Well, it's' September. Welcome to National Hydrocephalus Awareness Month. Readers! Take heed! Be aware! I know that you're all familiar with this incurable, life-altering brain condition because I talk/write/nag about it all the time. But I feel it's part of my responsibility as a mother of a hydro baby to let people know about this largely unfamiliar (but very common) condition.
I could tell you all the information about shunt failure, possible complications, developmental disability and delay, yadda, yadda. And NONE of this stuff should be "yadda, yadda" because it's all very serious. But it's all a part of the daily life of families affected by hydrocephalus, which means that very serious becomes very normal (and a little "yadda, yadda"). I hope that many of you know a lot of the little facts about hydrocephalus since you read this blog. And I don't want to become too redundant by constantly writing and talking about the same thing. I don't want you to stop reading my blog because all I talk about is hydrocephalus. It's a very big part of our family life, but there is a lot more to Team Hawk. So, instead of throwing a bunch of facts at you today, I'm going to sprinkle some in here and there throughout the month. I'm also going to try and show you what our family and other families are going through. My hope is to give a better picture of what day to day life looks like with hydrocephalus.
Here's how we're dealing with hydrocephalus today:
Guess where we are right now? Aurelia and I are in North Carolina for her final stem cell reinfusion at Duke. We traveled the day that Hurricane Irene hit, which meant cancelled flights and a long day of travel. But we're now drinking sweet tea and eating grits and getting lots of love from Mamaw and Papaw Hawkins. This alternative medical treatment is one of the few things we can do to help give our baby an edge. You can read more about cord blood infusions here, or read about our previous experience at Duke Children's hospital here, here, or here. We are prayerful, hopeful, and excited to see the results of next Tuesday's infusion. Please pray for a smooth appointment, for few pokes, and for patience. . . these appointments always seem to take a lot of patience.