Monday, October 31, 2011

Pumpkin carving

We held off carving our pumpkins until the day before Halloween... partly to ensure that they wouldn't be mushy jack-o-lanterns, but also because we haven't had much free weekend time!

Each year we hope that the boys will be a little more excited about carving their pumpkins. Perhaps next year will be better! Ha ha. Luke was happy to tell me how to carve his pumpkin, but he wanted NOTHING to do with all the "pumpkin goo" that needed to be removed from the inside. Matt quickly followed suit... preferring to wait until Nate had cleared out his pumpkin innards before venturing into the pumpkin with his spoon. Will was happy to laugh at all of us on the porch, and enjoyed wearing his pumpkin as a hat (and also staying away from the goo).

So even though Nate and I did all the carving and goo removal, I think you'll agree that the pictures look pretty good! Thankfully the weather warmed back up to a slightly more NC autumnal appropriate 55 degrees (sorry Northeastern friends with power). Things are looking good for the emergence of Buzz Lightyear, Army Ranger, and Garden Gnome!

Sunday, October 30, 2011

About that time

It is getting to be about that time of the year for us... when we look at the calendar for the rest of the year and realize there's only one weekend without something planned. After a summer of free time and doing things around the house, we're in for big scheduling changes!

This past weekend, we were so lucky to be invited to a children's Halloween party put on by my friend from work (Jeanine) and her husband (Art). Mind you, Jeanine and Art don't have young kids of their own. They throw the party for their grandchildren and 45 of their closest friends... just because they love Halloween so much! In fact, when we arrived, Jeanine showed us around the house. Her Halloween decorations are impressive... she almost puts Cosmo's to shame!

Luke decided a couple of weeks ago that he didn't want to be Mickey Mouse after all. Thankfully for me, I hadn't bought any costumes yet. He was happy to choose himself a Buzz Lightyear costume. Stepping out of the Luke-mandated Donald Duck role, Will ended up with an Army soldier costume. And Matt has a costume that makes me laugh just saying it - he's going to be a garden gnome.

But with the ridiculously cold weather this past weekend, the aforementioned costumes just wouldn't work - too thin! So we wracked our brains for what to do, and realized that we had some oldies but goodies (and warmies!) in storage. So Luke dressed up as a policeman and Will as a fireman for the third year in a row. But who's counting?! They were happy and warm. Success in my book. And so what that the pants were a little high :)

And Matt got to wear the cow costume that Luke (mad cow) and Will (happy cow) rocked back in 2008. He was none the wiser about his hand-me-down status. Jeanine and Art live on a bunch of property and have a big red barn to boot... somehow I managed to get it as a background in this photo, which I like to call "Escape."

There were amazing fun kids games and activities planned. Will and Matt really liked the hayrides.

Luke excitedly picked up a bat and took a swing at the Halloween pinata, and did his best to throw his baby pumpkin the farthest in the pumpkin toss.

Matt wanted to take part in a lot of the bigger kid stuff, but couldn't quite do it himself. I helped him take a swing at the pinata. He did pretty good considering the bat weighed about as much as he did! And rather than throw a pumpkin in the pumpkin toss, he ran around and picked up everyone's pumpkin at the end.

Will loved riding around the property - the kid loves bumpy rides. And he even met a fellow firefighter and enjoyed showing off one of his toys around the fire (which was increasingly necessary as the party went on, the sun sank lower and the temperature dropped!).

So much fun! It is a truly rare occurence these days that all 5 of us have a great time somewhere, but it definitely happened at the Halloween party 2011! We can't wait for next year!

Tuesday, October 25, 2011

Side effects

Over the past 6 months, Will's neurologist has made many modifications to his seizure medication to better control the seizure activity. From my vantage point as a mother who has a lot of real world experience but no medical training, it appears as though finding the right medication combination and dosage is nothing shy of good luck, trial, and error. This is by no fault of our doctors. This is the nature of dealing with neurological disorders.

Will started this period of 6 months on a low dosage of Keppra (in combination with another drug). After his most recent hospitalization for seizures, his doctors doubled his dosage. Will had a small seizure 2 weeks ago, at which time we made the joint decision to get Will off the Keppra and start a new drug - Lamactil.

All drugs have side effects. Again, from my perch, it appears with neurological drugs, you're trying to figure out how many or what severity of side effects you're willing to tolerate for the benefits that you experience. With the Keppra, we were able to mitigate the one negative side effect that we noticed (Will's terrible mood) with vitamin B6 supplements.

It took a while, but we've definitely noticed another side effect. Take a look at this photo of Will from April 2011.

Now take a look at this photo from last week - 6 months of Keppra later.

Do you see the difference in the thickness of his hair? It used to be very thick. But you can practically see his scalp now, and his hair is very fine and stands straight up.

Buried deep in the rare side effects of Keppra, I was able to find documentation that hair loss is a potential effect. We didn't notice the hair loss when Will was on the lower dosage, but we really started noticing hair at the bottom of the bathtub after the dosage was doubled.

We're in the process of tapering Will off of the Keppra, and gradually increasing his Lamactil. Thankfully he hasn't shown any of the negative side effects that can accompany Lamactil. Let's hope that as we progress down the decreasing Keppra path, Will's hair thickens up again. He's much too young to show the typical Loss male-pattern baldness that has shown up...(sorry to all my male relatives on my mom's side of the family). But you guys still had lots of hair when you were 4 years old.

Obviously if the Keppra was controlling Will's seizures, this is a side effect that we would live with. In the grand scheme of life, being seizure-free trumps thinning hair. But that isn't the case for Will. Keep your fingers crossed that he continues to tolerate the Lamactil well and doesn't develop any obscure side effects from it... we have 3 weeks left of increasing dosage until we get to Will's therapeutic dosage.

Monday, October 24, 2011


Guess who's getting his own tricycle for Christmas? Guess who's going to be the most excited about that?

Sunday, October 23, 2011

Just go with it

Aside from his love for shirts and sweatshirts in kelly green, Luke doesn't really care about what he's wearing. I lay out his clothes each morning, and he takes his time putting them on... usually commenting more about his underwear for the day than the clothes people will actually see. He has never expressed any interest in picking out his shirt or pants.

Over the past couple weeks, he has started to develop his own fashion sense. Not pants, not shirts, not shoes or socks. Accessories. Hats, glasses, backpacks, and the like. His favorite combination is the Spiderman goggles that we bought for the pool this summer, and the New York Yankees hat that Papa picked up from Yankee Stadium.

This combination is so special to Luke that it sleeps (together) on the post of his bed closest to his head. This morning he got up, got dressed, and put his beloved hat and goggle combo on. He proceeded to play in his room with Matthew for about an hour. The goggles never came off. I don't think it matters to him if he can see well out the goggles or not. He's just happy to have made a choice about what he wears, and thrilled that no one makes him take them off. Seems like a pretty good self-esteem-building moment to me.

Wednesday, October 19, 2011

Bubba's got a brand new ride

As planned and just in time, Will's new wheelchair arrived today! The techicians from Carolina Mobility were super speedy and professional, and Will was sitting in his new ride in less than 15 minutes after their arrival. One would have thought this was a welcome change from being in his stander all day, however this was Will's initial response to his new seat:

He got progressively more used to it as the afternoon rolled on. There were even a couple of smiles spotted.

Will has been flexing and pushing against his new seat, just like he did the old one. The familiar creaks, bad positioning, popping bolts, falling screws, and broken headrest and tray supports were not there to respond. As Will pushes against his chair, he gets a very confused look on his face when the chair moves with him, controlled and purposefully. He gets mad when he stops flexing his legs and everything goes back right where it belongs. He gets upset, but Nate and I and all of Will's caregivers smile with one word resonating in our heads:


Tuesday, October 18, 2011

Coup de grace

Back in July, we starting trying out new wheelchairs for Will since his current (and first) wheelchair is now three years old. It has certainly seen better days. Pediatric wheelchairs are meant to grow with a child, and Will's wheelchair has done that valiantly since it was delivered to us in October 2008 (I mentioned Will's new wheelchair in my first blog post!). But when Will sits in his chair now, it is extended as far as it can go... and you can see that he is much too big for it.

Thankfully the new wheelchair is scheduled for delivery tomorrow! Nate and I are so excited. Will really needs this new chair, and we were looking forward to donating the old chair to be refurbished for another child.

That's right, I said Nate and I WERE looking forward to donating the old chair. Early this morning, I got a text from Will's CNA, indicating that he had the blowout of all diaper blowouts. She had to change his clothes and clean all the pads on his chair. But thats not so bad when you consider...

As Nate walked in the door this evening, he heard a huge crack and a thump as something hit the floor. Will and his CNA looked confused. And then everyone realized that Will had flexed so hard and pushed on his headrest so hard that he had cracked the plastic backboard of the wheelchair and broken the headrest right off the chair.

That was it... the coup de grace... the kill shot. The first wheelchair is dead. Before this, the damage could be repaired with the tightening of screws or the replacement of bolts or small parts. It is unlikely that we can donate it now because this is not something that is easily fixable (they would literally have to replace the entire back of the chair). We find the timing nothing short of incredible!

Will's new wheelchair is meant to flex with him when he pushes like this. It has flexable joints in the head rest, the seat, and in the foot rest. He should not be able to damage the new wheelchair like he has put a hurting on this poor old one!

Monday, October 17, 2011

Getting booed

A couple of days ago, I read about Kelle's adventure booing with her family. Sounded interesting to me, though I wasn't sure if any of the boys were old enough to get the concept. Basically you print out this tag, make two goodie bags for your neighbors, and once the sun sets on an evening some time before Halloween, drop the goodie bag on their porch, ring the doorbell and watch as they come out and find their surprise.

I got the bags and the treats, assembled everything, and then the bags sat on the counter as life got in the way.

With Halloween less than 2 weeks away (and the premise that we'd start a boo-ing trend that would last for weeks in our neighborhood), I finally got out the door with Luke and Matt and the bags when Nate and Will were at PT. Not the ideal situation, but what is?

I held onto Matt and tried to explain to Luke what to do. He was happy to put the bag on the porch and really happy to ring the doorbell. But he wasn't so quick in the whole "running away from the door and hiding" concept, and all I could envision was him tripping and falling down our neighbors steps.

At the first house, Luke didn't make it off the porch before our neighbor opened the door. He wasn't sure what to do, so I whispered that he should just yell "BOO!" So rather than getting hung up on the fact that the game didn't go as it was supposed to, we laughed and turned it into our own game. He got such a kick out of yelling "BOO!" and our neighbor was very happy to get her Halloween stickers and candy.

At the second house, we were surprised to see that our neighbors were already outside and decorating for Halloween! So no doorbell ringing or surprises, but they too were happy to get an early Halloween treat and stickers. And it was fun to see how much decorating our neighbors do for the upcoming Halloween season! Hopefully we start to see some more BOO tags on front doors as our effort to start some pre-Halloween fun in the neighborhood!

Sunday, October 16, 2011

Running through the repertoire

Matt has been exceptionally talkative recently, so tonight during his bath I got a video of him saying a lot of his words. If you have a moment, its a very cute video so I recommend you watch it! If you get the blog via email, go to the weblog at to check it out.

Thursday, October 13, 2011

Space... the first frontier

You know how it took us so long to unpack after we moved in this past April? Well it is taking us even longer to decorate! Thankfully, after many weekends of painting and deliberating, Luke and Will's space room is finally complete. The first room! Nate did a great job hand painting planets and asteriod belts and the sun on the wall! I'm no painter, so I did my part by finding vinyl wall clings on Etsy, a magnet board, and decorations to fit the theme! Its great to finally have one room complete, and everyone seems to be enjoying it quite a bit.

Our goal in putting so many bright things on the wall was to give Will some visual stimulation. He has shown some signs of noticing the stars near his bed, and the bright orange and yellow sun on one side of the room. Success! Luke likes to tell us that his vinyl space ship is pointed towards Earth and Will's in pointed towards Mars, and when he's mad at someone, the first threat is that you can't go on his space ship. Yesterday he told me that no one from the family was allowed on his space ship because he was mad at everyone (he didn't eat his dinner, we made him go put on his pajamas).

Luke: Mommy, you can't go on my space ship with me. Not you, not Daddy, not OT, not Matthew, not Will, and not Will's wheelchair.

Its good to know that Luke holds Will's wheelchair in such high regard! As a member of our family! I had to laugh.

Now on to Matt's room... at this pace, we'll be ready for a housewarming party about this time next year!

Wednesday, October 12, 2011

A 'Never Again' Moment

Before we take a trip, I familiarize myself with the location of the local hospital. With two kids with shunts, one of whom also has seizure disorder, I figure that its a good idea. When we're traveling farther than a couple of hours from home, I go so far as to find the closest major medical center. Preferably one that is ranked nationally in quality of their neurosurgery department.

As I prepared for the trip to central Virginia this past weekend, I did my research and found the closest community hospital in Farmville, roughly a 25 minute drive from the park where we were staying. I figured that if I needed to get there, I'd use the GPS on my phone to get actual directions.

Never again.

Shortly past midnight on Sunday, Matt woke up with very labored breathing. Screaming when he could take a breath. He was having a really hard time and Nate and I weren't sure what to do. We tried to calm him, get him to cough... anything. But nothing was changing the situation. We decided that I'd take him to the ER in Farmville. I was happy I knew there was a hospital there... but definitely didn't think it was Matt who was going to need it!

We loaded Matt into the van. The cool weather outside didn't have any effect on the terrible sounds coming from his chest. I knew it wasn't croup. I turned on my phone for the GPS.

No signal.

Same thing with Nate's phone. I tried to find our location on the outdated Rand McNally map in my car. It didn't show the hospital. I started to panic. Thankfully Matt had fallen asleep in his car seat, so the screaming had stopped. But that terrible rattly, labored sound was still there.

Nate went to wake up my dad, and thankfully his phone was getting a signal. We loaded the hospital into the GPS program, and I was on my way.

We arrived at the hospital in about 25 minutes. The moon was bright and the night was cool. We were the only ones in the waiting room of the ER. After so many years of major medical center ERs, I had forgotten what the middle of the night in a community hospital could be like. It was almost peaceful.

They took Matt's vitals quickly and efficiently. We saw the triage nurse, then the charge nurse, and then the ER doctor in a matter of 5 minutes. They were gushing over how cute they thought Matt was. He woke up when they put a pulse-ox on his toe and looked so confused. He sat in the hospital bed like a little skeptical man, with his sippie cup of water and his blanket. Staring down everyone who walked by. No smiles. Every once in a while he would reach for me and want some comfort. He only cried twice. Once when they took his ::ahem:: temperature, and then when they took a nasal swab for flu and RSV testing.

We went for a chest x-ray within 20 minutes of walking through the front door. That certainly doesn't happen regularly for us. Matt amazed the x-ray tech by sitting still for his x-rays. She got the 2 shots she needed in 2 tries. Matt's mood changed when we were waiting for the radiologist to read the x-rays. All of a sudden he realized that he was the only kid around, and that he was getting a LOT of attention. It didn't matter that it was 3am.

As we settled back into our curtain area, Matt made it obvious that he didn't want to sit still anymore. In his doggie pajamas and sneakers, with blanket in hand, he lead me on a tour of the ER. We saw the Hampden-Sydney student down the hall sleeping off his hangover, an end-stage cancer patient surrounded by his three doting sons, someone else with a broken leg getting fit with a cast and crutches. They all smiled when they saw Matt, and he smiled back. Attention hog!

The x-ray indicated that the Matt had bronchitis. The doctor called it "acute onset bacterial bronchitis" which explains to me why Matt was fine during the day on Saturday and terrible later that night. The flu and RSV tests were negative. They ordered a steroid to open up his lungs, and a breathing treatment similar to what Luke does sometimes at home (albuterol in a nebulizer).

As the doctor is explaining this to me, Matt is running away, trying to sneak into someone else's room and play with their sink. He's laughing and smiling, but still the breathing sounds terrible. As I chase after him, I hear her say that she wants to admit him. I stopped in my tracks, totally perplexed.

Me: He has bronchitis. Why does he need to be admitted?

Doctor: His breathing sounds terrible.

Me: His pulse-ox is 100%. He has no chest retractions. He conscious, lucid, and his behavior is totally consistent with a healthy 17 month old. If he was acting any other way, I would agree with you. But I think admitting him is an over reaction.

Doctor: Wow.

Me: What?

Doctor: You might not be one, but you certainly do sound like a doctor. Ok, I trust you. I'll give you a prescription for an antibiotic and a steriod, and he'll need more breathing treatments. If anything changes, come back.

It was still cool and the moon was bright as we left the hospital with our prescriptions. Matt quickly fell asleep in the car, and I had a silent drive back to the park. Everything in the cabin was still. I climbed back into bed, and it was like nothing had changed and no time had past.

But one thing certainly had changed... I will never again go on a trip without printed directions of how to get from where we're staying to the local hospital. Say what you want about Mapquest directions... but they don't tell me they've got no signal when I need them most.

Tuesday, October 11, 2011

Doggy cousins

As promised yesterday, a post today about the dogs who came along on our cabin weekend in Virginia! Of course we brought Otis. He loves a good trip in the van, regardless of the destination. Drew and Nicole brought their dogs, Bo (middle, in photo above) and Hunter (far right in photo above). Otis, Bo and Hunter had never met before, so I was a little nervous about how their first meeting would go. We introduced them outside of the lodge so that no one would feel "ownership" of the house (thanks, Cesar Milan) and things went swimmingly. Literally.

The water in the lake was still pretty warm and the dogs had a long day of hiking, so we let them swim for a bit. Hunter is a beagle - a water dog just like Otis. Bo doesn't care to swim in the deep water, but definitely enjoyed splashing around. And when Hunter and Otis would bring in a jointly-retrieved stick from the water, she was happy to meet them on shore and steal the stick from them. Then she would prance around very proud of herself as the boys looked on, dejected.

The dogs also enjoyed a lot of rough-housing together, running around the fire pit, testing the ability of the lodge's carpet to hold up to doggie nails, eating each other's food and treats, nipping, talking, hiking, and most of all, sleeping like a pack (after all that playtime, they were dog gone tired).

Monday, October 10, 2011

3 backpacks

We met my dad (Grandpa), stepmom (Grandmama), brother (Drew) and his girlfriend (Nicole) this past weekend at Twin Lakes State Park in Green Bay, Virginia. We had been planning the weekend for a while... in between Maryland Terrapins football games and autumn plans. Things get busy for us quickly once the weather cools down a bit! Thankfully, the weather didn't cool down too much! We had highs in the mid-70s the whole weekend. Gorgeous weather. Cool four bedroom lodge. Lots of laughs.

In previous posts, I have told you about us going on hikes and having Luke walk himself. It is good for his physical therapy, but it definitely slows the whole process down! There are also usually only two of us, so two backpacks is just practical. But for this trip, with more able backpack carriers and available backs, we picked up a third backpack so that we could actually do some hiking. Luke was THRILLED to have a ride. "Unca Dew" was happy to oblige.

We were a pretty big group walking on those trails! We even had three dogs with us (more on that in tomorrow's post). We all had a great time... except for when we ran into a black snake (non-poisonous) that was trying to shake its tail and look like a rattlesnake!

I was the last one in our long line of hikers, so I have a lot of butt shots that no one wants to see. Here are some presentable pics from our treks through the ever so slightly autumn-looking forest.

On the first day, we let my dad take the reins as our trail guide. He got us lost (just a little). In his defense, he'd never been to the park before (none of us had been, though). But we did have a map. Lucky for us, Luke was there on the second day to show Grandpa how to read it.

Tuesday, October 4, 2011

Finding time for fun

Sometimes when things are going really poorly, all you want to do is forget about your troubles and find a little fun to distract you. We were able to do that on Sunday, with a trip with friends to a local pumpkin patch. Unlike last year, this might have been our only trip to pumpkin pick this year! Thankfully the weather was cool and lovely, and because we're still weeks away from Halloween, there was almost no crowd.

We were relaxed, everyone had fun down the slide and in the corn and on the train, Will and Oma spent some time walking around the grounds and dancing to the music while Matt and Luke crawled through bales of hay... it was a wonderful, much needed breather. Here are some photos of our fun together.