Hope Love Cure

Sometimes we fall

We fell from our comfort zone this week by small seizures, spasms that would strike each minute continuing for days, 

We reached our maximum in emergency medication, drugs designed to stop, suppress and slow down a cluster, 
Pipers breathing became shallow, her skin pale, secretions uncontrolled and seizures remained! our lifeless little girl became in need of intervention. 
the spasms we've seen before, the difference, there is no break in this cluster, I worry about the effects of each little misfire in the brain, 
sometimes it's the continuous small seizures which cause the greater damage, pipers emergency medication nor the loading dose the hospital provides are able to slow the seizures, the nurses reassure us we've done all we can from home, piper then receives triple the amount of her usual medication and still the spasms continue, bloods are taken and return clear of infection, why is this suddenly happening. 
Today (Tuesday) finally there' s a smile, there's a spark, there's Piper, Yet smiles  are overtaken by a continuous cluster of interrupting little spasms, this afternoon another maintenance dose which again sends piper into a deep sleep, finally a little mind at rest. 
until eyes open wide ...... 
By Wednesday we continue to grow anxious if only we were in Melbourne perhaps then we could see this activity on an EEG locate the areas that are firing in order to gain some type of control, perhaps a clue into the mystery that is this syndrome, finally our concerns are heard after we inform our local paediatrician of Pipers current status, it's now eight days since this seizure type presented, five days of constant continued activity and no control! We've medicated so highly now, And little has changed 
It's been a difficult week
Today (Thursday) we finally arrive at the Royal Childrens Hospital our safety net.
We find a moment to catch our breath, as our little girl is finally where she needs to be.πŸ’œx  

Write a new comment: (Click here)

Characters left: 160
DONE Sending...

Ros Davis | Reply 21.06.2015 09:16

Hoping that Piper is improving. Thoughts and love to you all.
Ros Davis

Elaine Steel & family | Reply 20.06.2015 18:11

Praying for little Piper that her health will improve. At least she is in good hands to manage her. Thinking of you all
Lots of love
Elaine,Peter & Michelle xxx

Kellie & Family | Reply 19.06.2015 16:45

Thinking of you all and sending much love xoxoxo

Annette | Reply 19.06.2015 07:46

Hopefully it won't be long before Piper is back to her beautiful, smiling self. Thinking of you all. xxx

Aunty Skye & Lachy. | Reply 19.06.2015 07:14

We love you darling girl. Come back to us soon princess and bring your smile with you. πŸ˜˜πŸ’œ

Lara | Reply 19.06.2015 07:11

xoxoxo to you all

Helen & John | Reply 19.06.2015 06:25

Praying for our precious Piper and her family. Hoping they find out what is causing these problems. Love to you all.

See all comments

| Reply

Latest comments

11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief

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

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

You liked this page