In January 2011, my husband and I welcomed our second little girl into the world, pure delight! She was as our first, a perfect little princess!
Looking over her bassinet one morning, I found her to be twitching all over, thinking that
was quite strange, I called for my husband, who assured me she was fine, we put it down to baby jerks, and perhaps a paranoid Mum. :)
Continuing with our morning routine it was almost an hour later that our baby, now seated in her bouncer, began
to shake! This time violent jerks that sent her arms and legs moving uncontrollably, it was a minute of our life that felt like an hour, her last seizure that day continued for 3 minutes and finally came to an end with medical assistance.
We are
fortunate to have an amazing person in our life and an amazing GP who supported us through the transition from home to hospital, during an extremely frightening time.
I will never forget that day! And I will never forget those who helped us through
it, I was certain things could not be worse. I look back now and think to myself if only you knew!
If only you knew what a sheltered little life you’ve had. If only you truly understood the pain of others. If only you understood
what it really means to be strong and courageous. If only you understood what love will make you do for another, and how the meaning of your life, the important things in your life, your priorities, concerns will change.
You will learn to be strong. You will learn not to concern yourself with the thoughts of others, you will learn energy is wasted on those who take yours, you will learn you cannot please everybody, the best you can do is be your best for those
around you, take each day as it comes never looking too far into the future, the little things are of real importance!each milestone to you may be minimal to another, however they’re your milestones, they're your joys, your tears, your
hopes and your dreams, be thankful for all you have, be thankful you are blessed with an extraordinary little family, who love and care for each other.
Our little girl has taught me so many of life’s lessons.
Piper has had little relief through medication, for the moment piper is taking six anticonvulsants twice a day, which have given her little more than two weeks seizures free, at her worst Piper had over twenty seizures in 24 hours.
On Piper’s last admission to hospital she stopped breathing; I think I felt the room spin that day! I can only remember my entire body shaking, nothing felt real, looking back it still feels as though it just did not happen!
It
was as though Pipers little body was shutting down, she had been extremely floppy, unable to move, and unable to swallow her own secretions, and there had been no smiles for quite some time.
After a short time in Intensive care Piper was transferred
to the Royal Children’s Hospital in Melbourne, where monitoring and testing continued.
It was at this stage Piper and I were separated, I was helped through my hardest day with someone to guide me every step of the way, those who crossed my path
I think of often, and know they were there for a reason. I arrived at the Hospital moments after Piper.
Pipers seizures had once again increased with the addition of turning blue, thankfully these seizures would last less than 5 minutes
and Piper managed to recover from them herself, Piper regained most of her strength in hospital although has regressed in some area. On leaving hospital we were given a bag and mask with the hope we’d never have to use it. The introduction of a
nasogastric tube ensures Piper receives an appropriate amount of fluids, as the ability to suck and swallow was also lost. If we were to look for a positive this does reduce the time in which it takes to administer medication, as this had become quite
a battle, as clever as Piper was to hold it in her mouth for such a length of time, the process was quite long.:)
Piper has been in intensive care numerous times, and flown to capital cities for emergency treatment, undergoing extensive testing
including lumbar punctures, blood tests, MRI, EEG, nerve tests, fluoroscopy , metabolic and genetic testing . Piper is as her Doctor’s say a complex case, the reason for her seizures is unknown, Pipers seizures present differently almost
every time , it is unclear which part of the brain the activity is coming from which only adds to their complexity.
Piper has joined the Monash University Research Program headed by Professor Ingrid Scheffer, in the hope a rare condition may be
discovered for the cause of her seizures, this allowing us to better understand and control her seizures, we know Piper has epilepsy, what we do not know is the underlying cause.
Piper frequents the Royal Children Hospital in Melbourne under the care
of Neurologist Michael Hayman and Simon Harvey, we have had the most amazing support in search for answers for Piper, we continue to seek answers and know we have the best medical minds assisting us.
We have decided to share our journey, as we
believe any awareness to bring our baby out of the shadows and the stigma associated with epilepsy, is a positive step for everyone. Piper is the strongest most amazing little person we know, and she like all living with epilepsy deserves to shine.
Ok..........So that’s our emotional roller coaster for the past 18 months! It would appear I had a little more to say than I had thought :)
Reading back on my post this morning I guess it’s good to finally say
how I feel.. excuse the ranting! I sat down to explain our journey and it all came pouring out! This was the first few hours I’d had by myself in some time. Piper and her Daddy had returned to Hospital to have her nasogastric tube reinserted after
Piper pulled it out for the second time this week, now that Piper is older and more aware this too becomes a challenge.
I continue to introduce a special feeding cup in the hope her skills return and we may finally be rid of that horrible tube.
Off to the Paediatrician today and then home for Physio, let’s see what the day brings :)
Piper has just had her 7am meds Phenobarbitone, Topamax, Clobazam and Zarontin and the little poppet is still happily snoozing x