I guess is fair to say we were hoping for something a little more positive than received during our last visit, we appreciate the complexity of Piper and all the medical profession are doing for us, although it would be nice to leave
just one appointment without Michael and I turning to each other disheartened and in disbelief!
Unfortunately our dear little girl has increased her number of seizures per day, this along with the varied seizure types has brought greater
concern. Results from Harvard have shown 235 rare variants, in Pipers tests for whole exome sequencing, we realise we may never gain the answers we are looking for, although we also know great things are happening every day in medical science as research
for Piper continues.
Pipers development has certainly improved since her state of regression, with greater head control and almost a commando crawl happening :) piper has started to vocalise and although it takes a bit of
work, smiles are starting to return :)
We were told many things may or may not be possible for Piper.
Piper may not walk, talk , sit or crawl, may not regain the ability to swallow fluids appropriately
and may in fact loose the ability to perform current skills, MAY Not! There's also a MAY in there ;)
Does she know you? We'd like to think so.. Will she hug you? No... Piper can not hug or kiss or show affection,
although I believe if her body would physically allow her to, she certainly would! Pipers eyes light up and her mouth opens, I know all these things are in there! Waiting to come out!
We were briefed on SUDEP and the increased
mortality rate in children like Piper, through research we were well aware of this, I think you take things in differently when it's spoken out loud, that was a little difficult to hear, especially for Pipers Daddy. like all things medical,
you must be informed of the worst that could happen.
Although we couldn't help feeling disheartened our spirits were soon lifted with great things to come...