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
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