen some really positive changes with Ayla's daynaps lengthening back toward her usual 2-3 hours (25 minutes was all she could do once the seizures started), the seizures are changing and even skipping a day here and there, and this morning....she slept in!!!  Let's hope she no longer feels the need to greet the birds as the waken each morning.  She's looking more rested and relaxed and is back up to mischief again.

Broken

It's been a really long week and a half.  I feel like my entire world has just crumbled in my hands.  My last post was so upbeat and full of excitement and yet just hours after posting it, we have been dashed against the rocks and set adrift.  I don't even know what to write......

Ayla's condition is known as Polymicrogyria and her 'version' of it is called Bilateral Frontal Polymicrogyria.  We have always known that seizures were a part of the symptom picture for around 80 - 90% of people who have this condition.....but she's 6 years old and never had a seizure.  We thought we were home free.  At least we hoped like crazy that she was.  And now all of that hope is gone.   So far she's had nine and despite having to go on Epilepsy medication they don't seem to be letting up yet.  Every damn night I watch my baby girl's brain rack her little body with spasms and turn her beautiful innocent giggle into something that is sinister and dirty somehow.

At the risk of sounding like a spoilt child......It's not fucking fair!  She already has so many struggles ahead of her.  It's not fair that she's forced to face this too.  She looks so frightened.  We're all frightened.  I feel like I'm either going to lose my beautiful happy girl to constant seizures or I'm going to lose her to strong medications that bomb her out and take away her laughter.

I know everyone says I'm strong but I don't want to be strong.  I want to scream and shout and yell and cry and tell the universe that it's not playing fair.  I want to swear and punch something.  I'm so over watching her constantly struggling.  I'm tired and I'm burnt out......and I'm broken.

ABR Workshop August 11, Improvement #1

We're back!  It has been a crazy busy weekend and I'm knackered....but we're back after a fabulous assessment and workshop.  Ayla has made really great progress with her structure and we seem to have gone to the 'next level' in her ABR journey.  I think we knew that might happen.  Ayla's decision to begin spontaneously standing up did kinda give it away.... The standing was the signal that her body had made enough structural changes to be able to achieve and maintain the standing and now it seems there is no stopping her!

To the naysayers out there that weren't sure if we were being ripped off!!  I am currently thumbing my nose at you all....in a polite manner, of course :)  There is ABSOLUTELY no way that Ayla would ever have achieved this without Advanced Biomechanical Rehabilitation and without the years of commitment and hard work, not just from myself and Steven doing the therapy, but from everyone who continually puts themselves out there crafting week after week, running market stalls, organising events and especially those of you who have made considerable and extremely generous donations to aid Ayla on her challenge.  You all know who you are....and we thank you from the very bottom of our hearts....and Ayla does too, from the tips of her little standing toes!

We have a whole new set of exercises to do so that we can consolidate Ayla's changes and begin making some new changes too.  There is still a very long way to go but standing up has definitely opened the way and made the idea of Ayla walking, much more than just a possibility.   There's even an exercise that might actually benefit me too (whilst doing it on Ayla, no less).

So, let's get on with the changes....

Ayla's Comparison Assessment started a little differently for us this time around.  We normally charge straight into the structural changes but this time I was given a little mini-workshop on "The Key Elements in Mobility".....yes, you read correctly.....MOBILITY!  See, I told you walking is on the map now.

Clearly, the 2 pictures below are not Ayla.  They are being used for demonstration purposes. And here is an extract from the mini-workshop....to help you understand what changes have been made in Ayla's structure that are now allowing her to stand up.

Functional mobility needs the integrity of the upper body and it requires the following prerequisites:

Integrity of pelvic girdle

Integrity of vertebral column

Integrity of shoulder girdle

Any compromise of the above factors would affect the walking performance.

Once the upper body is strong enough to hold by itself, both legs would then be able to act as pillars through which the ground reaction is transferred so that he/she is able to step on one leg and the trunk would not sink, tilt or twist and at the same time he/she is able to swing the other leg. 

Without these 3 factors, functional mobility would be at best compromised and the child has to resort to his motor intelligence to perform at best mediocre movements under all the constraints and deficiency. 

So, it seems Ayla now has the beginning of these 3 factors. 

Improvement #1
This picture was taken at the November 2010 workshop.

 You can see in the photo the way that Ayla slouches forward and to the right.  This used to be her regular sitting position and we have been quite concerned about her developing a nasty scoliosis.

And this is August 2011!  Sitting straight and tall....No Slouching forward or to the right!  She will still slouch a little when she's tired...but really, who doesn't?
The photo below was taken again in November 2010.

You will notice her slouching forward with quite a rounded spine.

And this is August 2011....Spine is much straighter and far less slouching.

Both of these improvements demonstrate that her vertebral column is strengthening and the photos taken from the front also demonstrate an undeniable improvement in the segmentation or division seen between her abdomen and her thorax.  Segmentation and division are important for being able to control and segregate the movements of the different areas of the body.....something that you and I take totally for granted.

There you have it....improvement #1 done and dusted.  I'll put up another soon.....

If you are a parent or carer of a child that you think ABR may help and you've been loitreing here for a little while....I know, I did it too ;)....feel free to contact me if you would like some more information.  Happy to help!

ABR Bound

We are ABR bound this Thursday.  It will be very interesting to see what progress Ayla's little body has made over the last 9 months.  With Ayla finally standing up on her own....I'm hoping for a fabulous report.

See you on the other side.....