Category Archives: L-I-V-I-N

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.

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.

Normal, Normal, Panic, Normal

It has been too long amigos…sorry about that. I’m probably decompressing from all the stress I didn’t realize I was feeling at the time, but I have been indescribably tired these last few weeks. I guess trying to let it roll off your back has consequences. What lesson is there to be learned? I’m not really sure, except if you deal with something like this, be prepared for the crash. I suppose it’s not unlike the way you feel after minor-ish car accidents. Initially, you don’t feel so bad, but the next day you feel like you were beat up. I do feel kind of like someone has pounded my emotions in the face, and I still haven’t quite recovered.

Last week Declan went to see the neurosurgeon for his follow up apointment. His head is something like 2cm smaller! His stitches are healing well. His sutures (the places where the bones of your skull meet) are now overlapping a little as a result of his head getting smaller. It’s not terribly noticable, but when you look you can see the lines where the bones meet. This may take quite a while to correct, but it’s not really a big deal.

The Neurosurgeon did tell Kayleigh that he saw “something” on the MRI that no one had noticed up to that point. He didn’t seem terribly concerned, but he also didn’t seem to have much as far as details go either. Just “something”. Declan will have to go back again in the next few months for another MRI so they can look at “something” again. So…normal, normal, PANIC. This is where our assertiveness is going to have to kick in. Kayleigh is going to call the nurse and search for some more clarification on what “something” means. For now, we’re back to normal mode, since worrying won’t accomplish anything.

In another normal, normal, panic, normal moment, two Saturdays ago I watched Declan and Amelia solo for the first time since surgery. Kayleigh left for work and everything was going fine. Amelia was watching some Super Why and I was just started giving Declan his first bottle. About 2 minutes in he lost it. He cried, and screamed, and cried. When I tried to get him to drink a little more he’d just gag. He screamed, and screamed, and wouldn’t stop. Kayleigh called when she got to work and I let her know that I was starting to get a little panicky. She made some suggestions, and had to start work. (I’m pretty sure she was about to jump back in to the car and make the long trip back home.) So I’m walking around with irate Declan, jiggling him around, and trying to calm him down, then…he burped. Yep, that was it.

It was completely unlike Declan to cry for so long (15-20 minutes of crying seems like an eternity when you start thinking you may have to load up and head to the emergency room). He did the same thing the following Monday. We think he may have outgrown the formula we were giving him, and he was just getting tummy aches. Shoo!

(It’s been about another week since I wrote this. Instead of changing it, I thought I’d just add that Kayleigh did check on “something”. The nurse called right back this time. She explained that there’s a small fluid pocket in Declan’s brain. The Doctor isn’t worried, but does want to keep an eye on it. Another note: in the picture above, the larger line you can see on the left hand side of Declan’s head is a part of his shunt. A tube runs off of that in to his brain. On the left you can see one of the overlapping sutures.)

Until next time…yawn!