Sunday, July 31, 2011


Will has three visual challenges to deal with on a regular basis. The first is cortical visual impairment (CVI), which is actually not an "eye problem" per se, but caused by damage in the transmission lines between the eye and the brain. Will's CVI is likely caused by the same brain hemorrhage that caused his hydrocephalus and cerebral palsy. It is very common for children with cerebral palsy to also have CVI. Will's ophthalmologist once described CVI to me as this:

"His visual field isn't clear like yours. He sees things in patches. Imagine yourself looking through Swiss cheese each day. And if that wasn't unfair enough, tomorrow when you wake up, imagine that the Swiss cheese has rotated 15 degrees to the left. Each day you have to learn where you can see and where you can't."

There isn't much that can be done to assist a person dealing with CVI, though with time they tend to get better at dealing with the idiosyncrasies of the impairment. Will's CVI has been described as minor, however we continue to see him have eye misalignment, especially when he is tired on concentrating on another sense (usually hearing).

As is common with CVI, when Will is looking at something, he does not appear to be looking directly at it. He seems to look at things through the side of his eye. This is because people with CVI tend to have good peripheral vision but really poor center vision. We know that he can see, though, due to his reactions to things around him.

Will's second visual challenge is called retinopathy of prematurity (ROP). When Will was still in the NICU, the little blood vessels in both his eyes started to grow in a very disorganized manner. His retinas had some scarring and were on the verge of detaching. They did laser surgery in both eyes to reattach his retinas and prevent blindness. However children who have had ROP have a very high incidence of near-sightedness.

The third visual "challenge" is just genetics. Though Nate doesn't wear glasses, I have worn them since the 6th grade. Both of my parents wore glasses at an early age. In fact, my dad got his first pair of glasses at the age of 4.

Well now he and Will have something else in common (aside from their shared love of running around and around on the playground together and dropping wooden fruit)!

Will will soon be receiving his first pair of glasses! At Will's annual ophthalmology appointment, his doctor felt as though Will hasn't made the visual progress this year that he has been over the past couple of years. It is possible that he has learned to control his CVI as best he can, but just cannot see clearly. The doctor thought that perhaps it was time to correct for Will's ROP- and genetics-caused near-sightedness, and see if that helped him better control his eyes.

I've been expecting Will to get glasses for years. But this was the first time that the doctor and I agreed on it. We know that Will isn't really going to enjoy having the glasses at first, but he'll get used to them. And we definitely all feel that by doing what we can to help Will's vision, he'll have the best chance of being involved and engaged in his own life. Should be good! Now we just have to wait for the glasses to come in!

Saturday, July 30, 2011

Let's go Congress, let's go!

It doesn't matter to me if you're Democrat, Republican, Independent, left wing, right wing, Tea Party, non-voting non-believer... I think we all agree that an agreement has to be reached on this debt limit, and the time for our nation's decision-makers to compromise is now!

So, in an effort to support our Congress through osmosis, I dressed Matthew in his Binghamton SENATORS finest today (thanks Chudaciks!). He also pretended to call our local representatives and encourage them to find some middle ground before August 2nd.

We're happy to dress one of our other children (or Otis) in any garb pertaining to support of the House of Representatives or the President... however Binghamton REPRESENTATIVES just doesn't have the same ring to it.

Thursday, July 28, 2011

Rough night

Shortly after the boys' bed time, I was folding laundry in the living room and Nate was out walking Otis. Luke came out of his room and told me he needed a towel. I asked why. He said "My bed is wet. But I didn't pee."

I went into the room to first discover that Luke had emptied Will's brand new bottle of saline onto his comforter. My second discovery was Will in the throes of a seizure.

I maneuvered him to the living room without Luke seeming to notice that anything was wrong. As I was getting Will's emergency seizure medicine together, Nate and Otis returned. Nate held Will as I gave Will the Versed into his nose.

The Versed takes about 30 minutes to work, so we just sat with Will as he fought to control his eyes and mouth. At times it would seem as though he was about to come out of it, only to plunge into another fit of tongue thrusts and twitching, bewildered eyes.

We're silent during those times. When you contemplate so many quiet thoughts and wait for the minutes to pass. Slowly. Painfully. Helplessly. I find myself hoping that the Versed will work faster each time I administer it. To ease Will's distress sooner.

Life around here has been pretty calm for the past several weeks. No drama. Kind of boring actually. But thats ok. But when things are that calm for long, you find your thoughts becoming braver... "Yes, I can do this. I've got this managed. This life."

The more drama that comes around, and the more silent and longer the moments, the more those thoughts flee. And thoughts of insecurity and fear creep in. "Maybe I can't do this. How did we get here? Who really believes that I am cool and calm? Who chose us for this role? How do we find the strength to keep going when the fear and uncertainty is so pervasive?"

The Versed eventually puts Will to sleep. Usually fitful at first, but after some comfort and readjustment in bed, his mind releases his body from the grips of his seizure and he is peaceful. But we're not peaceful that quickly, and we take turns keeping watch until the peace and release of sleep takes over our bodies and minds, and frees us to find strength and perseverance to do this again tomorrow... and believe that perhaps it can be a good one.

Tuesday, July 26, 2011

So hot! So not!

Just like the rest of the country, North Carolina has been overcome with extreme heat over the past several weeks. Last weekend was exceptionally hot. But little kids don't understand heat, and all they saw from inside was a nice sunny day and mean parents who wouldn't let them go out in it. Most of us would have liked to spend the day in the air conditioning, vegging out and eating ice cream.

But not Luke and Matt. They had a LOT of energy that needed to be released. I racked my brain for something that we could do to keep everyone happy so that their energy didn't drive us all crazy!

We don't usually like to break up the band, but ultimately we decided that the best thing to do was for me and Grandpa to take Luke and Matt to Marbles Children's Museum to blow off some steam, and for Nate, Will, Nana, and Grandmama to stick closer to home. This always comes with some guilt.

Though we've lived near Raleigh for several years, we haven't been to Marbles. It has been recommended several times, but have heard that it gets pretty noisy. And Will doesn't really do loud noises very well. Or unpredictability. Or people running at him. I can think of nothing louder, more unpredictable, and more wrought with runners than a children's museum. So we just haven't made the museum a priority, though I knew that Luke and Matt would love it. Our goal as parents of a child with special needs is always inclusion. It always will be.

At some point along this mental battle journey, I realized that it wasn't fair to keep Luke and Matt from something that they would enjoy. And it wasn't fair to make Will miserable by taking him to the loud museum. So I pulled a Yoko. We went our separate ways. We aren't often in a position where we have such a good adult to child ratio.

Though it took Luke and Matt a couple of minutes to realize what was going on in this crazy museum where you're allowed to touch everything and there are hundreds of other free kids running around, they quickly caught on.

Luke enjoyed shopping with his wheelbarrow at the grocery store (though there were shopping carts), and of course, driving the city bus. Matt's favorite activity was definitely walking the plank on the pirate ship again and again, and he also really enjoyed the vet's office.

I wanted to get a group photo of my dad, Luke and Matt to show off our fun time on top of the pirate ship. But everyone was having too much fun, and this is the only photo I got.

Will had a great quiet afternoon with lots of adoring attention from his grandma and great grandma. Despite my angst, it really turned out well and everyone was so happy when we all got together to have dinner and sing Happy Birthday to Nate and Nana Jean!

Monday, July 25, 2011

Little victories

Sometimes you have to celebrate the small stuff... two small victories to share.

We have successfully weaned Will off of his neurontin! It took several weeks, but with the taper schedule from our neurologist and the assistance of Will's teachers and caregivers, we stepped down from 2.5mL three times per day to nothing! With no negative effects.

Will was put on neurontin in 2009 for the pain associated with his g-tube surgery. It worked very well for calming his vomiting. Around the time the pain subsided, Will's seizure disorder was diagnosed, and because neurontin also acts as an anti-epileptic, we didn't want to mess with any of the drugs he was successfully taking.

We have now found an anti-epileptic drug cocktail that seems to be controlling Will's seizures (neurontin is not one of those drugs). Will takes a lot of medications, so if there is a drug that he really doesn't need to be on, our choice has been to try to get him off of it! Aside from the positive aspects of neurontin, it can have negative effects on the body's ability to regulate its temperature. On neurontin, Will "wilts" in the heat, so summertime in NC is really a challenge for him. So this is a very positive step!

Luke has been potty trained during the day time for almost 2 years. We've been working steadily on getting him potty trained overnight. He started to refuse diapers or pullups right around the age of 4, so we took that as a sign that his body was ready to go the whole night with no accidents.


Though some nights Luke does well, there are other times were three nights in a row he would wake up with soaked sheets. His vinyl mattress cover was really proving its worth! So for the past couple of months, we have been stopping all fluid intake at 7pm, Luke goes to bed at 8, and then we wake him up around 11 to go to the potty. We make him walk sleepily to the potty so he doesn't expect to be carried. Its been working pretty well.

We weren't sure how long this would have to go on. But last night, we got our answer. I was already asleep so I didn't get to experience this firsthand, but right around 11pm while Nate was playing PS3, he heard Luke and Will's door open, and Luke emerged. He walked right into the bathroom, dropped trou, went, and walked back to his bed. Wow!

Sunday, July 24, 2011

Happy birthday! It made me a shadowboxer, baby...

Happy thirtysomething birthday to Nate! I learned a new craft to make his birthday gift - shadowboxing. Like scrapbooking with three dimensional stuff! And a good way to commemorate some memories of the truck.

Thanks Jen Chudacik for your help with photos and Oma for your layout assistance! We're on the hunt for a good spot in the house for the memorial truck shadowbox, so that little boy hands stop finding it, opening it, and trying to touch all the pretty pieces.

Friday, July 22, 2011

All dressed up and no where to go

Don't laugh... but this is a helmet made for a 2-3 year old child. We bought it for Luke when he first received (but couldn't really ride) his tricycle. Luke was 3 at the time, and the helmet only fit him for about 4 months (when he was big enough to ride the trike) and needed a new helmet. I never thought that it would snugly fit my 15 month old baby.

Thursday, July 21, 2011

Bathtime, funtime

In the haste of life with 3 kids and 2 full time jobs, bathing children can often seem a chore. Though I know I'll be sad when the day comes when I am banished from the bathroom by a self-conscious boy years from now, right now bathtime can definitely eat into down time, cause drama, and be something we don't all look forward to.

Last week, we were miraculously able to eat an early dinner, which meant we had some extra time together and some extra time for baths. So unusual at our house! We can't fit all 3 of the boys in the tub together, but 2 of them at a time got some splash time together. We even got Will to sit up for a while and look eye to eye with Luke. A first! Matt is still not the biggest fan of baths, but when he's in the tub with one of his big brothers, he is a much happier bather.

Oh, and in case you're wondering. The boo-boo on Luke's head was caused by a dancing accident at school. Ironically, the lesson was called "Dancing with Control."

Wednesday, July 20, 2011

Date Night Redux

Date night went well! Nate and I met up at our hotel early on Friday evening and got our tickets for the sold out IMAX Harry Potter show. We had a beer and a little food at a local Irish pub, and got into line at the theater about an hour before the show. We were happy to find out that we were not even close to the oldest people in line, and we were surprised at the lack of costume wearing amongst our group of Potter die hards. There were a couple of obligatory wands in the group, but that is to be expected.

Save the guy in the row in front of us with a nasty cough (which sounded just like Otis right before he's about to regurgitate on the rug in the middle of the night), the show was awesome. No other word for it.

Afterwards, we headed out for dinner and to a local bar. We really had a great time, and it was cool to be out amongst adults for a bit :) Of course, we do not have the staying power of our early twenties, so we called it a night shortly before midnight. Breakfast at Perkins the next morning before heading home... perfect (coming from the girl who wanted to go to Denny's on the night of her wedding)!

Thankfully things at home went well! Oma and Michele did a beautiful job with the boys. Everyone was fed, medicated, clothed, clean, and present when we arrived at home. Heck, Oma and Michele handled a couple of calls with our idiot local pharmacy, getting a feel for some of the daily crap that we deal with as parents of a child on multiple medications!

Dishes were washed, Matt and Otis were napping, it was... quiet! Surprisingly, we shared just 2 phone calls with them while we were out for the evening, that is how well things went! And those 2 calls were placed by me...

Luke (and Oma) snapped some photos of the boys' day with Oma and Michele to commemorate. Definitely looks like they had a good time. At least it looks like Will and Luke had a good time... not a picture of Matthew in the bunch (sibling rivalry running deep these days?). Not sure if Oma and Michele want to do it again any time soon... but they have a year to recover until we start thinking about another night away.

Tuesday, July 19, 2011

Night night...

Cute video from Matthew... if you get the blog update via email, visit us directly at to view!

Thursday, July 14, 2011

Date Night

It is a rare occasion that Nate and I get out of the house without children. Since we've had kids, our average has been one date night per year. Though we (of course) would like to spend some alone time more often, we don't complain... we just relish these moments when they work out.

We're so very lucky this year that my mom (Oma) offered to keep all three boys for a night while she's here for a couple of weeks. We're also very lucky that our good friend Michele agreed to stay at the house for back up... three little boys can be daunting for even the most experienced grandmother! Oma has spent the last couple of nights learning the idiosyncrasies of bed time at our house, how to get Will's medicine together and start his feeding pump, and how to get Luke to bed without him getting out of bed 6 times a night.

So we're going on a date on Friday (tomorrow) night! Somehow it worked out that Friday is also the release of the last Harry Potter movie (I am a huge fan of the series, Nate goes along to the movies with me). We're headed out for the early show at the IMAX in Raleigh. Then it is off to Caffe Luna for a late dinner. Good movie, good food, cheap wine... sounds perfect. We might even check out the Raleigh Times, however we get sleepy very early these days... Sadly, I am not sure if we can keep the hours that we did just 5 years ago! But we certainly are going to try to live it up.

Last year we were fortunate to go on 2 dates. The first was a Dave Matthews Band show in DC (Grandpa, Grandmama and Uncle Drew triple-teamed the boys while we were out). The second was last year's Toby Keith and Trace Adkins show. We rode in the truck in jeans and cowboy boots, and stopped at Wendy's for dinner on the way. It will be nice to go somewhere that we actually have to tip a waiter! Oh wait, not sure I remember how to tip :) Its been so long!

Wish us a good time, and wish Oma and Michele good luck! We'll be living it up 'till next year...

Wednesday, July 13, 2011

Test drive

Three years ago this month, we ordered Will's first wheelchair. When it finally arrived in October of 2008, we finally had a suitable and supportive means for Will to experience the world. It was a great experience for all of us.

Through the years, Will's wheelchair technicians have adjusted the chair so that it grew with Will. It survived two airplane trips, hundreds of trips up and down the front steps, and thousands of times being vomitted on. Oh ok, I might be exaggerating... perhaps not thousands of times. But definitely hundreds. Thankfully the pad covers are neoprene and washable.

In the past year, Will has broken several parts of his wheelchair. This is mostly due to the fact that Will does something called extension - he flexes all of the muscles in his body to push or reach for something. There is a lot of force behind his extension, which flexes his chair. And his chair isn't made to flex. When he pushed on it, the thing would creak. Sometimes parts would fall off. After he would be done flexing, he wasn't positioned correctly in his seat because he had managed to push his butt out of the back of the seat. So his posture would be terrible.

Frustratingly, each time that Will broke a piece, we had to go through insurance approval to get it fixed. I know. It makes no sense. So for months at a time (while we waited for insurance cronies to approve a $50 part), we would be holding the tray on his wheelchair with gum and a toothpick. We used rubberbands to hold together the split piece of wood that serves as a pommel between his knees. We had an allen wrench set permanently attached to our hands to tighten up the bolts that held the head rest in place. We were a collective MacGyver.

But after a while creativity like that gets old, and you start asking around for how you get a new wheelchair. Clearly it was time.

The good news for us and Will is that insurance will pay for a new wheelchair once every three years. So we're due. We talked to Will's physical therapists and teachers, and everyone agreed that Will needed a chair that was a bit more flexible. Literally. We needed a chair that flexed.

Our wheelchair technician was excited to tell us about something called a dynamic wheelchair. It is a chair that has flexible joints where the back of the wheelchair meets the seat, and also in the foot rest. He was even more excited to tell us that there were three pediatric dynamic seating systems on the market, and he could bring all three for Will to try at once.

After weeding out the selection committee, Nate, Oma, the wheelchair technician and one of Will's physical therapists met today to try out the chairs. Two were quickly eliminated from the bunch due to shoddy construction. We need something substantial!

Will took to the Kids Rock 2 like a fish to water. The photo at the top was taken just a couple of minutes after the chair had been fit to Will's height. Smiles!

He pushed with his feet. The foot rest flexed. The wheelchair didn't make any noise! Nothing fell off of it! When he was done pushing, the foot rest went back into position. And miraculously, because he hadn't really been able to push against anything, his butt was still in the back of the seat and his posture remained correct!

This is huge. In a good way.

But also in a bad way... but not really a bad way. Recall my post last week about Will gaining weight... so of course, this chair is larger. It needs to be. Unlike Will's current Kid Kart, the Kids Rock does not come apart in 2 pieces. For transportation, it has to remain in one piece and it is a lot bigger than the Kid Kart. We aren't actually sure how well it will fit in our current van. It also weighs a lot more, which means that we won't be able to pick it up or move it around as easily.

So in addition to a new wheelchair, we've also started the required paperwork to get our van and our garage modified with a lift or a ramp. Sarcastically **lucky** for us, all the insurance hoops to jump through and the manufacturing of the new wheelchair will likely take 3 months. So we have some time to get things done around here to prep for the new wheels.

Sunday, July 10, 2011

Advancing photog

Everybody remembers that Luke was a budding photog just little over a year ago, right? Well those skills, they are advancing. Luke recently complained that his camera wouldn't let him take any more pictures, so that's my clue that it is time to download the latest batch of brilliance from it.

Luke definitely understands more about capturing faces now... there weren't so many snapshots of behinds or feet in this collection. However, since the camera hasn't left the house and typically there are only 5 of us around, there is a limited source of face options. Being that Nate and I are the only two who will smile (or at least make weird faces) on command, there are a lot of photos of us.

Perhaps Luke is getting me back for always having a camera in his face? "Mommy, smile. Mommy, look at me. Mommy, eyes here. Mommy, I know you can hear me!!"

Luke also caught some interesting photographs of life around our house. Perhaps they seem boring and mundane at first glance... but when I actually think about it, these things are pretty important parts of our days.

A rare still moment with my brother Matthew and dog Otis... usually we're either chasing each other or fighting over a toy.

A little over-exposed, but this is a good pictures of my twin brother Will. I love him so much!!

Very durable and kid-friendly IKEA Mamut chair. I love these chairs, and often sit at one to do art or play with my computer. Lately, Matt has been sitting in the other chair next to me. Though he has figured out how to get onto it, he has not yet figured out how to get down. Without falling.

Have you ever seen such a beautiful printer? HP, take notice!

Will's belly laugh... no better sound in the world.

Will has to take a lot of medications. Mommy or Daddy prepares his medicine and feeding pump every night before bed.

Proof that I CAN drink water in a glass without a top, and without breaking it. See that, Mommy and Daddy! This is my proof!

This camera is good for proving things. This is my brother Matthew trying to steal my camera from my grip.

My brother Will wasn't feeling very well. I took his picture to try and make him feel better.

What Luke photo collection would be complete without at least one butt shot? Sorry O.T....

My mommy said that if anyone from high school knew she had these shoes, they would not be surprised.

My Opa. Soon to be my neighbor!

For some reason my parents have a bowl with Otis' name on it... though Otis has never once used the bowl and it sits on the counter with all their junk in it.

This is the view of the floor and bathroom door from under my parents bed. Why would I have this shot, you ask? Well, this is my new favorite place to sleep. I crawl under there because they won't let me in their bed in the middle of the night. I bring my pillow so its pretty comfy. Sometimes I make noise and my mom gets scared, which scares me and I bump my head on the bottom of their bed. Ouch.

This is me. Luke.