Hope Love Cure

Life's roller coaster continues

Feeling a little anxious this week! on our way to Melbourne once again for various appointments, some of which I'm excited for like pipers assessment for a walker and splints! and others I wish I knew what to think, or how to feel for that matter.

Piper has been tested for many things in the past, her neurologist has now gained permission to test for something a little more rare, a condition known as Retts Syndrome, on one hand Michael and I are wanting to seek answers so we at least knows what the future holds for our little girl, on the other we'd much rather consider Piper has her own condition, one that is curable through therapies and growth.

 Rett syndrome children are beautifully known as Silent Angels, as these children will often lose the ability to speak or are unable to speak at all, some will never sit, walk or talk and many have nasogastric tubes due to their loss of  function, including the ability to swallow and control their secretions. Some Retts children have rapid hand movements,  some develop a wringing motion or uncontrolled clapping, Retts babies are born normal, often seizures and loss of skills are the first signs. 
 Rett syndrome is found almost exclusively in girls, there are around 200 cases of Retts Syndrome in Australia. 
As I read over the statistics and symptoms of the disorder I fear this could be it, Piper fits so well, although  in saying this, we had also thought the same of Angelmans syndrome.
I wonder how life can be so challenging yet so rewarding.
As we begin the journey back to RCH, all we can do is  pray for a brighter tomorrow for our purple princess xx 

Write a new comment: (Click here)

SimpleSite.com
Characters left: 160
DONE Sending...

Barb | Reply 24.11.2012 10.29

Thinking of you all and hopes for some answers. Fingers still crossed!
Barb

skye sparkes | Reply 24.11.2012 04.53

Still the most amazing little girl I have the pleasure of knowing.xx

Pain Family 24.11.2012 05.08

Love you Skye! xx <3

Maz | Reply 24.11.2012 03.33

Love and thoughts with you all. X

Pain Family 24.11.2012 04.47

Thank you Maz! XXxx <3

Sally Parsons | Reply 24.11.2012 01.25

Hopefully you're another step closer to answers, and with those answers come more certainty and strategies for helping Piper.

Summer 24.11.2012 01.32

Indeed! Thanks Sal xx

See all comments

| Reply

Latest comments

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
https://ultracarepro.in/products/

...
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

...
13.10 | 11:42

Love yo piper to the moon and back

...
You liked this page