Thursday, July 29, 2010

Quick Will update

Just wanted to follow up briefly on Will's latest round of tests... he finally had his MRI earlier this month. The MRI was scheduled because of Will's episode of left side facial paralysis in late June. They wanted to make sure that he didn't have a stroke. You never think of a 3-year old having a stroke, but it does happen.

We finally got the results back. The MRI showed no additional brain injury or blood vessel issues that would typically be associated with a stroke. So that, in conjunction with the EEG results from a few weeks ago, are pretty indicative for Will having had a seizure.

We've been keeping a close watch on him during the evenings, and he has not had any repeat seizure activity that we've seen. Let's hope it stays that way! It is entirely possible that Will has only ever had one seizure. It's even possible that he'll never have another one. In the mean time, there's nothing to do but wait. In the event that Will has another seizure at some point down the road, they'll likely increase the dosage of his neurontin (which he is on to manage pain from his g-tube). In a strange twist of medical intrigue, neurontin was actually developed to be an anti-seizure medication but isn't prescribed that frequently by neurologists for epilepsy! Will tolerates the neurontin well, but who knows if he actually does have epilepsy and the neurontin has been holding it at bay for the past year or so? I am not really a proponent of the idea of taking him off of the neurontin to see if that induces a seizure... I am sure you can understand why!

So for now, we're home, happy, seizure-free, and we know that no one had a stroke or a shunt malfunction. Sometimes when you've lived for a while, waiting for the other shoe to drop, you can't hope for much more!

Monday, July 26, 2010

July is roadtrip month

After our trip to NY earlier this month, we'd be nuts to attempt another roadtrip with three kids under the age of 4 right?! Especially in the same month, right?! Well call us nuts, then, because we spent this past weekend in the greater DC area. Nate and Chris got tickets to the Dave Matthews Band show at the Washington Nationals Park, so we decided to go over the river and through the woods, right to Grandpa and Grandmama's house for a long weekend of fun.

On Friday morning we attempted playtime at the playground near Grandpa's house... but that only lasted about 5 minutes because at 10am, it was already 93 degrees and 200% humidity outside. Ugh.

We decided to hit the local Greene Turtle for lunch to beat the heat. Luke learned all about Maryland "see-food." Oh yes, he's all boy.

Grandpa Harry was a brave soul and babysat Luke, Will and Matt by himself for a couple of hours on Friday night while Nate and I made our way to the concert. Uncle Drew and Grandmama Tammy joined him after work and the 6 of them had a fun time together.

On Saturday, we went to the Udvar-Hazy Center, which is an extension of the National Air and Space Museum at Dulles Airport in northern Virginia. It was a little bit of a hike from Grandpa's house, but very worth it because it was full of airplanes (good for Luke) and perfectly air conditioned (good for Will). We walked a lot (thank goodness Matthew is so tolerant!) and had a good time checking out the Concorde Jet, the Enola Gay, a lot of helicopters, experimental and formerly top-secret stealth aircraft, and especially the Space Shuttle. Will got to "experience" atmospheric re-entry as Grandpa spun him around and around in his wheelchair - what a rush!

We celebrated Nate's 33rd birthday that evening with a cookout (though we spent most of the time inside because it was SO hot outside) and cupcakes.

It was a great weekend with lots of laughs. Luke even found himself some new reading material (Nana Jean would be so proud!). No one enjoys getting in the car again to drive home, but thankfully we left when we did on Sunday and avoided the horrible storms that hit the DC area on Sunday afternoon. Now we don't have any more roadtrips planned for July (ha!) but we're on the road again in mid-August for a weekend at the beach! Wish us luck.

Saturday, July 24, 2010

A new channel

For those of you who don't watch Oprah, she's decided to end her famous talk show in the next year or so, and launch her own TV channel. Clearly this woman is taking on the world and winning! She's offered people the chance to host their own TV shows on her new channel, and has posted several of the best audition videos for people to vote on.

Laura so kindly posted this link on Facebook and I felt compelled to share it. Zach is a young man with cerebral palsy, a sense of humor, and a sense of adventure (just like Will, only older!). Check out Zach's audition tape! Be prepared to laugh. He wants to host a travel show to prepare people how to travel when things don't go as planned (someone steals your luggage, you end up in the wrong place, or having a disability). If there is still time, please vote for Zach! What an inspiration.

Tuesday, July 20, 2010


Like most old folks I know, I think popular music is crap. I stopped listening to the radio (other than NPR) around the time that I got to college because I really didn't like the music. In college, I listened to my high school CDs and picked up new music ideas from this cute college DJ that I knew (and eventually married).

These days, that college DJ doesn't listen to much new music either, so I have to rely on television shows to introduce me to good new music. Good thing for me, C.S.I. had an episode on earlier this year with Rascal Flatts co-starring. I'm not the biggest country music fan in the world... I listened to Shania Twain for a while, danced to a Dixie Chicks song as the first dance at my wedding, and attend Toby Keith concerts once a year (mostly for the... um... scenery). But aside from that, country music isn't something I pay too much attention to.

That might start changing, now that I saw the episode of C.S.I. where Rascal Flatts performs their new song Unstoppable.

Song lyrics don't stop me in my tracks too often, but the lyrics of this song really made me reflect on my life and the struggles that we've been through with Luke and Will over the past couple of years. I liked the song so much that I downloaded it from iTunes and play it on my iPod whenever I am having a rough day or feel very challenged or downtrodden. It is uplifting and puts me in a good mood and I sing along at the top of my lungs.

And if you saw me driving by, singing along to my country song, you'd think it was totally fitting that I drive that big red pick up truck every day to work (now that Nate's got the mini-van at home)!

So in honor of feeling positive, here are some of the lyrics from Unstoppable:

You find your faith has been lost and shaken
You take back what's been taken
Get on your knees and dig down deep
You can do what you think is impossible
Keep on believing, don't give in
It'll come back and make you whole again
It always will, it always does
Love is unstoppable

Sunday, July 18, 2010

Our trip to NY: A photo montage

We left the house on a Wednesday night. The van was packed tightly. When Matt had a major diaper blowout just 45 minutes after starting our journey, there was no where to change him but the front seat!

After driving 5 hours, we stopped for the night at a hotel. Luke is in an "I love showers" stage, so he felt compelled to test out the hotel shower. It was great!

Will and Matt waited patiently while we packed up the van again the next morning, to complete the remainder of our journey to Grammy and Papa's house.

Luke literally fell asleep with chicken nuggets in his hand. I could not resist the photo op. Do not judge me for feeding him Wendy's!

Will and Nate enjoy an absolutely gorgeous afternoon on the deck at Grammy and Papa's. The temperature and view were perfect!

Will really enjoyed the summer temperatures in New York. When we arrived, it was in the high 70s. We got to take in the ending of Cousin Joe's lacrosse game.

Luke stretched his legs after a long journey to NY by running around on the lacrosse field after the game, emulating his hero (Daddy!).

Luke and Will slept like champs during our trip.

Matt and Papa enjoy a pool-side chat, discussing the upcoming Syracuse basketball season.

Will and Nate in the pool. Gosh, this kid loves the water!

Luke and his new best friend, Morgan

Nate and Matt enjoy the sunset on the deck.

Luke feeding the goat after breakfast at Green Brothers.

Will and Nate getting to know a friendly donkey.

Luke and Grammy holding hands.

The boys in the bouncy house at Cousin Gabe's high school graduation party. What a great time!

Matt and Aunt Denise share a conversation about the ins and outs of Italian cooking.

Luke sneaks a snuggle with Great Aunt Grace.

Nate and Will spend some time together at our mini-Loss family reunion in Blairstown, NJ on July 4.

What's better than this?! Will and Matt enjoying a nap on a blanket in the shade.

Luke was busy trying to steal Uncle Drew's car.

Great Grandpa Milt and Luke share a hug goodbye.

The Loss clan celebrating the 4th of July and Great Grandpa Milt's 86th birthday!

Matt enjoyed his new rattle from Great Grandma Mary.

The boys celebrating Grammy's birthday with a yummy cake from Wegmans!

On the way home, we stopped halfway to spend the night with our Wyman cousins in Virginia. Here, Will and Cousin Brogan enjoy a silly book.

Nate, Luke and Cousin Cal spent some time with their lacrosse gear.

The cousins! We drove the rest of the way home to NC shortly after this picture was taken. What a trip! We had a lot of fun, but were certainly happy to be home!

Wednesday, July 14, 2010

Mommy, let me just tell you...

Each day when I get home from work, I give and get kisses with all my boys. We talk for a bit, and then Matt and I head upstairs together so that I can get changed and he can get some food. Over the past week or so, he's gotten pretty adept at holding up his head and talking at the same time. It is like he wants me to know all about his exciting day with Daddy! I was lucky enough to get video of one such "conversation" this evening.

Matt is growing up so quickly! Almost three months old and already chatting up a storm. In addition to the head and neck control he is gaining, he also surprised us from rolling from his back onto his front twice this week. I don't remember time passing this quickly with Luke and Will!

Thursday, July 8, 2010

EEG Rock Star

Will's EEG was this morning, bright and early. The doctor moved it up from the middle of the month so we could have a better idea of what was going on with Will sooner. We were happy not to wait any longer.

Will was as patient as could be expected as the technician was attaching the EEG electrodes to his head. He certainly didn't enjoy himself and could barely be soothed by the typical means (even the Wheels on the Bus wasn't working... that's bad!).

Once all of the electrodes were attached securely, the tech began the EEG. Will was pretty patient during the test, which lasted about 20 minutes. He watched the Weather Channel - he apparently likes the voice of the guy who does the 'Local on the 8's' much better than the voice of Stephanie Abrams. Whenever she would speak, he would get agitated. Glad I'm not the only one...

Will even did well when they placed a strobe light in front of his face and blinked it at varying speeds. Honestly, at one point I felt like we were at a rave because of the strobe action in the room. The only thing missing was the heavy bass music and glow-sticks.

A couple of hours after the EEG, I received a call from Will's neurologist. He indicated that Will had almost constant vertex and central spikes on the right side of his brain, which were clustered around the area of the brain that controls the face (this makes sense if you read back to the description of what happened two Sundays ago). This is also the area of Will's brain that had the most damage from his brain hemorrhage shortly after birth (and also causes his cerebral palsy).

The neurologist kept calling the EEG results 'interesting,' which I still don't know how to interpret. However, the net of his call was to say that based on the EEG spikes, it is most probable that what Will experienced was a partial complex seizure. There is no way of knowing if Will has had a seizure before or predicting if he'll have one again.

Once a person has had a single seizure, the probability of them having another one is 30-40%. Once a person has had two seizures, the probability of them having another one jumps to about 80% and the person is officially diagnosed with epilepsy.

Because we only know of a single seizure at this time, our official orders are to watch Will and see if he has another seizure. We're also going to keep the MRI appointment for later this month to determine if that reveals anything new. If Will has another seizure, then he will go on anti-seizure medication to control any further seizure activity.

So while this wasn't necessarily news that we were happy to receive, there is some comfort in knowing what occurred. We're getting pretty good at this 'wait and see' thing...

Saturday, July 3, 2010

Shiny happy people

One of the things we love to do with Grammy and Papa when we visit Binghamton is take family photos. There is a portrait place here that just does a fantastic job. They are always so patient with us and the photos turn out great because of it! So in between visiting all of the NY relatives and loving the low-humidity weather during this 4th of July weekend, we stopped in to introduce Matthew to the family photo tradition. Here are two of the current favorites! Can't wait for Aunt Kylie's return in the next photo op!

They also took some cute individual shots of the boys. Here are three of the best ones - ordered Luke, Will, then Matt (who looks a little concerned with this whole photo taking thing).