Lilienna!!!

The last few moons...

2009-08-16T20:30:00.000-04:00

The coolest kid's ride we've found yet - Dizzy Dragons at DelGrosso's - daddy could ride along too and spin spin spin. Lili's not a huge fan of going on rides alone, so rides like this are the bestest. And I get to ride in a dragon too.

Sara and Lili before a beautiful wedding near Roanoke, VA...

...and the playground half way back from Roanoke, VA that made the drive back managable.

Look! Miffy and Bunny!

More good times with Pappy at Knoebels...

and Grammy too...

Check out my new glasses!

Finally, traversing the maze of cheese at Knoebel's...more to come, I promise!

Preschool fame

2009-04-09T00:12:00.003-04:00

They handed out a brochure at Lili's preschool with her cute little smiling face on it, along with some of her little friends - I don't see the brochure on their website yet, but there she is on the page for the preschool! Clickety click, scroll halfway down, and check it out...

Please touch

2009-04-06T22:58:00.007-04:00

Funny, the day before we went to the Please Touch Museum in Philly, we were checking out Lili's favorite toy store and saw a new sign on the huge ferris wheel that kids are always tugging at and pawing - "PLEASE DO NOT TOUCH". I can't blame the store owners, that poor piece of toy store window candy had been through years of abuse...
So it was a nice segue - see that sign, Lili? Tommorow we're going to the Please DO Touch Museum! It's a germ factory!

First, a nap...mmm...hotel pillows...

Then shopping...

Such a cool Merry-Go-Round/Carousel/Horsy thingy:

Then to a tea party with Cheshire Cat:

The hall of mirrors in Wonderland:

And the highlight of the whole place...
The dryers next to the water splashing goodness!!!

Six week delay

2009-03-15T10:34:00.003-04:00

Yeah, we took this walk on February 1. But it's new to you, right?

...I want to jump in that puddle so bad!!!

Lili gets down in her fancy Minnie Mouse outfit. Like the new 'do?

Genetic Counseling research study

2009-02-10T20:28:00.003-05:00

Anyone interested in the below study, please feel free to check it out - thanks!

Genetic Counseling Web-based Survey Research Study

Parents of children with Down syndrome and adult siblings of persons with Down syndrome are invited to be in a web-based, survey research study. The purpose of this Penn State study is to learn more about needs and expectations for genetic counseling. No prior experience with genetic counseling is necessary. The survey takes about 30 min to complete. If you are interested in being in the study, please, go to https://online.survey.psu.edu/downsyndrome/

General results will be shared with the Centre County Down Syndrome Society at the completion of the study. For more information contact Kathy Peters, MS at 814-865-1392 or kfp1@psu.edu.

Brighten up your day

2009-01-31T23:26:00.002-05:00

Cheeeeese!

Christmas Bliss

2008-12-27T15:49:00.007-05:00

First thing Christmas morning, taking in all of Santa's bounty. The stockings were hung by the corn stove with care.

Getting right to work trying out her new toys. Spiders + marbles + water spouts = good times... Note mommy in the foreground assembling many, many flowers. Yes, you read that right.

Playmobil, sweet Playmobil - Lili shook the first box she saw on Christmas morning and yelled, "Playmobil!!!" Here she checks out her new ice cream store, complete with about 4 trillion parts, including many, many unassembled flowers. Some assembly required.

Boxing Day at Grammy and Pappy's; showing off her new piano and tearing into round 3 or 4 of presents

Preparing for Christmas; baking cookies with mommy. The shutter kinda sorta opened for this one; I couldn't resist the intent stirring.

Roll it, pat it...

Mark it with a sprinkle.

Still here

2008-11-11T23:43:00.000-05:00

Pardon the really long delay - we're back; here's a few photos to remind everyone what we look like...

Lili was a worm for Halloween; she insisted on it. She could be convinced to be an inchworm, even though she really wanted to be a slimy worm (eeeewwww, yuk)

Lili and cousin Henry had a great time trick-or-treating together.

Lili's doing awesome; she's loving school, and her dance class on Saturdays, and playing in the leaves, and playing with her friends...

Preschool!!!

2008-09-12T21:52:00.006-04:00

Lili ready for her first day at Fairbrook

So...preschool. I have to admit Daddy-o was a little nervous, since last year's, um, pre-preschool experience was a little...let's just say it was a warm-up. But is Lili ready for school now or what! She goes to a preschool down the road for two days a week, from 9 to 11:30, and she LOVES IT! Her Grammie is her aide, and she can't wait to hop in Grammie's car and climb in Grammie's big car seat and go to school. It's tough on Thursday to tell her that she can go back to school in five days... She's been warming up more and more each day, and yesterday she was playing with the other kids, standing in line all proud, and having a great time. We are so proud of her!

Rock Star!!!

2008-08-21T23:44:00.002-04:00

Turtle Magazine feels the wrath of the rock star!

DelGrosso's

2008-08-09T02:04:00.000-04:00

We were talking about a trip to Knoebels last weekend, but the voice of reason thought of a closer, quieter park to try out before going all out on the two hour drive and commotion...and boy, what a great time Lili had at DelGrosso's. The train was a huge hit, and she even enjoyed a turn on the carousel with its fun, but loud music. We are so bringing swim suits next time - they have an awesome little waterpark that brings back memories of Attitash, Weirs Beach, or...cue heavenly choir...The Whale's Tale in New Hampshire for Daddy...

Lili telling us all about the carousel on the train

Did you really think the train was going to go fast? Come on, Daddy...

Side note - check out the Whale's Tale website and the video of the Plunge speed slides...Back in my day, you rode on those with a mat, face first on your belly. I might've had a little to do with their current rule of lying on your back with your arms crossed (not so comfy, btw) - I would launch myself off the first hump and land back on the slide about halfway down the bottom part. Probably not the best idea...do as I say, not as I did, Lili :)

Fun at the game...over a month ago...

2008-08-02T14:43:00.004-04:00

We went to a State College Spikes (minor league baseball) game that the CCDSS held as a fundraiser - um, over a month ago (hehehe - yes, I am always slacking on the blog...). Lili had a good time, despite the rain - hey, makes for good rainbows, even double rainbows. More pics and random stories coming soon, restless fans, I promise ;)

On being 3

2008-07-07T20:10:00.003-04:00

Lili is embracing her threeness. She is such a big girl now, but I still catch myself with a bit of the babyish voice on when I talk to her.

She's making huge strides on the potty (!) Daddy wasn't quite prepared for that whole thing but Lili is blowing me away. She is so ready - most of the accidents she has are on purpose to watch the little pee-fall, and splash in the pee-puddle. We're hoping training pants put out that fire. We were driving back from our weekend cabin retreat, and stopped at a store in downtown Frederick, Maryland so Sara could run in and buy some organic hair mud (yeah, it works). Lili was drawing on her magnety drawing board thing, looked up and said, 'Potty! Yeah!' So I started getting out to grab her, realized I was parked illegally (why we were still in the car in the first place), and pulled out to try to park legally and run in somewhere to find a bathroom. We made it around the block, and out came mommy; so we headed down the street, still searching... After a good ten or fifteen minutes had passed since her potty proclamation, we came across a BK, and the ladies ran in, and lo and behold, dry pants and potty success. Oh yeah.

She also had a little conversation with a nice woman in one of the visitors centers we were checking out - Something like, 'Hi!!!' - "Hi!" - 'What'ya doin'?' - "What are you doing?" etc. Very cute.

Watching her play with her cousin Henry is awesome. They have so much fun together. Their favorite this weekend was for Henry to pretend to push Lili over and she would emphatically fall down. She's been cracking herself up falling over in dramatic fashion recently, so having a costar made her day.

Oh, and we forgot the camera on our little trip. Sorry...

Party!

2008-06-19T20:13:00.001-04:00

Lili had a few friends over a while back to celebrate her big 3.0. We had the party a bit early, partly so cousin Henry could be there. We just planned it so Henry's mommy would be there taking pictures - hehehe...
Enjoy-

P.S. Lili's doing great; her former g-tube site is now stitch-free and healing nicely...

Father's Day

2008-06-16T00:26:00.004-04:00

I wish I could retrieve an image from my brain, download it onto a card and print it out like some of the images I get to share with you all. Try to picture in your mind's eye, then:
Daddy standing at the sink, doing what we 21st century daddies do sometimes. Then out of the bottom right corner of my eye, something waving around; I turn to see Lili with a big open mouthed grin, standing arms outstretched with a card, saying, "Surprise!" Needless to say, made my day.

And now the month in review from our rarely downloaded camera:

Puddles! Scroll down for some puddle splashin' action...

At least they have toys in this stupid hospital.

Away with the camera! I'm baking!

Fun in the rain,

And, as promised...

Happy Father's Day, fellow dads!

Another !@#$%^&* surgery?!?

2008-06-09T23:22:00.002-04:00

Lili goes in tomorrow am for surgery to close her stoma (the site of her g-tube). She yanked the Mic-key button out on Thursday, and after conferring with the doctor we decided to leave it out and let the stoma close on its own. Not gonna happen. She saw the surgeon who put the tube in today and he doesn't think it will ever close properly. Since the stomach acid is frying her poor skin, she's going in for surgery tomorrow - I'm amazed he could schedule it so quickly. She should be there overnight but hopefully everyone will be home on Wednesday. That tube has been a lifesaver, but we barely use it anymore, so...buh-bye.

Buddy Walk!!!

2008-06-03T23:03:00.001-04:00

BUDDY WALK 2008

Our first try turned out pretty well, methinks...

Before

After

Playing all cute for Sue Paterno

Lili and her medal

Sue (JoePa's wife) kicks off the walk

Lili and mommy cheer for the band

Cheers from the crowd and the Little Lion

Group shot of everyone who was nearby that moment...

During:

Lili rollin' with Grammy and Pappy

Daddy sportin' some extra water for the thirsty ones out there

The forecast was a bit scary, but the weather held out nicely

The volunteers were awesome and everything went as smoothly as we could have imagined, thanks to all the sponsors, walkers, donors, volunteers, guests, bands, etc. etc. and Mike J, who headed up the Buddy Walk committee. Looking forward to next year!

me me meme

2008-05-22T13:33:00.000-04:00

I think this is my first time being tagged with a meme - tekeal at Livia the Great got me, I'm it - ooh blogging fun!

What I was doing 10 years ago:

Just beginning my land surveying career in Seattle, making 8 bucks an hour to walk around the woods and people's backyards looking for property corners and such.

5 things on my "to-do" list today: (actually yesterday, I had to go to bed before I finished)

1. Take out the BULK trash - we love bulk trash day here. Buh-bye, nineteen-seventy-something stove!
2. Meet with PA State Senator Jake Corman and let him know the concerns of the Centre County Down Syndrome Society.
3. Meet with the Mid-State Chapter of the Pennsylvania Society of Land Surveyors, and take notes - I somehow got myself into being the new secretary. Time to bone up on Robert's Rules of Order...
4. Stop by work and check on a few things - wait, I took the week off, what the heck am I thinking?!?
5. Enjoy Lili being pretty much back to her normal self two days after having her tonsils & adenoids out - woo hoo!

Bad habits:

Staying up way too late lurking on blogs - procrastinating - not doing something because I don't think it will come out perfectly - procrastinating - did i mention putting stuff off? - being defensive - per. fec. tion. ism. wait a sec, tekeal, did you write my bad habits instead of yours?

5 places I've lived:

Ambler, PA - grew up
Lewisburg, PA - went to college for a while
Seattle, WA - found myself, fell in love
Philadelphia, PA - got my responsibility on
Pine Grove Mills, PA - here I am!

5 jobs that I've had:

That guy that you buy popcorn from at the movie theater - "Theater Attendant"
That guy that stuffs your butt into the ski lift chair - "Lift Operator"
That guy standing out in the middle of the street with the funny looking pole - "Survey Technician"
That guy standing by the side of the road looking through a funny looking 'camera' (no, it's not a camera, and no, I can't take your picture) - "Associate Surveyor"
That guy pestering anyone he can to make sure his daughter has every opportunity to succeed in life - "Dad"

4 people I want to know more about:

Tara Marie at Emma Sage
Emily at Hamula Family
Emily Elizabeth at Lovely and Amazing
Amy at Life According to Emma & Joe

T&A - no, not that kind!

2008-05-16T23:50:00.008-04:00

Well, Lili goes in for her 'minor' surgery on Monday. She'll have her tonsils and adenoids removed and her ears cleaned out for good measure. Heck, he's an ear, nose and throat doctor; why not put in a nose ring while he's at it?
So here's a parting shot of a tonsil or two, along with a good shot of the cheesiest of cheesy smiles.

She's been incredibly healthy for the last year or so (knock on wood) so I'm kinda sad to see them go, on that front. That sadness is fully tempered by the thought of her trying to catch her breath at night. We have heard her stop breathing in her sleep for a few seconds, then catch herself. No fun. So hopefully, bye bye sleep apnea along with the lumps of tissue. Hello, popsicles and sorbet!
Keep Lili in your thoughts and prayers if you would...

Happy Mother's Day!!!

2008-05-11T00:01:00.000-04:00

Our group has spoken with almost all of our local legislators, but it's even better to have a true advocate on the inside...

Happy Mother's Day to Lili's mom, Lili's Grandma, Lili's Grammie, Lili's Great-Grandma, Lili's Aunts and Great-Aunts, Mrs. McMorris Rodgers, and all you moms out there!

Football and cheesecake

2008-05-08T12:40:00.003-04:00

Our little football star...

...practicing hiking the ball

and our little climber...

...letting her toy piece of cheesecake have all the fun.

Crackin' up

2008-04-27T23:03:00.002-04:00

Had to grab the camera to capture this laugh fest...

Flame the Band

2008-04-18T00:35:00.002-04:00

Flame is a rock band from upstate New York whose members have developmental/physical disabilities, including autism, Down syndrome, and blindness. They rock.
They'll be performing in Lock Haven, PA, April 30 and May 1.

Oldie but goodie

2008-04-13T23:37:00.002-04:00

This has been the background image on our computer for a while now - I realized I never posted it! This was taken at the Pittsburgh Zoo in September 2007. I love the determination in her eyes.

Buddy Walk 2008

2008-04-09T00:18:00.002-04:00

Well, the Buddy Walk is coming together - May 31, 2008, 11 am registration, 12 pm walk, fun til 4, at Orchard Park in State College, PA, rain or shine. there's a website up ready to accept registrations, donations, etc...Team Lilienna!!! should be online soon. We've got a nice array of local companies helping out, including Pennoni (shameless plug). This is our first try at a Buddy Walk, since the Centre County Down Syndrome Society is less than a year old. Hope to see lots of people there!