I feel I may have set my expectations a little too high, for a moment I let myself be swept away by the possibility that something life changing may happen, and for just a moment it did!
seizures decreased and for almost two weeks she slept soundly without interruption, then slowly they crept back,! first through the night and then increasing stronger, more aggressive throughout the day!
It's as though we've traveled back
to the beginning, robbing Piper of her strength and smiles.
during our last visit to the RCH this was noted along with pipers rapid weight gain, considering the contents of Pipers meals this is hardly surprising, continuing on this way
would obviously do more harm than good, after some recalculations and discussions amongst neurologist and dieticians, Pipers fats and carbs were reduced and protein increased in the hope to stabilise ketones, and indeed seizures.
we felt refreshed, satisfied that this would surely put us back on track to the elation we felt only a fortnight before.
Since returning home piper's meals are mainly fluid, Piper will clench her teeth and close her mouth to any puréed
food offered, Piper is once again experiencing seizures that quite literally leave her breathless! One moment Piper is rolling happily, the next she is motionless with her face to the floor, she is floppy, blue, silent and we are again unable to do anything,
except wait for the next breath.
This type of seizure has displayed for the past week, during the last two days Piper has had more than twenty seizures present this way,
Piper will sit still in her pram looking
at toys, finding difficulty in moving her arms to grab them. Piper can hardly hold her head as I brush her hair, nor can she assist when dressing, Piper has always had low muscle tone although in the past displayed undeniable spurts of strength and energy.
I must remind myself it's early days! for two weeks something was working, we'll find it again! I just wish it didn't feel as though we were going around in circles.
Sat 27th -off on a quick trip, the day began with
a bright and happy little girl, three short seizures through the day and five throughout the night, a few sniffles and a little cough!
By the time we reached home she'd managed 25 seizures in 15 hours running a temp of 29.5 quite
lethargic and vomiting, after three additional seizures in a matter of minutes, we were off to our local hospital, worried about the rapid increase in seizure activity, although quite aware her little body was indeed fighting something, our concern turned
to Piper's upcoming surgery, as we've been on the list for quite sometime, and if Pipers usual reaction to illness is anything to go by, we'd be in need of antibiotics early to hopefully decrease the amount of downtime and possibility of having surgery cancelled.
Piper is having surgery this month for a PEG a more permanent solution to the Nasogastric tube, assisting Piper with feeding and medications, a skin biopsy will also be performed whilst piper is under anaesthetic, this may be used for future
My husband and I are aware the answers may never be found for Piper, in the past we've entered hospital wondering if we'd leave with our little girl, we've been told cases presenting like piper start to regress and usually
never regain the strength once had before, they will deteriorate resulting in death, we've also been told a life expectancy can not be determined as quite obviously Pipers underlying condition remains undiagnosed, however twenty years of age may
be generous for similar children, we've been told many things although nothing is certain, and as we sit here with a sick little girl whose sparkle has gone from her eyes, we cant help but reflect on those moments that have been pushed so far from our mind..
After a couple of days in hospital and numerous investigations assisted by bloods, a chest X-ray, lumbar puncture and an antibiotic injection we are home once again, thankful the infection is only viral and the temp along with
vomiting has subsided, seizures have also decreased, I just wish my baby didn't have to go through so much each time she's unwell, I've gone from a mother who could not bare to see her children receive their vaccinations, to a mother who holds her screaming
baby down along side nurses, while she received a needle in her spine! The irony! ...
Since returning home Piper has had very few seizures throughout the day however nights are horrible, once again we're awoken by a deep
gasp and a frightened little stare which leads into a seizure.
resting peacefully next to me I notice her little hand holding my arm, whether intentional or not I hadn't realised she'd fallen asleep right beside me holding onto me :), as I
watched thinking how lovely, her hands sprung outstretched, her eyes wide, her legs shaking! I wish she could sleep! I wish we could have those nights of waking wondering why there'd been no interruption!. I wish I'd known better than to get my hopes up! I
wish I knew how to fix my baby girl, this blog is probably suggesting I need sleep! It's been a crazy few weeks so I will try to switch my thoughts off for now. x