BUT first, I'm making one final push for the hydrocephalus walk. We have recruited 50% of our team member goal and we've made 30% of our monetary goal of $3000. Every little bit counts and I am so thankful for the support that we have received, but I want to do so much more! I've never shared this on my blog, but one of my lifetime goals is to raise $135,000 for the Hydrocephalus Association. Why that much? Well, Aurelia's 10 day stay in the NICU/ICN cost $135,000. That was just staying in the NICU/ICN (24 hour care, ventilators, monitors, medications, etc.). That doesn't include the two surgeries, the anesthesia, the many consults before she was born, the trips to Duke, the twice weekly physical therapy appointments, the specialists we see, the list that goes on and on and on and is continually increasing. I thought $300,000+ was a little more than I could chew so I went with a nice easy $135,000 10 day NICU stay. Of course, we have insurance. And although our medical bills are large, they aren't triple digits. It is just staggering to me to look at the toll that this one little word, hydrocephalus, can cost one little person.
Here's why the Hydrocephalus Association (HA) gives me hope and gets my backing: They are the only group looking to eliminate the challenges caused by hydrocephalus. For the rest of Aurelia's life, she will have hydrocephalus. For the rest of my life, I'll worry about shunt malfunction. For the rest of our lives, our family will live with the challenges of a condition with unknown causes and no known cure. HA is working to improve the care available, researching causes and new care options, advocating and raising awareness, organizing support and education for families and individuals living with hydrocephalus, and so many other things. And ultimately, they are looking for a cure. All of that gives me hope in a sometimes frustrating and hopeless situation.
SO, here are two ways you can help:
1) Support our WALK team with a donation! To donate to Team Hawk click HERE! Then select either a specific team members name to enter a donation amount OR select General Team Donation to enter a donation amount. We are grateful for any donations. Every little bit counts! And did I mention it's tax deductible?
2) Join our team as a member. If you live in the Seattle area, you can walk with us on Saturday morning at Magnuson Park. Click HERE for more information. If you don't live in the Seattle area, you can join our team as a virtual walker. To join our team, click HERE and select "Join Our Team." Participation either as a virtual walker or real time walker is free. We are encouraging team members to raise $50 to receive a WALK T-shirt (it will be mailed to you 6 weeks post walk). I love the idea of all our friends and family wearing T-Shirts that say "Hydrocephalus Association 2011 Walk." Anytime you get asked, "What's hydrocephalus?", you can tell them about sweet little Aurelia.
There you have it. That's my final push.
Need some more practical application on why we need HA to eliminate some challenges? Tuesday Aurelia was acting off all day. She took two really long naps, she was fussy and lethargic, she threw up twice, and she had no appetite. She had a low grade fever by the end of the day. Normal baby sick stuff, right? Teething, or a little bug, or an ear infection. Except that all of those things I listed are also signs of shunt malfunction. While all parents have those moments when they think, "Should I call the pediatrician?" Added to my list is, "And the neurosurgeon? The neurologist? Should we go to Mary Bridge?" In the back of my mind, I kept thinking how it would be strangely fitting to miss the HA Walk on Saturday due to something shunt related. In the end, I decided to monitor the fever and rock my miserable little girl through the night. The fever broke at 5:30 and she's making her comeback to health. But I know that every fever, every vomit, every off day will come with that little voice in my head. . . the hydrocephalus mom voice.
