Goonies Among Us (One Family versus Cystic Fibrosis)

Dear Blog

2011-12-22T10:04:00.000-05:00

Dear Blog,I am truly and humbly sorry for neglecting you. You are the withering plant in the corner whose leaves are dangling and drooping. You're the empty dog bowl. Discarded, cast aside, and left to grow with no nourishment. I have dropped the proverbial ball.

Perhaps in this new year I can get back to clever observations, rants about injustices, charming pictures of my charming children, things to consider and all weird notions that strike me? Will there be time? Not likely. But, I will do better to keep you going so that the children will have a repository of Mom...

I have wronged you, oh Blog, and I am sorry.

Yours truly,
Bad Goonie

Fun with Photobooth

2011-10-21T17:34:00.000-04:00

These are some of the fun pix the kids have made with Photobooth!

Baby Cooper Sings!

2011-10-15T06:25:00.000-04:00

Ooh, this is a classic. Behold, Cooper the shrimpy--midget, signing Sponge Bob!

Can He Swing From a Thread?

2011-10-15T06:01:00.000-04:00

Take a look, over head, hey man, there goes the Spider Man...

Hodge Podge

2011-09-21T17:21:00.000-04:00

I haven't updated this blog since August and it certainly feels like that on this side of the screen. Can you say "too busy?" Oy.

Summer wound up with a bang--trying to squeeze as much juice out of it as possible--. We are now fully immersed in school and with it, soccer, soccer, hip hop, soccer, soccer and a little bit more of soccer. Trevor is playing both travel soccer and school soccer. I think his ability to even consider doing this is a testament to his improved energy levels thanks to Dr. Lapey and his June clean-out. Holla!

Cooper is also playing travel soccer and doing a hip hop dance class with Gracie. Gracie is taking on just the dance class for now. We'll fill her schedule more when the soccer schedule diminishes in October.

That which follows is a hodge-podge of random moments during the past month...enjoy!

Gracie Turned 6!

2011-08-15T13:24:00.000-04:00

A few highlights from Gracie's 6th Birthday party...we all had a ball, and lots of cake.

You're a fiery, fantastic 6 year old, Gracie. We love you so!

Sea dogs with the Londoners. What a fun Summer!

2011-08-02T07:14:00.001-04:00

Dear Riders...

2011-07-15T06:54:00.000-04:00

It's gonna be hot out again this year for your bike ride, probably humid, too. I'm guessing that may make it uncomfortable. If a wind kicks up it will surly dampen your speed. If I could make it easier for you all, I would. But, life isn't like that now, is it?

By riding and raising money for the CF Foundation you will be encouraging and funding research. Research that just might make life a little bit easier for people with CF. We sure know that the wind will kick up from time to time and it will make us pedal harder and lean into it more. Luckily for us, Trevor is tough and isn't afraid to take it head on. And we sometimes have people blocking the wind for us...like you guys!

Please know how much it means to us that you will be riding to change Trevor's (and all CFers) future. It's a big deal. What you are doing is a big deal.

We hope that you get a tail wind to help blow you in safely.

Cure CF.

Not awake after surgery yet, June 2011

PICC line, gateway to the heart (& body), June 2011

Memorial Day Parade!

2011-05-28T09:59:00.000-04:00

It must be the end of the school year because the Memorial Day Parade in town walked past.

Leading the way of the small showing of baseball & tee ball devotees was none other than Gracie, in her first parade appearance. Rumor has it that Cooper broke the Little League banner and that may explain why he wasn't visible, cast to the back and shunned... :)

Ahhh, life in a small town. It is the little things that make you appreciate the larger picture. This is a tradition that I do adore.

Next up: Amanda, from NJ, special guest coverage

14

2011-05-11T06:12:00.002-04:00

May 11, 1997

Team Trevor RAWKS!

2011-05-10T05:59:00.000-04:00

That's right, here you are last year...you sure rocked 'em Team Trevor. And, you're such a fricken, great group of people~serious sweetness going on. Thank you, from little ol' us.

Breathe Deeply...

2011-05-09T08:04:00.000-04:00

Trevor has been doing nebs since he was a wee little lad. Notice Simon in the background of the picture? Oh, we miss him despite his crazy Jack Russell antics. If we could CURE CF we could stop the nebulizers. We wouldn't miss them.

Notice we made Trevor stop roller blading in his baseball pants and Patriots jersey to do a neb treatment below? Fine fashion sense, huh?

Even does his homework while nebbing, multitasking at its best.

CURE CF!

Our Second

2011-05-06T06:40:00.000-04:00

Great Strides Walk, that is. The first one was held at Odiorne Park and was lovely. We decided to move it into Portsmouth proper to garner more awareness through visibility. You'll notice that all the people in this picture are not dressed for delightful May weather. It was 36 degrees out, pouring, and then all that rain even turned to snowy-slush for a while. It was wretched.

But it happens to illustrate why we are one of the luckiest families out there~people showed up despite the weather. They turned in their donations/collections, had some coffee, then called it a day. We still raised money. We smiled even though the weather Gods were not smiling upon us.

Team Trevor is the greatest group of individuals. Do you ever ask yourself why certain things in life happen? I ask myself that an awful lot. I'm pretty sure the universe is unfolding as it should~even though I may not like the cards sometimes. CURE CF!

The VEST

2011-05-04T06:02:00.000-04:00

The VEST machine was bigger than he was when he started using it. It uses air to do high frequency chest wall oscillation, or CHEST PT. And, you would think that it's the banging of air that pops the mucus off the chest walls, but it isn't. I have read that after using is for X amount of time it actually stimulates the release of a certain hormone that triggers the release of fluid to the lining of the lungs~which then lets the cilia stand up again and wave and move whatever mucus is sitting on them. Neat technology, huh?

CURE CF!

CF Lungs

2011-05-02T06:00:00.000-04:00

This is what CF looks like in a child's lungs. All the white stuff is scarring and mucus plugs.

This is what non-CF lungs look like.

CURE CF!

Swing Batter, Batter Sa-Wing

2011-05-01T07:25:00.000-04:00

A day of no hits, for the boys-that is...fun to watch, however!

Cooper in action

Trevor in action

How Gracie spent 8 hours at the field

April Vacation Highlights

2011-04-25T13:21:00.000-04:00

Phew, what a week it was!

Epic Sunday
Marathon Monday
First Wentworth Charities Golf Meeting Tuesday
Trevor sick Wednesday
Off to NJ Thursday
NJ & NYC with the Trevors Friday
Rainy drive home Saturday
Easter Sunday

Again, phew!

Some pictures to match the days...

Steps of Columbia University

Lunch at Seinfeld/Suzanne Vega's Tom's Diner

Uber Epic-ness

Trevor & Tim K, Mile 20

Tia Krystal fumbles unbreakable egg!

Bunny Cooper awaiting egg entry

Victorious Trevor Team Member, running grab!

You don't do Pie in the Face on Easter? We do.

Egg on spoon races, too!

Out Run CF Day

2011-03-20T13:07:00.000-04:00

Junked up on adrenaline even though I was only running in a one person race I twitched through the morning...9:55am, five minutes until race time and no sign of Mom and Cooper. Cooper had spent the night at Mom's house and they were coming to cheer me on. Of course the phone rings and it's never 'normal' here. Mom and Cooper had been at a full stop waiting to turn left into one of our roads and they were rear-ended. Mom's car at stand-still, other car going around 25-30mph. Pause plans...

Police, fire truck, clean-up, tow, Mom off to ER for Xrays (very scary as she has a rod & tons of hardware put in her neck and the possibility of major problems very real).

Race delayed one hour. Cheered out, cheered at 2.7, cheered at end. My own finish line tape to cross. Done. Carried along on adrenaline. No knee twinges, not as much lungs as normal. Guess it suits the race.

Would do it 100 times if it meant I could take away Trevor's disease. I hope he knows this.

Leaving our house

Feeling good before race

One of his biggest fans

Almost at the finish line

Pushed it and tired now

Cooper's Sign

Gracie's sign

Trevor's sign

Durval's sign

A Peek Inside

2011-03-17T13:35:00.000-04:00

We've added an ENT to Trevor's roster of doctors now that he is being plagued by sinus polyps. I'm pretty sure he has been stuffy because of the polyps for over a year. We've been treating them with nasal steroids (you should see the booger roid rage!) and it's not having a profound effect on them, sadly. The hope is to stall having them removed surgically...we see Dr. Keamy at Mass Eye & Ear again in two weeks. For the time being we will share some pics of his last visit.

This first picture is of a LONG, flexible camera being inserted up Trevor's nose. The second picture is what the camera is seeing. Pretty cool, huh? Gotta love technology.

What did you do today?

2011-02-28T15:34:00.000-05:00

Today, our 9000th snow day (or so it feels like it) we:

Did Trevor's CF treatments
Made breakfast for 4
Did the dog/guinea pig food extravaganzas
Made lunch for 3
Sewed pencil cases as craft project

sewed a skirt for Gracie, while the sewing gear was out

made cookies

painted three faces

And, it's only 3:25pm...there's still lots of day left. What shall we do next?

Happy Birthday Cooper!

2011-02-24T07:21:00.000-05:00

You were born at 7:38am today eight years ago...my how that phone call elated us! You are the sweetest boy, a natural ham, Lego builder-extraordinaire, and oh so fast running. We cannot wait to see what you add to the world at large--you have so many wonderful talents. Happy 8th Birthday, Cooper, we love you soooooo much!

Happy Birthday Trevor!

2011-02-22T05:12:00.003-05:00

Where has the time gone? Why has it gone by so quickly?

You are such a big boy now, I can't believe you are on the cusp of teenager-hood. We are so proud of you. You have so much on your plate and you manage to get it all done--sometimes with a holler, but you do get it all done. You are smart, funny, athletic, kind-hearted, and sweet. We wish for you a year filled with good health, mostly laughter, fun with your friends, and plenty of time with us (yes, we are selfish when it comes to you, Cooper & Gracie). Happy Birthday Trev, we love you.

A Three Way

2011-02-19T09:45:00.001-05:00

Birthday party, that is! 41, 12, and 8, respectively. A gym party is a good solution for the dreaded winter bday parties...Happy Birthday Lovelies!

Recap...

2011-02-16T15:58:00.000-05:00

or, how uninspired I've been to write...Here's what's been going on:

We celebrated Durval's 41st birthday and took his cake down to the Peternell's to enlarge the festivities. Kids love candles and are probably future pyro's.

And then Gracie's tooth FINALLY fell out...the dentist had encouraged us to encourage her to get it out to make room for the adult tooth that was mostly in behind the dangler...it took over three weeks for it to give up and rip out.

Trevor must have been worn out during this month as you can see from his fantastic nebulizer form...sleeping, jiggling, and nebulizing...a keen skill that will take him far.

And Cooper, ever the Lego maverick, designed his own specs...

A Great Sledding Day at Merezi's

2011-01-17T07:52:00.002-05:00

From Movies

We blazed a trail at Mom's yesterday. Up and down. Up and down. Hearts thumping. A few observations: Gracie is fearless, Cooper enjoys ALMOST crashing into things, Trevor snowboards with his eyes closed, I was in it for the workout, and baby Timmy does NOT like snow in his face.

Shake Yo' Groove Thing...

2011-01-03T06:04:00.000-05:00

A little fun at Merezi's yesterday...go Cooper!

2010-12-31T20:14:00.001-05:00

Skating the year away

2010-12-31T20:07:00.000-05:00

cure cf
c c salema

A very merry to you and yours...

2010-12-25T18:11:00.000-05:00

2010 Xmas

They got busy

2010-12-25T05:26:00.000-05:00

We forgot to make reindeer food, you know the special stuff for Blitzen? He doesn't like carrots...he prefers oats...this is the rest of the stuff for Santa and his merry crew. Our merry little crew left him a note...

Santa's Goodies

"To Santa, I Love You Santa, heart Gracie," and For Rudolph only (the partially cut carrot that Cooper insisted Rudolph preferred). And lastly, "love Sant (sic) from Coop-a-loop."

What a super lucky Santa!

Santa's full spread

MERRY CHRISTMAS!

Oh Mighty Isis...

2010-12-15T06:59:00.000-05:00

Shazam! Seriously, do you remember it too? I remember watching it but not much more than that...According to wikipedia "Isis aired on CBS from September 6, 1975 to September 3, 1977 (15 episodes in first season, seven in the second, totaling 22 original episodes) as part of the Shazam/Isis Hour." Which makes sense why I kind of remember it and kind of don't...8 years old and we had good role models. I can only hope that Gracie will have good role models (who can save the world) when she is 8 and not the MoxieGirlz of today.

Christmas evolving 2010

2010-12-12T11:35:00.002-05:00

Some highlights of Christmas as it is occurring this year...

Molly & Hobbes

2010-12-12T07:42:00.000-05:00

It seems like most days I spend too much time talking to the dog and the guinea pig. Crazy, perhaps. However, dogs and guinea pigs make great companions--loving & happy always. Even the darn guinea pig will respond to talking now with his own squeaks and churtles.

When we feed Hobbes we get down close to the pig door and make him come to the opening. Talking, luring with frothy leaves & crunchy carrots, eventually he walks right up. I think the dog has been watching this twice daily ritual with passive interest. However, lately, Molly has been coming up and standing right next to me while I feed & scratch the pig. After I close the door the pig will still be standing there sniffing and squeaking. The dog will hover also and whine & sniff, too. It's the funniest thing to see two black creatures, each with their own white spot (Cooper & Gracie picked out Hobbes for Trevor--we're pretty sure Cooper was going for the Darth Vader pig look and Gracie picking to match Molly the dog), standing nose to nose, communicating on some level.

The question is, is Molly wanting to play with Hobbes or kill-shake Hobbes? And is Hobbes telling Molly to take a hike, so to speak, or truly curious about the fellow black creature staring into his cage...if animals could only talk.

Harumph!

2010-11-27T12:12:00.001-05:00

I ranted on FB a couple of weeks ago that our insurance company had denied covering a nebulized med Trevor was supposed to do to help combat what his lungs grow. Usually this particular medicine is only used as an IV med. Trevor's doctor wanted us to use it off-label as a nebulized version. It would have to be compounded specially by a special pharmacy so that he could inhale it. The insurance company said 'no'. We still filled it for $112 because it seemed worth the cost to see how it would help Trevor versus putting him on an oral med that might have caused his body to have another weird immuno reaction.

The thoughtful insurance company sent us a denial letter which said to submit Phase 2 medical studies/literature to support the off-label use of the med if we wanted to fight. I had sent Trevor's doctor the only reference to this type of use a while back and I still had the link to the paper. So I printed it out, scribbled notes on it with circles and stars and away it went.

We got a letter yesterday from the insurance company saying they agreed to cover one month of the med. I wonder how many people don't think to dig & send things in? I was just happy I had a scientific study on hand that was relevant. Sometimes the wee mortals do win. And, even big insurance companies can see the logic of a small upfront cost to, hopefully, avoid a visit to the hospital...

Post Rock n' Bowl Haze

2010-11-21T06:27:00.000-05:00

Four hours of sleep is going to make for a long day, but it's nothing when I think about all the medical things Trevor does daily. We didn't get home until 12:30am, quite possibly the latest he's ever stayed up. Usually, he'll get sick when we take away measured rest times (like sleep), so we will be having a couple of slow days to play catch-up.

For those of you who help with RnB, whether you are in a band, working the raffle table, PA, lights, stage managing, any and all parts of the machine--please know we truly salute your gesture. Life is busy, you have families and places to be~yet you chose to spend the night crusading for a cure. Selfless heroes.

Patrons and fans, the same thing holds true for you, too. You chose to spend your money and time to be at the Rock n' Bowl and it wouldn't happen without you~we cannot thank you enough!

We look forward to some much-needed improvements in CF medical options~there has only been one new CF drug approved by the FDA in the past 10 years. Hopefully, that will change in the upcoming decade. Trevor deserves a chance to feel well and enjoy his life fully just like you and me.

Thank you for choosing to be on his team! We are truly blessed.

Trevor thanks you

One More Day Until Rock 'n' Bowl

2010-11-19T10:01:00.000-05:00

Last year's trip to Rock n' Bowl involved stopping at Exeter Hospital's ER with Gracie to make sure she didn't have a concussion...really. Things can only go up from that, right? Can't wait. Hope to see you all there.

A Landmark, two landmarks

It's That Time of the Year Again...

2010-11-03T12:13:00.001-04:00

One of our most favorite events of the year, where we get to catch up with old friends and make new ones...Filled with debauchery, bowling, and talented tune-ers. Music, bowling & beer, what more is there?

Rant, beware!

2010-11-03T06:46:00.000-04:00

Disclosure, rant in progress:

Mediocre is not good enough. A school for the 21st Century? How about a few courses for the 21st Century and a core curriculum that graduates scholars to top level colleges and universities?

Oooh, and, why vote to spend more $$ on the rec center when we could have spent all the money they've spent thusly and just KEPT FRISBEE OPEN? Wasn't the argument that it was going to cost too much to refurbish (roof, heating, etc) so why keep it on the books? Now it's just on the books, only more so!

And while I'm ranting, can the town please put in a traffic light on 236 to help break up the Navy Yard traffic? I think they should make a bridge directly there from the NH side since it's in NH, right? No reason we should endure the endless traffic and garner no state revenue from it, right?

Oh, and why the heck didn't we pass the pay as you go garbage program? What ever would we have done with an extra $500,000 in our town?

Oh, and can we please fix the soccer field the town built incorrectly so it can be used? It's been sitting there with no money to fix the building errors...

Oh, and can the town offices, the library, and the dump all please get on the same schedule as far as days you are closed? It might make sense to make it easy to remember...

Oh, and can somebody please ask the state for more money from the outlets? If we have to endure the traffic/drivers we should get more money from the state for shouldering the headaches (see navy yard comment above)...

OK, I'm feeling a little better now. Thank you.

Tricks & Treats!

2010-10-31T07:30:00.000-04:00

Trick or Treating night with an open house = fun! Tonight is the best parade in Ptown and we are very excited!

Who-do? Voodoo.

Serious stock floor candy exchanges going on

Best Buds

Timmy was not happy for a moment

Grown-up tricks & treats

Eddie Munster is that you?

Moxie Bat

Aww...you guys are so cute!

Motley Crue?

Scary ZDawg

Bonfire Night

2010-10-23T09:00:00.000-04:00

We enjoyed the most lovely (COLD) evening at Mom & Stan's...

Fire-cooked hot dogs, s'mores, twice-baked potatoes, mac n' cheese, salad (no takers, too cold), Cheetos & chips...absolutely delicious!

The winds died down and at the end of the evening the moon emerged. The kids had fun putting different things into the fire including, Kleenex, paper plates, a plastic cup (pulled out before they breathed in the chemicals) and even boys arcing pee into the fire.

It was a magical evening. Thanks Mom & Stan!

Running or some divine form of torture

2010-10-12T06:43:00.001-04:00

I've been running. Technically it should probably be referred to as 'jogging' but for the sake of identification, we'll go with running. I was an athlete in a past life, like 20 years ago (I hate how easily and how often this expression pops out these days). I played sports and liked them. I like the competition. As with nice skin and muscle tone, appreciating the ease with which your body performs athletics at a young age is oftentimes overlooked...not any more.

Running sucks. It's slow and boring and painful. Yet I keep doing it. I am determined to conquer 2 miles without dying each time. It's been 3 months and I'm still not there. How is that possible? I am of the opinion that a body is a machine. Feed it well, take care of it, it should do what it's supposed to do. I've told my body to get on board with this running stuff because I'm not stopping. Comply or else! It might be trying to, I'm not sure yet.

I know I've gone from doing a 1/2 mile run to 1/2 a mile walk, alternating for 2 miles. Then stretching those intervals so that running happened more than walking. And now, I can run two miles in a row...but it still hurts. The only good thing is that it's not my surgerized knee that's hurting. It's my lungs and my legs and my sciatic nerve on one side. But, I'm not stopping. My body will comply or it will find itself miserable for a long time.

I may even attempt a third mile. Who knows? All I know is that when I was in high school I'd go running. Most days I'd run a mile or a little over it. Now, at twice that age, I'm running farther than back then and that, to me, is a success. If you see a gasping, slightly bent-over person running the local streets, don't look too closely or you might see the pain of the run. Or, you might see the determination. Oh yeah, and should Trevor ever need one of my lung lobes, I am making sure they will be in fabulous shape for him--and able to move lots of air.

Catch Up or Ketchup?

2010-09-29T08:31:00.000-04:00

It's been too long...and I now have no excuse for not having time to post updates since I'm home a lot by myself (ahhhhh....). This is an amalgamation of the rest of the summer, a bit of it all. We're now fully into school, homework, gymnastics & soccer--all while attempting to practice good time management. And, Trev has a Dr. Lapey visit tomorrow so we are looking forward to seeing if his PFT's come back up or if they stay down where they were--in which case he'll, no doubt, be ingesting some lovely, gross antibiotics while Mom & Dad do a "please-don't-react-to-the-meds-immune-system" dance. Stay tuned...

Lemonade & Ice Tea Stands abounded this summer...

Our annual trip to Vavo Tina's house...always fun trying to get Trevor's equipment to work in a house that isn't running enough power...and his vest broke while we were there. It was still fun and we rode the bike trail several times, too.

A lovely visit with Pop Pop. From one baseball player to the next...working on grips...

Gracie's week of Tidewater Camp...they put on a circus for the parents on the final day...

And our lovely Ruesswick/Stone's visit..oh how we miss them...

(notice that a boy can even turn a piece of delicious fougasse into a weapon...oy)

Happy Fall to all! Bring on the month of the best holiday ever--Halloween!!!!

T'is the Season...for Butterflies

2010-09-20T15:30:00.000-04:00

Butterfly Boy

Butterfly Girl

Metamorphosis

I'm pretty sure that even once the kids are past the 'study butterflies' phase of school that we will continue the tradition...it's so wonderful.

The Big Day...

2010-09-03T19:54:00.000-04:00

Before Gracie's Big First Day of Kindergarten...Only pic of all three. They were up Early and all were excited to go off to school today, or to see Gracie go off to school--still not sure which.

All Three Kiddos Before School

Exiting the bus after school...still smiling...

Giving her biggest bro' a celebratory hug. Apparently Cooper let her lean on him, hug him, and kiss him today...what a sweetie to help his little sister when she needed it. Phew.

Joyful big brother hug

Cooper's in 2nd Grade

2010-09-01T07:57:00.000-04:00

First one off to school today is Cooper! Followed tomorrow by Trevor and Gracie on Friday!

Uncle Pat's Boat

2010-08-24T10:17:00.000-04:00

Wow did we have fun! We went up to Yarmouth on Saturday to visit with the Simmons clan. We enjoyed a boat ride, fishing, tubing & seal sightings. Then we went back to their house and kayaked and devoured a yummy BBQ. All the little cousins got to play together and celebrate each other. Perfect ending of sparklers...thank you Simmons greats--you guys sure know how to make a day fun & memorable!!

Gracie with Patrick in the background

Cooper on the front of the boat

Trevor & Najee, cousins and buddies

Happy Fifth Birthday Gracie!

2010-08-14T08:32:00.000-04:00

You gorgeous baby, you smiley tyke, you willful waif, you lovely little girl.

8 days old

Don't be a Cat in Kittery

2010-08-12T07:53:00.004-04:00

The last 2-3 weeks around our yard have been too dramatic for my liking.

A wobbly raccoon stumbled along the outskirts of our yard by the road. We happened to be driving by when all of a sudden all the jaws in the car dropped simultaneously and a collective "what?" erupted. Why a raccoon in the middle of the day? Uh oh. That can't be good. Had I read about this, heard about this or, oh yeah, seen this go down before many years ago at Mom's house in Kensington...

What to do? Monitor it of course. It walked through the neighbor's yard and vanished. Time to call the town to see if the animal people could help. Wrong. Turns out Kittery is not only backwards in how to run a town but also in how to help an animal. The dispatcher at the police department gave me the option of having a cop come out and shoot it or no help at all. What? Really? Nobody wants to see what's wrong with it? Or perhaps track whatever is wrong with it? Oh, I can call the Maine Dept. of Animal Gaming-whatever-you-call-it? Ok, let's try that. Of course, no answer.

By then enough time had elapsed for another neighbor to call the police and then "Bang." One dead raccoon.

Monday morning our dog is barking and barking and barking and driving me crazy. Took a quick walk outside to scold her and Voila! there is a cat sitting on the ground not moving and not very bothered by the barking dog. Put the dog in. Call the dispatcher again and guess what? Kittery's animal welfare (what a misnomer in reality) person won't help cats. What? Seriously? Just dogs can be helped? Oh great.

Get empty dog carrier and towel, put on gloves, scoop up cat and pack kids into car to go to local vet for help. Mewing cat sounds are freaky. We are not cat people. We like dogs. Vet says sorry can't help you unless you want to foot the bill. What? Again, learn that Kittery won't help cats. I just can't believe this. Will the SPCA help? They don't know so I get the phone number and prepare to go charging off to the next place. One nice lady who must be the boss or a vet asks if we have 5 minutes and she'll take a peek at the cat. Off they go. She returns and will keep the cat because it is in distress. No kidding. And, many people have lost an orange tabby cat.

I learn from her that all surrounding towns will help both cats and dogs. The towns contract with this particular vet and reimburse them a mere pittance. Then, the state reimburses the towns. Kittery, however, backwards as usual, won't help cats even though it appears that they can get funded by the state. Thank goodness this lady helped the cat. It seemed to possibly have rabies, although I'll never know. Doesn't anybody in this town care about a possibly rabid raccoon and a possibly rabid cat all in the same neighborhood?

If you're a fellow townie, please write our counselors. Wouldn't you like to know your cat would be helped if something bad happened to it? The nice lady at the vet first told me to drop the ailing cat off at the town offices...maybe next time I will.

Uncle Buzz

2010-07-31T07:43:00.002-04:00

My Aunt, whom I haven't seen in a million years posted this link on FB. It's of my Uncle Buzz, my Dad's older brother, who had some hits during the 'oldies but goodies' era. Archiving this here so I can show the kids someday when they might appreciate how cool it must have been to be at the forefront of rock--

Click Here for Link

Hoping never to see this in person

2010-07-29T20:01:00.002-04:00

This is what a lung transplant scar looks like, you have one on each side. Thank you for sharing this, Piper! Cure CF, seriously.

2010-07-26T13:50:00.001-04:00

Mystic

Pictures from the ride

2010-07-22T14:14:00.011-04:00

Here are some pics from the weekend- sorry they aren't in order.

This is John Carroll-who is our Team Dunkin' Captain. He gave Trevor the award Dunkin' won for most money raised. Thanks John!

If you look closely-that is Katie, Olivia and Molly behind Jason and I as we leave the Kittery rest stop on Sunday.

Christie and I at the Kittery rest stop.

Max, Isaac, & Durval at Kittery's rest stop

Followed by signs by the kids that Durval didn't see as he rode through Kittery...

And, Durval's latest tattoo...quite a statement, huh?

At the finish with Gracie

Trevor with Uncle Isaac after the ride

Isaac & Max arriving Saturday.

York's rest stop that was badly marked and many people missed...

At the Hampton rest stop, Lori in the forefront

Riding!

Team Dunkin's pre-ride

Team Dunkin' Group picture

Getting ready

Durval, Isaac & Max

The Ride - Part 3

2010-07-21T22:16:00.003-04:00

I roomed with Isaac and Max and all 3 of us set our cell phone alarms to go off at 5am. It was pretty funny when all 3 went off, I think we all had the same alarm tone. We were at breakfast right at 5:30, back to the rooms after that to get dressed and pack up. We were outside and getting water by 6:30.

Team Dunkin' leader John Carroll had the team leave right at 6:45-not sure the C.F. people were very happy with that, but I was making sure my tires were ok, when about 10 people from our team left. I knew they wanted to head off as soon as they could to try to take advantage of the cool morning with no blistering sun beating down on us, but was not prepared for them to leave right away. Isaac, Max, Jason and myself left a few minutes later.

It was nice when we left. The weather wasn't hot, it was just right for riding.That lasted until we arrived in Wells. It was getting hot. By the time we reached York, it was officially HOT. I had trained by riding on 103 in Kittery into York. As I mentioned earlier- I hate hills- there was one hill I was thinking about in York, I wasn't sure if I was going to be able make it up the stupid thing. When I left the York rest stop, I left with Jason and Jack. I was concentrating so hard on that hill, I didn't pay attention to the other guys and left them behind. Once I arrived at the hill, I barely made it up, but once I did, that's when I knew the rest of the ride I could manage. Or so I thought.

Once I arrived in the Kittery rest stop- I failed to mention on the first day when we were riding through Kittery, Christie, Trevor, Cooper and Gracie were on the side of the road holding up signs. The kids were jumping up and down, especially Gracie. I couldn't read the signs, but that was so awesome for me to see, that was the best part of the ride. I loved it. It was a surprise and motivated me that much more. Christie, Laurie(her Mom) and Shelley were the ones at the rest stop. Katie, Olivia and Molly were there as well. They cheered as riders came into the rest area. That was very cool. It's nice to have people cheer for you- no other rest stop does that. They do it for just about every rider that comes along, and as stupid as this sounds, it makes you feel good. How often do you have people cheering for you? What a great thing. I think they should do that at all the rest stops.

Oh yeah- once in Kittery I met up with Jason and Jack and we ended up riding the rest of the way together. I thought we would have no issues once we were done with the hills of the Rt. 103 stretch, but that was not the case at all. The WIND was a huge factor. Once we arrived in Rye the wind started to pick up and it didn't let up until we were leaving Salisbury. I have told you that I hate hills, well, I hate wind also. We couldn't go anywhere. You know how awful it is to be riding, trying to move and you are barely going anywhere?!! We were going against the wind the whole way and it was not fun at all. I knew it would be windy, but not this windy.

Ok, we made it past the wind and I ended up staying with Jack, but we lost Jason along the way. I think we lost him in Salisbury. He was with me then the next time I looked back he wasn't there, it was another group of riders. Jack was still with me, but we ended up riding with 6 or so other riders the rest of the way. Good thing because I might have gotten lost in Newburyport. I didn't see any markings so I just followed the others.

When I saw the school sign, I knew we were close. When I saw the turn into the school I let out a loud scream. Jack felt the same way as he screamed along with me. Turning into the school I could see my Dad, Lori, Trevor and Mike DaRosa standing cheering along with some others. Cooper and Gracie had gotten bored and went to get food.It was a great feeling to finish. Almost 160 miles over 2 days. I never thought I would ever be riding that much.

I want to thank everyone involved with the ride. The C.F. Foundation, all the volunteers and all the riders. Especially Team Dunkin'. John Carroll does a great job getting people to join, and it was a pleasure to meet all his family and friends that he recruited to ride. Thanks to all the Dunkin' franchisees who took the time from their very busy lives to ride. We are all busy and for these people to take the time to train and ride was incredible. I am touched. The Dunkin' Donuts family is just that-they have been involved with Cystic Fibrosis for years, and it's because of Trevor. They donate food for all kinds of Cystic Fibrosis events throughout the year. They sell sneakers to raise money and they donate money also. Thanks to my family for being so supportive of me doing the ride. You were all great and I could not have done it without you.

We are a very lucky family. Trevor is a lucky kid, he doesn't even know it. All of you that take the time to raise money, work events, come to events, tell us when you are feeling sick, stay away when you are sick, it goes on and on. Life is short and we are all busy. Thank you to everyone who has ever taken a second to help us out in one way or another. We cannot do this alone, nor would we want to.

Trevor was my inspiration for doing the ride. I have a picture of him doing his vest, and breathing treatment taped to my bike. If I was having a tough go of it, I would look down at it. Here is a picture of my son who has to do this stuff every day. Every day. We don't let him skip treatments. He puts up a fuss once and a while, but he does them. If he can do those things every day, I can ride as far as I need to. We will find a cure, a treatment, something to ensure he lives a long and healthy life. We will. All of you will have played a part in that. And I will say it again, once that day comes, the day when we find something that will enable us to say that C.F. stands for Cure Found- we are throwing one hell of a party.

Thank you from the bottom of my heart and from the bottom of Trevor's lungs. You are all amazing.

The Ride Part 2

2010-07-20T15:40:00.003-04:00

I believe my training went well, considering I have been riding by myself for the last 8 weeks. We have a friend- Olivia-who is training to do a triathlon in Lake Placid this upcoming weekend and she has been my go to person for almost all my biking questions. She works at the Trek store in Portsmouth and I would go in to see her and get some items I needed. I would ask about 25 different biking questions each time I was in there and she was very kind to answer each one, no matter how stupid. Thank you Olivia!

Friday night was spent making sure I had everything I might need for the weekend ride. We would be staying at the University on New England in Biddeford, in dorm rooms with no air conditioning. Not exactly great considering how hot and muggy it has been this summer. I was going to be rooming with my brother Isaac and his friend Max-that was going to be the second surprise for Isaac- I made sure to bring a fan- ended up that the fan didn't really make much of a difference, it was hot and I woke up covered in sweat.

Getting up on Saturday morning at 5am was nice, it was actually a little cool outside. After packing my bike and bag in the car and making sure I hadn't forgotten anything I headed out on my way to Newbury. Once there I was a little nervous. There were going to be 125 riders and I haven't even been on ride with 1 other person, never mind all these other people that were going to be on the road at the same time with me. I checked in and waited for Isaac. He came in about 20 minutes after I had arrived and I pretty much jumped out in front of his car when I saw him. He was surprised and happy to see me, or at least I think he was.

Since Christie had all the kids, it was just too early to pull them from bed to come and see me off, but Mom C-Christie's Mom,and Stan showed up. My Dad and Lori also showed up. It was nice to have people there to see you off. I was lucky enough to have both sides of the family show up. It's a good feeling to have that support there for you.

They sent off the elite group of riders at 7am or so. Then they sent off the rest of us roughly 5 minutes later. We probably took off 10 minutes later, we were taking a Team Dunkin photo.

I was riding with 2 other Team Dunkin' people. One, Jason, was a franchisee-second generation like myself, family having been in the business for many years. The other was a friend of John Carroll- a Dunkin Brands employee who organizes all the Dunkin riders for the event.

It was a little weird at first riding down roads that I have never been down before and not knowing where I was. The first rest stop was at Hampton Beach and my Dad and Lori were there to greet us-luckily because we were going right by it until Lori started yelling at us to stop. We didn't see it. Then Portsmouth, in downtown. Next stop was in York and same thing my Dad and Lori were there as well. It was nice to see them.

This is the point where people who don't do the entire ride jump in. We picked up a Dunkin person here, Carl Andrade from Manchester. After that it started getting really hot outside. It was important to keep hydrated and eat what you could at the rest stops. I am not sure where the last rest stop was, but it was 8 miles from the end of day one. Those last 8 miles were tough. I think it was the fact that we knew it was only 8 miles, and it was flat for the most part, but it had stretches of long inclines which made it hard. Then right before the end was a steep hill where there was construction going on. UGH! I hate hills,and that really stunk. But we made it and it felt soooo nice to take a shower and change clothing. Eighty two plus miles on day one and it felt great to have completed that part of the ride. Although it was still very hot out, I believe it was over 90 and still humid in Biddeford. So we were outside since our rooms didn't have air conditioning, at least there was a breeze every so often.

That night there was a dinner for all of us and Team Dunkin' won the award for the most money raised by a team- I believe we raised over $13,000. I say we, but I know I didn't raise that much, the others on the team did a great job. The event itself so far had raised over $113,000. Great job!

That was the end of day one. Now it was time to try and get some sleep and prepare for day 2.

The Ride-- by Durval

2010-07-19T07:52:00.006-04:00

For the past few years the Northern New England Cystic Fibrosis Foundation has held a bike ride that travels from Newbury Mass. to Biddeford Maine. Christie has been manning a rest stop in Kittery on the second day of the ride when the riders are heading back to Newbury for the past six years. It's called the Seacoast Safari.

This year my brother Isaac started training and was going to do the ride along with a friend of his, Max. He had backed out last year, but this year he bought a bike and was training, so he was really going to do it. They were going to ride as part of Team Dunkin' who have had riders the past 3-4 years.

One afternoon in late April, I was at a Dunkins meeting and the ride came up. They were looking for more riders. I believe they had another 4-5 people say they would do the ride. That was when I called Christie and said, I think I need to do the ride this year. How could I not? Here are these guys, mostly older than me, volunteering to do a 150 mile bike ride for Cystic Fibrosis.

So it begins. I have a mountain bike type bicycle that I have had for a couple of years. I started riding that early morning before work a couple of times a week. Nothing long, 8 miles or 10 miles which I thought was a big deal. And it was at the time. But this was in May and I wanted to do the ride, but had not yet committed fully. Then I started bike shopping. Tried a couple of places, and didn't find what I was looking for- I didn't know what I was looking for, but I know they didn't have it.

Then I went to Exeter Cycles and met Brian- gosh, I hope that's his name- he went through everything with me and that was it. I left there with a brand new Cannondale, along with shorts, a shirt, helmet and shoes. Everyone there was great, not just Brian. Very friendly, nice and very knowledgeable- not to mention tolerated all my questions since I had no idea what the hell I was doing. And feeling a little weird in spandex shorts. Yeah, a weird feeling when you first start wearing them.

So now it's mid May and I have a brand new bike, and there is no turning back. If you have a mountain bike and go for a ride or any other type of bike and then jump on a road bike-there is a huge difference! Every little motion you make,your bike makes with you. That was the first thing I noticed. Second was how much of a difference it makes in riding. The bike is so light you can ride further with not as much effort as when riding a mountain bike.

I started training more and more- as much as I could anyway. I was coaching baseball, work starts getting busy in May and life in general is crazy. I would get up early morning before work, usually around 4:30, get ready and hit the road at 4:45 or so. I would start riding and it was still dark out, a little scary, but thankfully I had bought a bright yellow shirt, you couldn't miss me on the road.

My rides started getting longer and longer. From 10 to 15, then started gong 18 etc... I worked my way up to doing around 18-20 at least three times a week and then a long ride on Sundays. The longest I did was 52 miles. That was 2 weeks prior to the race.

And I haven't mentioned that my brother Isaac had no idea I was going to ride. I kept it from him. I kept on giving him a hard time about the race. Saying things like"how hard can it be", " I think I might do it with my mountain bike", and "do you think I need to train if I do the ride"?

It started bugging him I think because he was training and it was not easy, as I did know but wasn't about to tell him.

This all led up to this past weekend. The Seacoast Safari, July 17th and 18th 2010.

Our Own Fourth of July

2010-07-05T09:45:00.005-04:00

Let's start with the face of a grown pyro...does he look happy or what? Am I concerned the children will learn by example that fire=fun? Yup. Gracie was a natural, Trevor definitely a natural, and Cooper? He was serious about it...a good sign of respect for fire. One out of four is not very comforting.

This is the aftermath of their fun...

Let's not forget we started with S'Mores...I think Cooper ate four of them and felt ill later...hee hee.

It was a blast (hah) and the first year in many that we haven't joined in the reindeer games of spectating 'real' fireworks. The only thing we missed? Staying up too late & fighting the crowds, both of which we were thrilled to miss.

A Great Day for A

2010-07-01T15:30:00.003-04:00

guinea pig picnic. Hobbes doesn't see the light of day that often (Molly would love to show him, however). Today he got to come out and was treated to an 11 year old's picnic--carrots & fresh grass.

I Closed My Eyes...

2010-06-30T08:23:00.004-04:00

at the beach yesterday. Sounds not worthy of mention, doesn't it? But, after 11.5 years of parenthood I haven't been able to do this. I soaked in the glorious rays at the beach for all of 45 seconds with my eyes closed. The children were happily playing with peers, digging, filling, emptying, talking. It helped that I only had two with me at the time, but having Gracie as one of the two may be like counting 1.5 kids.

So I did it, I closed my eyes, turned my face to the sun (with sunscreen on, of course!), and felt the warmth and magic of the beach soak into me.

Then I opened them again and counted 'one, two', two little bodies safe on the beach. No disaster, no floating away out to sea.

Maybe this is a sign of things to come, at least at the beach.

Oh be still my maternal heart...

2010-06-24T09:35:00.002-04:00

Our first Fort Foster Day...

2010-06-23T08:07:00.002-04:00

And we even bumped into people the kids knew so it was like a spontaneous playdate--we love summer!

All in a 'Normal' Day...

2010-06-21T12:24:00.001-04:00

This pretty much sums up life here...

Catchin' Up

2010-06-14T13:15:00.003-04:00

What have we been up to? Hmmm, let's see...

Keeping Trevor on schedule despite an insane bball schedule & homework:

Helping Cooper with Bibi's Birthday present (a Porkacheese boat, if you ask the kids)

Keeping Gracie entertained at all the baseball games...

Watching Cooper develop his skills so next year he can play kid-pitch...

Watching Gracie 'graduate' from preschool. Look out kindergarten, here she comes...

Marvelling at Cooper's artwork and written stories from first grade. He rocks.

And cheering for Trevor and Durval as the the "kinder and gentler" team wins first place...

Firsts...

2010-06-10T10:18:00.003-04:00

I always am amused when at 43 (or any advanced age) I do something for the first time. In this particular case I am ashamed that it took me until age 43 to do this.

Last week I went to the movies. I am having an affair with popcorn with butter and the movie is merely my 'room' for my popcorn passion. The movie is of second importance, it is the music in the background of my crunching. Last week I went on a night when there wasn't much out that had been out for a while--I don't like crowds for my popcorn fantasies. That left me with limited options of what to see. Turns out that there are closed captioned movies (duh, right?) that play in theatres and aren't very crowded.

I saw Sex & the City 2 that was closed captioned. It was incredible to be torn between reading the words and watching the movie. I couldn't help but think how crazy it was to be only first trying this in my 40's. Other observations? For general crowd scenes with music and talking the closed caption translators set the scene with only a few words and, as a consequence, a scene really lacks the detail that hearing it delivers. I feel bad for hearing impaired people because the words give you the gist, but don't give you the feel of the scene.

Sex & the City 2 might have been terrible but the experience of closed captioning and my on-going tryst with the popcorn made it quite palatable...try it, it's very interesting.

Pride and Joy

2010-06-07T08:03:00.003-04:00

Just look at this picture...the epitome of pride and joy...beaming!

Sneak Preview

2010-06-06T06:14:00.002-04:00

of Gracie's first-ever ballet recital. Yesterday was the dress rehearsal...she's a head taller than her age-peers...my little bean is going to be tallllll....

A La Peanut Butter & Jelly Sandwich...

2010-06-05T08:26:00.002-04:00

Trevor loves to make me breakfast every once in a while. Usually breakfast in bed, how sweet is that? Today he and Gracie did something different, surprise breakfast for Mom in the....

Garage! Full table setting, centerpiece, bagels, noodles, waffles, eggs, bacon, peanut butter, turkey & cheese. What a fun way to start the day! Here's hoping they'll take over breakfast cooking come summer...

Odyssey of the Mind experience

2010-06-02T07:09:00.003-04:00

When we found out that the Kittery team had won the State of Maine and had a chance to go to Michigan, we were excited for the kids and then the thought of going to Michigan kicked in. I really didn't want to go. It's so far away, going for 5 or 6 days, right before and during Memorial Day Weekend-which is one of the busiest weekends of the year for work.

Not to mention the Cystic Fibrosis angle and the challenges it would present. Then right before we are supposed to be leaving Trevor has another allergic reaction to meds, then gets taken off of ibuprofen and he then proceeds to get a fever, throws up, in general not feeling so hot. There was a chance we would not be able to go-which I was not ok with- If we were going to miss the trip, I didn't want it to be because of illness. That would have crushed Trevor. He recovered in time and the trip went on as planned-as you have read in my last few posts.

This will be my last post on the trip. I needed to finish it off by going over some items that were not mentioned in my previous blogs. First off- the MSU campus in enormous. They have fields and arenas for every event you could ever think of. It wouldn't surprise me if they had a devoted field house just for beer pong. Over 45,000 students attend that school. Crazy. They did a great job hosting the event. The logistics that go along with hosting must be insane,but they pulled it off and did it well.

I roomed with Rob Sawtelle across the hall from Heidi and Kristen. They get praise for not complaining-at least not to us- about being across the hall from 2 people who can be a little loud at times. Heidi even let us borrow a cooler. Thanks Heidi!

Andy did a great job organizing our days and keeping us in check and making sure we got to enjoy seeing other competitors and different events while we were there. It was well worth seeing other groups perform and seeing other parts of the campus.

The kids were all great. Really. They had fun with eachother and with the adults. It was great to see them all interact so nicely together and have fun. Each child there was amazing. A great group of kids.

I knew most of the adults going, some better than others but I didn't know Sue, Rob or Brad at all. It didn't take long to realize that they are pretty much like the other parents I did know and ended up having a great time getting to know them better. Everyone there was great. People were always asking about Trevor and how he was doing. That was really nice. They all knew he had a tough week prior and were always asking about him.

It was great to have kids sit in with Trevor as he did his treatments as well. I didn't have to ask, but on almost every day one child would sit with Trevor while he did his treatments. That made me very happy. I know Trevor was upset that he would be stuck in his room while the others were out doing their thing.They would ask questions as to what he was doing and why. I would try my best to explain to them so they could understand and they all seemed to. It was a good experience for Trevor and the other kids who had never seen him do his therapy or breathing.

To all the parents, coaches and children that went on this trip-THANK YOU! It was a great experience and Trevor and I had more fun than I think we would have ever imagined.You are all amazing people and I am happy to live in a community that has such great people and children.

If you ever have a child that has the chance to go to a world finals event for Odyssey of the Mind- do yourself a favor and go. You will not regret it. The best way to compare it would be something that Mike D. told me while we were there--it's like having children. People can tell you all about it, but until you actually live through it, you just don't get it. That holds true for the experience at the world finals.

Trevor at Chili's at the airport and then sleeping on the plane.

Saturday OM

2010-05-31T20:59:00.005-04:00

Saturday was a day of no rushing to get places-almost- and trying to enjoy the day as best we could. We all went and saw some performances by groups from around the world. It started with a Polish team in the Gift of Flight division. I missed this one, but apparently it was amazing. They got a standing ovation from the crowd. The kids all thought it was great and the judges agreed because they ended up being the World Champions in that division.

We then saw 2 different performances in the columns division. The teams need to build columns made of balsa wood-there is a weight limit, not sure what it is- and they then stack weights on top of it to see how much it will hold. But at the same time there are people performing some sort of short play to entertain people. It was different, but the columns were amazing. The first one we saw was destroyed after 375 pounds of weight, the second one held over 500 pounds!!! It was incredible.

The group then headed over to the swimming pool, but we had a good group of people playing racquetball as well. We came back to the dorms at around 3:30 or so and had some down time for a little while.

Trevor and I played cards and he went with Jake somewhere to try some pin trading. He did his afternoon meds while playing cards with Gunnar. We had dinner and then headed over to do some pin trading before the awards ceremony.

The awards ceremony was a little long, but they went through all the winners of all the divisions and the kids enjoyed it. Our kids all got blinkies, to wear during the ceremony. Well, Charlie got 2 magnets stuck in his nose-way up there. Amy ended up having to take him to the emergency room to have them removed.

Once the ceremony was over- around 9:30 or so. We walked the kids over to a party. The older kids had their own party somewhere else, but the Division 1 team had a party across the street from the arena. I dropped Trevor off to “party” with hundreds of other kids at 10pm!!! It goes against everything we have ever done with Trevor. The good thing was that he knew he was tired and ended up coming home before it ended. He ended up in bed around midnight. Good thing because I had to wake him up at 5am so we could catch our flight home.

The other children came in around 12:30, or a little later. I was in my room speaking with Rob and Brooks when we noticed it was already past 1am, almost 1:30. Crazy. Rob and I ended up staying up until after 2am. We couldn’t seem to fall asleep. I think the fact that it doesn’t get dark until almost 10 pm has something to do with it.

Memorial Day Parade 2010

2010-05-30T07:13:00.003-04:00

Cooper walked with the Little Leaguers in the Kittery Memorial Day Parade this year. It's always a small event that lasts about as long as a song or two. We had plenty of good company this year to take it all in. Shelley and baby Timmy came along to watch for Cooper with us. Cooper was either tired or took the 'serious-nature' of the parade pep-talk very seriously. We couldn't get him to wave at us or smile. He did, however, smile willingly for his little friend, baby Timmy. He even let Timmy pull his hair. In Cooper's world, that is true love.

OM at MSU, Day Three

2010-05-29T17:35:00.003-04:00

Friday was the day of their Gift of Flight competition. But unlike their spontaneous event, they had to wait until 4:18 to perform. It is safe to say the kids were a little hyper leading up to the event.

Trevor and his team finished working on their props in the morning. They also went over their speaking parts while making some paper airplanes. After they had done that, they took their props over to the competition area and came back for lunch.

After lunch we headed over to see the division 2 kids compete in their Gift of Flight event. They didn’t get to complete all of their tasks but they never gave up and it was great to see how they kept working and never gave up even though they were having a tough time. Congrats to the Shapleigh Middle School Division 2 team. Nice job boys!

We tried to take a bus back to our dorm, but that didn’t work out so well. We ended up walking back and it was a good hike, not to mention it was hot outside. The kids only complained a little- thankfully. We tried to stop and get ice cream, but the line was too long. Rob and Mike wanted to head over with the team by 3pm and it was already 2:30, so we had to keep moving.

The parents walked over together to watch the performance. I had never seen it, but it was based on the movie Up. They were all in costume, they looked great. The performance went well. They accomplished all their tasks. It started out tough as they missed the first 7 or so attempts on the first flight. At this time Jake thought he had made the distance so he asked the judge why he rang the bell- that’s how the kids know they didn’t accomplish their goal, one to the judges rings a bell- he told him that it went too far to the right. The very next paper airplane Jake fires off goes directly into the chest/face of the judge that had just rang the bell. The whole room erupted in laughter. It could not have been planned better.

They had a couple of other issues, but they never gave up and accomplished all their tasks. It was great to see. I am very proud of the kids. I was nervous watching, and they too never gave up and did a great job!! Congrats to the Shapleigh Middle School division 1 team- Jake, Trevor, Auden, Celia, Hunter, Charlie, and Andrew!

We came back had dinner, most kids went and did some pin trading, Trevor and Isiah stayed behind and hung out. Trevor did his treatments so it worked out well. Then they all ran around the hallway, listened to music, watched parts of a movie, and behaved like happy children until too late into the night.

The parents hung out, we celebrated Amy Driscoll’s 41st Birthday with some cake and adult beverages in one of the rooms.

Saturday is the closing ceremonies, and there is kids party and a coaches party. I’ll let you know how that goes.

Gracie Vs. The Sprinkler

2010-05-28T12:59:00.002-04:00

Gracie's first foray into the sprinkler, complete with smeared sunscreen and stuck on mulch...pre-summer at its finest...

And then, when the mood struck, with no opposition from her brothers she decides to go Kung Fu on the sprinkler...

OM at MSU, Day Two

2010-05-28T06:38:00.003-04:00

From Durval, parent & reporter on scene...

Today Trevor actually slept until almost 7 am! That's amazing if you know Trevor. We hit breakfast with most of the other OM kids. Then the kids and coaches went off to drop off their props for their GIft of Flight competition. After that was lunch- Trevor tried roast beef for the first time ever, and he loved it! I had some as well, it was good.

After lunch it was time for both teams to head over and do the spontaneous part of the competition. When they do this part of the competition, there are no coaches allowed in with them. They go into a room with judges and are asked to complete a problem of some sort within a certain amount of time.

Both groups think they did well- not great, but well. There was some pin trading and then we walked over to see the Creativity Fair. That lasted for an hour or so, and it was almost 5 and time to head back and grab some dinner.

After dinner a bunch of the kids went over to go swimming- it was hot today as well in East Lansing- but Trevor was not one that went swimming. He headed over with Rob and they were going to throw the football around. I was finishing up eating and let him head over.

After lunch I headed over to the pool area, which is like a huge gym. There's an outdoor pool, indoor pool. weight room, you name it, they have it. Trevor was playing racquet ball with Rob and Isiah. I jumped in and played for a while as well. It was a lot of fun. Trevor really enjoyed it. Great cardio workout. Although with 4 people in the court it gets a little scary. Trevor was hit in the ear, and then I proceeded to hit Isiah in the ear about a minute later. They are both ok.

We came back to the dorm and it was 7 or so. Trevor did his breathing and vest and then everyone went outside for a softball game. That was a lot of fun as well. A few people were playing cards instead of softball, but we were mostly all together.

That was our day. Trevor had a lot of fun and so did I. It's fun because of all the great people that are here. All the kids are great. I enjoy speaking to all of them, playing with them or just listening to them. The adults are also a good bunch of people. I knew most, not all, but have gotten to know the others and I can say that they are a lot of fun to be around.

Tomorrow-Friday is the competition. The kids are excited, as I am. I haven't seen them perform and I can't wait.

Pix from Michigan and Trev's OM Adventure

2010-05-27T07:11:00.002-04:00

From Durval, reporter on scene...first view is in the stadium with all the teams/families (holy moly!)

Trevor's teammates is the next one.

Third shot is Trevor doing his treatments in a dorm room--7 years ahead of schedule!

Durval From Michigan Day One

2010-05-27T07:04:00.000-04:00

Trevor woke up before 4am today. He was putting on shorts when I went into his room. Wow. We drove to Manchester airport and were there at 5 am for our 6am flight. You would think that would be enough time- barely. There were some issues with computers etc... sat in line for 40 minutes!! Didn't get any coffee nothing to drink, we had to rush into the plane. Oh well. Flew into Detroit and took a smaller plane to Lansing airport. The flight was a total of 25 minutes.

We made it and had some Burger King for breakfast at 10 in Lansing I believe. We found Trevor's OM team finishing up unloading the bus when we pulled in. It took us a while to find them, but we eventually did. He was very excited to get here.

We then had some casual time, and ended up in a dining hall for dinner around 6pm. He did his vest and nebulizer at the same time. We then headed over for the opening ceremony. Place was full of kids from all over the world- Korea, Russia, Germany, and Poland-who, when announced came in to the arena walking backwards!! It was so funny.

When it ended we left and it was 9pm. We walked outside and it was bright and sunny!! At 9pm!! The moon was out and seemed to be full, but it was so bright out. Crazy.

Trevor traded some pins today with other kids from other states and other countries. He is having fun. It's nice to see him smiling, laughing and having lots of fun. Not that we don't see that at home, it just doesn't last this long.

Can't wait to see what tomorrow brings.

We're Back...

2010-05-24T08:01:00.003-04:00

Phew, what a week it has been.

Great Strides was amazing with such an outpouring of love & fundraising and the timing couldn't have been better...Trevor got sick right afterwards.

Erythema nodosum, ibuprofen tapering withdrawal, and then a virus (still not entirely convinced of this, but who knows, it's the pedi catch-all for all things unexplained). Four missed days of school, four days mostly in bed feeling lousy. Very, very stressful for Mom & Dad because nobody really knew what was causing it.

The good news is that as of yesterday, he seemed more like himself and just in time for the big Odyssey of the Mind trip to Michigan and the OM World Finals...

Here's hoping Dad can convince Trevor to keep his hands out of his mouth while there since they'll be staying in dorms and eating in dining halls...something I was hoping to avoid until he is 18. It will be fun for Durval, too, because he's never slept in a dorm or eaten in a dining hall...

Bring on an uneventful summer!

Great Strides 2010

2010-05-17T06:33:00.004-04:00

Oh my, how we salute you! A few shots from the day...my video camera jammed so we're hoping walkers got some great pix and will share them with us? We love you all and thank you SO much!

Breathe

2010-05-15T06:26:00.004-04:00

We take approximately 17,000 breaths each day. They say that breathing with lung disease is akin to breathing through a straw. How well would you breathe through a straw?

CURE CF!

2010-05-14T08:43:00.001-04:00

In the PICU at Mass General...hoping we don't ever need to do this again, it was scary.

2002 CF Walk

2010-05-13T06:22:00.003-04:00

Were you there? Do you remember the morning? 36 degrees out, raining, and turning to falling slush? Ugh. It was horrible. But it didn't stop you, did it? You still came. You might have just turned in your money, had a coffee, and left with a hug...but you still came.

Imagine how nice it will be with the sun shining this year and glinting off the ocean? 66 and mostly sunny at last check...just saying, you know?

CF Old School Style

2010-05-12T06:07:00.004-04:00

Here is Trevster in his chest percussion vest (the old one). Notice how big the compressor part of it is? Before getting this machine (which costs $16,000 by the way), we'd have to tip him, head down, and bang on his chest with little plastic percussion cups. We watched tons of 'Bear in the Big Blue House' during this era and when I hear the music from that show it transports me back to PT sessions in house #1. Thank goodness for technology.

Great Strides Walk to Cure CF, Sunday, York Beach, ME or sponsor us at this place:
CLICK ME

Happy Anniversary Durval!

2010-05-11T07:35:00.003-04:00

Hmmm, let's see, what have 13 years brought us?

Two houses
Three kids
The loss of one mother
The loss of four grandparents
One CF diagnosis
One appendectomy
Two herniated discs
One trip to Europe
Three dogs
One guinea pig
One dislocated toe
One surgically closed leg wound
One CF hospitalization
54 days at Tia Maria's
Many CF events
One million dollars raised
More laughter than tears
More good days than bad
A true partnership of parenting

Happy #13 Durval--you are one in a million, my dear.

It's Almost Time...

2010-05-10T08:14:00.001-04:00

Happy Mother's Day Mom!

2010-05-09T07:03:00.000-04:00

That We Could All Be So Lucky

2010-05-08T12:49:00.000-04:00

"I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."
-Dawna Markova

Happy Birthday Grace!

2010-05-04T06:25:00.004-04:00

When I met Durval in 1993 it was summer and his family took off to their lake house, leaving him to hold the fort in Exeter. I, therefore, met them for the first time in Barrington, which was a good way to meet a Portuguese family, in a very casual setting.

I had worked for his Dad when I was 16, my very first real job. His parents struck me as nice parents, rather quiet, and probably scrutinizing me quite thoroughly.

Speed forward through the summer and our courtship got a wallop, my Grandmother died in August of that summer, followed immediately by his Grandfather. The seas started to get choppy.

Winter passes and on Durval's birthday in 1994 his Mom found out that her cancer (which they thought they'd beaten) had returned. Stormy seas.

As fate would have it she was treated at Lahey Clinic in Burlington, MA. I happened to work right down the road in Bedford. It became my routine to drive down to see Grace and Tony in the hospital during my lunch hours. I tried to be the comic relief--or at best, a mere distraction for 40 minutes--from life in the hospital. It certainly wasn't the ideal way to get to know people, but it also was a great way to get to see their true colors. It was oftentimes not pleasant to visit as Grace would endure tests, and jabs, and Tony would be up or down, depending on the situation of the day. All I could do was to try to visit.

Grace lost her battle in October of 1994. It was devastating to everybody--most especially her family--Durval was only 24, Shawn, 14, Krystal 11, and Isaac only 8. True tragedy.

Today is her birthday and we celebrate it with all we have--for, without her, there would be no amazing Salema kids. To the woman who tried to kick cancer, fought it valiantly, and accepted transcending to a better place with openness. Happy Birthday Grace!

Pitcher!

2010-05-02T06:52:00.002-04:00

He pitched to 17 out of 18 batters.

He struck out 14.

Proud parents? Yup.

Take that CF!

Happy Birthday Big Jim!

2010-05-02T06:35:00.003-04:00

To the best Dad out there...thank you for teaching me about good music (50's mostly and even disco), instilling in me a love of movies (does anybody else go to movie double headers on Xmas day? We did, it was awesome!), pulling me up hills when we'd go jogging, teaching me how to throw a baseball like a boy, exposing me to fine restaurants at a young age--Emily Post would be proud, taking us on grand trips when we were young (skiing out west, FL, shooting guns in VA, the Big Sur, Stowe, Idaho), bringing me to business lunches in NYC while I was in college (I got good food and learned about business at the same time), the list goes on. But mostly, thank you for showing me that your happiness is contagious and that dancing around the living room singing songs while whistling and clapping is one of the most wonderful things a parent can do--shared joy is contagious!

Cooper too!

2010-05-01T09:10:00.003-04:00

Opening day!

2010-05-01T09:10:00.001-04:00

Happy Bday to Us

2010-04-26T06:21:00.003-04:00

Since Jamie's birthday is in two days I figured I'd do a self shout-out and a shout out to my little brother.

1973. Sweet, huh?

A toast to Mom & Dad for surviving us. I think about how awful I was to Jamie (painted him yellow with oil based paints, pushed him down a hill in a little wagon--he was 2 or 3?--and on and on...) and it makes my daily experience here with my small people seem more tame...

Love you Mom & Dad!

A perfect day to build a castle

2010-04-22T11:32:00.001-04:00

Marathon Day 2010

2010-04-19T15:13:00.002-04:00

Trevor waited...

and waited...and Tim made it!

Tired little epic man.

2010-04-19T14:45:00.000-04:00

Epic Fun

2010-04-19T06:20:00.002-04:00

The Epic Man Journey on WMUR--Team Trevor (and Trevor himself!!! and Uncle Isaac & Max) made it into the news story. Bravo Epic Men & thank you for spotlighting some great charities! Trevor and I will be at Mile 20 at the marathon and we'll hope we see you go by!!!

WMUR News Piece on the Epic Man Journey

Will the celts win?

2010-04-17T19:51:00.001-04:00

Snow

2010-04-14T11:06:00.001-04:00

Snow

by Cooper S.

The snow is like water.

Snow falls from...clouds.

Snow

like white spraypaint.

Snow

helps you move on skis

and a snowboard.

Blossom poet, blossom.

Time Management Skills

2010-04-13T08:11:00.005-04:00

Life with CF is a constant exercise in time management skills...Here is Trevor trying to do homework while doing his chest PT while doing his nebulizer treatment...

We've been doing the neb/PT combo for a couple of weeks now and Trevor doesn't think it works as good as doing them individually so we will be resuming evening treatments one at a time (which extends the rigmarole from 24 minutes to 45 minutes). It's no wonder he is perpetually tired.

Dear CF drug companies, please reformulate ALL the meds to work in an EFlow and then Dear EFlow company, please make the EFlow easier to clean, ok? Just asking is all...

Brmmm, brmmm

2010-04-12T08:47:00.002-04:00

I saw one Lotus and one Ferrari on Saturday while en route from grocery shopping. Who drives these cars? What happens when you get a rock kicked up and it dings your car? Do you merely scoff at it or do you get it fixed? Do you get good gas mileage (me thinks not)? Can you fit your groceries in it? And, most importantly, do you ever get a chance to drive it like it was intended--fast, fast, fast?

I know my minivan is far from sexy but I can fit a lot of groceries in it, I scoff when the kids ding it with their toys, I get moderately ok gas mileage (it should be much better, where is the hybrid minivan--somebody is missing a HUGE market), and I know I'm driving it like it was intended...

Bah humbug to you, you fast car insanely rich people! Try a minivan on for size and see how well it fits you! hah!

Potown at its best

2010-04-11T13:17:00.001-04:00

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Zombies in the House!

2010-04-07T08:11:00.003-04:00

"Hey Cleopatra, nice to see you!"

This was how I greeted a fellow Zombie last night at our first 'refresher' for the Spotlight Music Awards show.

She then introduced herself as Becky--she was in front of me during the 2009 Portsmouth Halloween Parade as the Zombies stormed the town. How funny not to know somebody except as the temporary character they became for one evening in the Fall. Even more odd it to see them again in April--a half a year away from Halloween and totally out of context!

Those undead of us who are able to will be doing the Thriller dance again at the Music Hall as part of the Spotlight Awards show finale. This dance event is filled with the need to actually get the steps right--we'll be on stage! Mon Dieu! To err is human, but is it also undead?

Hoping to stay on the stage and not fall off, nor to push any other Zombies off the stage as we learn how to walk without moving.

As we Zombies like to say, "Grrrrrr...see you next week."