Saturday, September 28, 2013

The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 

Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

1 comment:

carly said...

Dr. Shafron put in Wesley's first shunt that lasted over three years - we love him too =)