Hope Love Cure

Reflection

25th April 

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! 
Pipers daily 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.
Returning home 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 further testing, 
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 
 

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Liz Knott | Reply 05.05.2013 13.15

At times, life can be so unfair. Sending love and prayers your way. Thank you for sharing. xx

Sal | Reply 05.05.2013 05.23

The strength you demonstrate in navigating the ever-changing & the uncertainty is truly inspiring. We all hope you find answers & with those - treatment. xxx

Pru | Reply 05.05.2013 05.03

My heart just aches reading your reflection.... Your maternal bond, spirit and energy are all she needs to feel safe, and mate - you are nailing them all. Pru x

Katy Hodge | Reply 05.05.2013 04.05

oh summer pipers story is such a sad one, but her and her family show such strength. it really is inspiring. I hope one day you will find the answers you need x

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Latest comments

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
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07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

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06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

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13.10 | 11:42

Love yo piper to the moon and back

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