Saturday, January 28, 2012

Communicate Me!

Last Wednesday we had a visitor at our house. Another therapist to 'evaluate' Ayla. I never look forward to Ayla being 'evaluated' as I am never sure what they are going to say. But this turned out to be a pretty good meeting. 2 ladies, one Ayla's speech pathologist who doesn't have a lot to say (she's either shy or she is deferring to the other lady), and the other, another speech pathologist specialising in augmentative communication.

JACKPOT!!!! .....*little sing song voice* 

Wow wow wow! Now this chick knows her stuff! She had Ayla completely worked out in half an hour and I actually agreed with everything she said. She's is really encouraged by Ayla's communication ability and thinks that developmentally, she's somewhere between 1-2 years and is what she calls an Intentional non-symbolic communicator to an early symbolic communicator. I know that sounds like jargon, but to me it's like music.

Long story - short......this lady has put together an incredible plan for Ayla's communication this year that has me really excited and she wants to train Ayla's new teacher and Ayla's carer, Joan, for me. If you have a child with communication'll be hearing that music I was talking about. YAY! The teami have together for Ayla this year is going to be awesome......and I'm not letting them go! Their asses are MINE!!!

The video above is Ayla's communication with me tonight .......let's see where we end up!

Wednesday, January 25, 2012

A debrief in the wee hours

The year of the dragon has begun with a bang....and not the sort that I would like. It's 1.30 am and I'm sitting here next to my sleeping child, listening to her breathing, just in case she stops. She has just experienced her biggest seizure ever and it's left her exhausted and me completely freaked out. Since these seizures started last year (August), she has only had 4 or 5 seizures that Steven and I refer to as 'the big ones', the rest are nightly and are almost non-events in comparison. They are not, of course, but when you compare them..... From the both of us sleeping soundly in our respective beds to a noise and a crack as Ayla's head hit the end of the bed, sending me racing into her room just next door. Ever noticed how far away your child's bedroom seems when you need to get there quickly....her room is right beside ours but it felt like a 100m sprint. The seizure began like most others. Back arching, jerking, noises of frustration......and quickly escalated to not breathing, continuous spasm and deep groaning......and my heart pounding in my throat. The spasm stopped and I waited for the aftermath that usually follows....but then the spasm started again.......and again.......and again. Fear and panic started to take hold as I raced down stairs and across the kitchen to her emergency medication. "Fuck! Why aren't these in our bedroom?"....because when this type of seizure happens so infrequently you get complacent. I should have known, I've been watching it building for days. They say this stuff (her meds) works in seconds but it took minutes. Minutes and minutes......long, agonizing minutes. The seizure changed straight away but the constant ticks and teeth grinding that followed went on forever. These drugs are supposed to knock her out - that's why I'm watching her breathing - but they don't seem to affect her that way. They make her agitated and restless. I'm so thankful Ayla and I started in a Steiner play group from her birth. Song soothes the savage beast....and I don't think I would have known any soothing songs if it hadn't been for play group. From the description, it probably sounds like the whole thing was over in seconds but, in truth, it was closer to 15 minutes. Did I say minutes? It felt like hours.... If you're asking yourself why I'm sharing something so personal......what else do I do to debrief? I don't know how he does it, but Steven always seems to be working when the big ones hit. I doubt that there will be much in the way of sleep tonight.

Tuesday, January 17, 2012

We Watch, We Wait, We Try New Stuff

It's been so long since I have blogged....with Steven being away at college and my work picking up something had to give.  But Steven is home now.....and I feel a need to write a little something.

We have been asking the question for months now, "Is Ayla having seizures or not?"  We thought Yes....and then we thought No.....and now we KNOW that Yes, she is having seizures. 

Around 6 weeks ago we had an overnight hospital visit for a Sleep EEG and a phone call from the paediatrician this morning confirmed that they are in fact seizures.  I feel 2 things about this....

2.  Well, wasn't that lucky that Ayla had a seizure while she was hooked up.

Both of these were not the reaction I was expecting even of myself...but there you go.  What are ya gonna do?

So we keep doing what we're doing and trial a new medication....cos clearly the last one isn't working!  Poor kid is still having nightly seizures and we have noticed a little activity during the day for the last week or so which is highly unusual as her seizures are normally associated with her sleep....double bugger.  So we watch, we wait and we try new stuff.