Thursday, December 11, 2014

Quick Update...

It's been almost a month since I last posted and so much has happened.  At the moment I am completely exhaustipated (yup it's a word - even if I made it up it's a real word hehe) We have had 2 trips to Adelaide, numerous specialist appointments, therapy sessions, blood tests, EEGs, risks, diagnosis and head scratches in these last 3-4 weeks.

Miss A and Mr T have both had a genetic work up and have had bloods taken and sent off all around the world to see if there are any genetic reasons for their situations.  Toby is physically a perfect specimen of a 20 month old boy, but there are no obvious reasons for why he is not talking.  He is communicating, and very social and an absolute delight, but not one single real word.  He has attempts and has a few babbles, but no words.  He is carrying on his sisters tradition of stumping the medical fraternity so it seems ;)  His speech therapist is keen to have a sedated ABR test done (its for hearing) to completely rule out hearing issues.  That's not to say that if he passes it that it isn't hearing in a non-sterile world (basically saying background noises cause confusion with the sounds meaning he can hear but not really interpret or make out what he is hearing).  The general consensus is that it is to autism related, but my gut is starting to twitch at that possibility.. he has started head banging from frustration and biting, and when we lit up the Christmas lights he started running in circles and flapping his hands with excitement... not much in the scheme of things, but possible traits nonetheless.

Miss A, well.. Aerynn, what can I say?  lots of worry and concerns there due to her headaches escalating to migraines and now seizures.  She has seen a neurologist and had an EEG which came back clear - however, he still suspects she has epilepsy, something called a partial absence seizure, which apparently don't show on EEGs.  We are to try and record the seizures she is having and sent the video to him for confirmation.  Once has has this she will start on medication.  The other possibility isn't so nice... she is being booked in for a sedated MRI early 2015 to rule out a possible brain tumour.  The dr reassures us that her pattern of migraines etc is not indicative of a tumour (phew) but it needs to be ruled out for our peace of mind.  In the meantime we are to keep her on her current meds and connive keeping records of her headaches and episodes.  We may even be able to wean her off the meds in a few months time if she has no more migraines (and MRI etc are clear)  so some positives there :)  

The rest of the family is as per normal... a group of 3 hormonal, surly but sometimes amusing teenagers who have completed their relevant schooling years.  Mr W has graduated primary school this year and onto high school next, Mr A has completed Middle school (year 10) and took out the grade IT and Woodworking achievement awards (Yay!!!) he is into senior school next year and pulling out all stops to get into the uni courses he wants to pursue.  

so that's a quick update... sure there's been other messes, laughs, tears, tantrums and giggles in and around... but like I said, I'm exhaustipated and my brain is completely fried so trying to remember everything is a stretch too much for this old duck at the moment ;)  

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