Blog Archives

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.

Advertisements

Join Team Awesome!

We are going to participate in the Hydrocephalus Association National Capital 5K Run/WALK on Sunday, November 20. I was about to do a family registration for Kayleigh and I when I saw that they also have a “team” option. “Team” sounds like so much fun I thought I’d post this to see if anyone else would like to join us.

First, yes, we will be called Team Awesome. This is what Kayleigh and I call our family. As in, “What a great thing that just happened. Go Team Awesome!” *high five. Maybe we’ll even come up with some horrible t-shirt design and we can all look silly too. Also, yes, we really do call oursleves Team Awesome.

Second, no, we won’t be running. You crazy?!?! I mean, maybe some other time, after I’ve lost a lot of weight, gotten into much better shape, and find a way to overcome all of the (completely reasonable) excuses not to ever run unless I’m being chased by something terrifying, then maybe I’ll run. This time around though, you can be sure that we’ll be lollygagging around the back of the pack and trying to enjoy ourselves.

On a more serious note, we are doing this to raise awareness of hydrocephalus and to raise money for research. One or two of every 1,000 babies born every year will have hydrocephalus. Shunt surgeries cost over $2 billion per year in medical expenses, and less than $5 million in public and private money combined is devoted annually to hydrocephalus research. So, join us! Registration is $25 per person. (Kids 12 and under are free.) Let me know if you’re interested in becoming a member of Team Awesome, and I’ll let you know what you need to do to start helping us raise money.

Don’t have time? Don’t feel like spending a day in DC? Don’t worry because you know if you can’t be a Hydrocephalus Association National Capital 5K Walker, you can always be a Hydrocephalus Association National Capital 5K Walker Supporter! We’ll let you know when we’re ready for donations.

Thanks in advance…we’re counting on you.

 

Birth Defect

We got a very nice letter from the VA Department of Health yesterday. It was to let us know that they’d been notified that Declan has special needs, and that they have some programs available to help him. Reading through the information I found that he is is in a State database of children with birth defects.

I really have no idea if I will become used to this, but seeing the words “birth defect” really had an impact on me. Even now, typing them and “special needs” is on the hard side. I know that we are fortunate, and that so far Declan doesn’t seem to be having any develepmental problems, but nothing can change the fact that he has a birth defect. “Birth defect” will be something that he carries with him throughout his lifetime. It just seems kind of harsh if you know what I mean.

I am glad to have received the letter. We will almost certainly be taking advantage of some of the programs they were writing to tell us about. Life just loves slapping you with some reality every once in a while though, doesn’t it?

In other news, a few weeks ago Declan went for a follow up with his neurosurgeon. His shunt is doing what it does, and Declan isn’t having any problems with the fluid draining from his brain. The Doctor believes that the place where the fluid should be draining has a buildup of calcium and this is what caused the accumulation of fuid to begin with. It sounds like this is good news since this means it probably wasn’t one of the scarier things that can cause hydrocephalus.

There was “something” on the last MRI that the Doctor wants to keep an eye on. It could be “nothing”, but apparently is worth watching. Declan will be having another MRI in the next few months so they can take another look. I guess being on the edge of our seats wondering if “something” really is “something” or could just be “nothing”, is just part of being us now.

At least our kids are super cute! =)

Now He’s Just Messing With Us

Last Tuesday was Declan’s 4 month check up. Usually Kayleigh will send me a text when they’re finishing up to let me know how everything went. At around noon I hadn’t heard from Kayleigh so I sent her a message to see if they were done yet. Instead of replying, Kayleigh called me back and left a voicemail. When I had a chance I checked, and the voicemail just said something like, “Please call me back when you get this.”

This isn’t like Kayleigh, and really isn’t the kind of message anyone likes to get from a loved one, so I had to hold on tight to keep from jumping to some horrible conclusion. I called Kayleigh back and she said that there had been a problem when Declan got his shots. He screamed, and screamed, and screamed (just like every other baby who gets shots), and instead of tapering off and calming down, he just stopped all together. He stopped crying, he stopped moving, and he stopped breathing. You’ve probably seen kids do this when they’re really crying. That thing they do right after a long scream when they’re trying to catch their breath again. It sounds like it was like that, except instead of that long hiccuping breath at the end, he just stopped moving.

Of course the pediatrician was right there, and told Kayleigh to do just what we always did when Amelia used to get panicky. Kayleigh blew in his face and from what she told me he started breathing again, but immediately went to sleep (or you could say he passed out). The fact that he went to sleep made the Doctor a little nervous so she asked Kayleigh to stay in the office until he woke up. I’m not positive, but I’m pretty sure they were there for more than an hour. After he woke up Kayleigh called to let me know that the Pediatrician was concerned because Declan was looking a little pale when he woke up. She was going to call the Neurosurgeon and check in with them to find out if they needed to see Declan. I tried to stay at work a little longer after that, but was too stressed so I went home.

Once I got home I got to hear the whole story, and I found out that the Pediatrician was worried that Declan may have had a seizure. This was why she wanted to talk to the Neurosurgeon. We sat around wating for what felt like way too long wondering if we were going to need to pack up and make a trip to the emergency room, and then the phone finally rang. A nurse called to let us know that the two doctors had talked with each other and decided that it wasn’t a seizure. Declan is just an advanced little guy, and learned early to hold his breath until he passes out. As the title says, I’m pretty sure he was just messing with us. I can almost imagine him saying to himself, “This’ll show ’em to stick me with needles!”

While it was a scary time, at least we know Declan is healthy. Compared to Amelia (who was born 5 weeks early and was a tiny little thing) he’s a giant. He can already stand up for a few seconds if we put his arms on the coffee table. He acts like he’s about ready to start crawling any day now. Also, I got him to say Mama once, but he hasn’t repeated it since the one time. I’m sure he and his sister will be testing us many more times and giving us many more grey hairs, but I think we handled this test pretty well.