The World’s Worst Fundraiser
Today I am telling the story of a Dad who stinks at fundraising. Yes, that Dad is me. The walk we’re participating in is on Sunday, 11/20, and I’ve barely started raising funds toward my/our goal. I won’t make too many excuses other than being the king of procrastination and not being a very experienced fundraiser. I promise that next year when we do the Hydrocephalus Association National Capital 5K Run/WALK I’ll be a much better fundraiser! I swear I’ll bother you much more often, and I’ll write long heart wrenching blogs about how badly I need your help with this. You will be powerless in the face of my future fundraising abilities. Toward the end I’ll have to ask you to stop giving. “Enough is enough! We have reached our (far loftier) goal!”, I’ll say.
But for today, I will just beg you to start giving. Please give. Please help us raise funds for researching the condition that has effected my son, and thousands of other people of all ages and backgrounds. For the most part, the treatment for Hydrocephalus hasn’t changed for about 50 years. The shunt is a great device, and I am so thankful for it. I haven’t been able to find where I read this originally, but if I remember correctly the shunt fails more than any other medical device. Something like 40% of them fail in the first year. I know we can do better. I know there are great minds around the world who can find this “better” if only we can give them the money they need to do the research.
So please go here and give whatever you can to help us. You can even go here and sign up to join our team for the walk. Then you can be my Yoda and show me your Jedi fundraising skills. We sincerely appreciate anything you can do to help.
Posted on November 1, 2011, in Awareness, L-I-V-I-N and tagged hydrocephalus, parenthood, shunt. Bookmark the permalink. 6 Comments.
Declan's Head 
Hi I am a mum of a 6 month old baby boy that’s waiting to be tested for Hydrocephalus. His head has been on the 99.6th percentile since he was born and he has a very prominent forehead along with a ‘ridge’ that you can feel from ear to ear. His frontal fontanelle is quite large and seems to be open towards the front of his forehead. Did/Does Declan have these symptomps?
His head shape is quite similar to Declan’s. I guess my question is did you notice any signs or symptoms in him or was it a big shock? My son was tested for Craniosynostosis which is another condition that can cause a ‘bigger’ head where the sutures close prematurely, but the results came back clear. So we are now waiting for an ultrasound.
Thanks,
Laura.
We didn’t notice any symptoms at all before the ultrasound. Looking back there were a few that we just didn’t notice. His fontanel was bulging, which we really didn’t realize until after the shunt surgery and saw how sunken in it looked compared to how it was before. Declan’s eyes were also bulging out some, which we’d just chalked up to having big, cute, baby eyes, but again, after the surgery there was quite a difference. The surgeon also showed us how he had trouble looking up when we went for our first visit. The surgeon jingled his keys over Declan’s head, and he couldn’t look up with his eyes to see what the noise was. He had to move his whole head to look up. As far as a ridge on his head, that’s something he didn’t have until after the surgery (when the pressure was gone it made his sutures overlap some, which has since gone away). We’re sending good thoughts your way!
Laura I want to tell you to not worry. But you are in the middle of a scary time and you wouldn’t be a good mom if you were not. I was sitting in my dentist waiting room when my pediatrian called to let me know that our ultra sound results were not good and she was setting up an appt with a neurosurgeon (scary). She told me right then. “We don’t know anything for sure DO NOT look this up it will only scare you.” So we didn’t. I still worried I was still scared. But I think it was good advice. Hydrocephalus is a tough disease to get a handle on because it affect so many different people at different ages for so many different reasons. So there is lots of scary situtation out there that do not nessarily have anything to do with your baby. But the good news is that if your child needs surgery that this is the most common reason for surgery. From across the divide as someone on the other side of this thing I want to tell you that everything will be ok. trust your doctors they will be a great support. Lay low stay home look into your babies eyes and wait. Hopefully it’s nothing and your perfect little baby is healthy. But if it’s not we will be here if you need an ear, to remind you a that you will get through this. You made it through labor you will make it though this too.
Heads up: I just nominated you for the Liebster Blog Award! Congrats and Enjoy! Stop by my blog when you have time to see what it all means. Love to you!
Hi – I am in the same position as Laura. My beautiful son (who looks a bit like Declan which is how I found your blog!) has had a big head at his last two checkups. The last time he went in, everyone just thought it was makeup growth (he is a preemie)…But he jumped percentiles again at 6 mo and is now at 97%. Everything else looks great, milestones are good, he seems normal to me, and I know he can look up, and has a sunken fontenelle when he cries (which is when I see it). So at first I was not worried and just figured he has a big head. But he vomited twice this week…which makes me a little nervous. My pedi wants me to come back in a month and remeasure…If it grows again they will do an ultrasound…Do you think I should be more proactive?? Also – how is Declan? He is adorable. And his head looks very normal to me! 🙂
Erin,
Sorry it took us SO long to get back you. You have probly long since navigated your situation on your own. But I wanted to connect with you and let you know that I was in the same position as you. Weighing the risks and benefits of early detection and over protection. I think the best thing I did was error on the side of caution and get the ultra sound. It was easy and relaxed we had a good technitian. Your daughter actually had one too she was older nearly a year old and cried the whole time, but the tech was clearly uncomfortable working with kids and didnt have a gentle touch. But regardless it was much less invasive than an MRI. So I say go for it it will put your mind at ease, to know what you are dealing with. Good luck! And keep us posted.