Lilienna!!!

Many, many moons later...

2010-04-22T21:20:00.006-04:00

Yeah, it's been a while, huh? Oops... Well, we're doing great, the tulips are out and the 'beach' is open at Whipple Dam - Lili is queen of the sandpile...

and loves the c-c-c-cold water...

She started horseback riding today and LOVES it:

See you next year! (Just kidding!)

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!

Easter was last week?

2008-03-31T23:40:00.000-04:00

Yeah, I know, it just takes a while to download the camera sometimes...

Decorating...

Hunting...

and cleaning up!

Dancing for the Trees

2008-03-02T22:30:00.001-05:00

Lili woke up one morning in Monterey and wanted to show the trees (and the cute little reflection in the window) some of her dance moves and signs...enjoy!

More California fun

2008-03-01T23:53:00.000-05:00

More fun at the beach! Not quite as warm up in Monterey, but still plenty of sand, glorious sand...

Lili being silly with her great-grandmother Conti. I said, 'smile!' and this is the look I get...

More opportunities for chuckin' rocks! Oh yeah!

And finally, the brilliant San Francisco airport and its Kid's Zone - complete with working water-vapor tornado and...tunnels!!!

San Diego in February

2008-02-24T21:40:00.000-05:00

It was painful to come back from California to 13 degree weather...

Fountain!!!

Beach!!!

Koi!!!

Elmo!!!

Mommy!!!

More, from Monterey, to come soon...

Pre-reading

2008-01-15T23:20:00.000-05:00

Lili just started preschool, so I thought this dark, sleepy early morning video was appropriate.
Throw in a plug for Boynton books, and I can get away with spoiling Blue Hat, Green Hat - every page ends with......Oops!

Halloween in December

2007-12-24T23:42:00.000-05:00

No, I didn't dress her up like this for fun. She asked for each piece of her costume by name, thank you very much. Bug! Dress! Wings! Shoes! Hat! (The hat didn't make it very long)

Merry Christmas, all!

Not going in the Christmas Cards...

2007-12-11T20:31:00.001-05:00

Hello, police? I'd like to report a toddler perched on a table...

Zebras and basketballs

2007-11-10T21:23:00.000-05:00

Our Lil' Ladybug

2007-11-01T21:50:00.000-04:00

Tunnel vision

2007-10-27T22:13:00.000-04:00

Lost in the corn maze, we were. But we kept finding tunnels so it was aaaaall good.

To me, a land surveyor, a 24" CPP (corrugated plastic pipe). To Lili, a TUNNEL!!!

E! A! G! Lili! E! Sssssss..

2007-10-14T14:34:00.000-04:00

Lili and I like to hang out on fall Sundays and watch the Eagles whenever we can. Well, I was wearing my Eagles t-shirt yesterday and she started calling out the big letters - we teach her letter sounds and names, and the letter L is an especially tough one, so I usually say, L, like Lili. So, the Eagles chant is now, and forever will be,
E! A! G! Lili! E! Sssss! Eagles!

Fired up

2007-10-08T21:06:00.000-04:00

We had the second meeting of the Centre County Down Syndrome Society today. I am blown away with the enthusiasm and ideas that are starting to come together from our little group. There are quite a few families in the area; we are just reaching the critical mass that is needed to organize events like a buddy walk or advocacy campaign. It is inspiring to be around such a great group of people, and we're already making a difference.
We were told a story of a recent visit to Pizza Hut. Our friend was gathering the kids in the car when her sister came out with a look on her face...apparently the 'manager' of the restaurant was getting a series of phone calls from the same person during the lunch rush. After telling the caller again that they couldn't call during the busy lunchtime, she hung up and said something like 'what, do they have down syndrome?' Appalled, her sister told the 'manager' how inappropriate her comment was.
After our meeting, our friend made a call to the National Headquarters of Pizza Hut and passed along her experience. The regional manager called her back only hours later and told her to apologize to our entire organization, and that there are employees of that very restaurant with Down Syndrome. Apparently there had been issues with this 'manager' in the past, and this conduct was inexcusable, so she was
FIRED.
How's that for instant karma?

Close call

2007-09-24T23:27:00.001-04:00

I just barged into Lili's room, armed with the dreaded late-night cup (that we so thought we were all done with), marched two-thirds of the way across the room until I could finally see the chair against the wall, and did not see what I expected to see. You see, usually in this situation, Sara would be sitting with Lili as I prepared the demanded cup and brought it upstairs. I would then tiptoe into the room and Lili would decide which one of us was to join her for the midnight snack (lately I've been getting the call more and more, to my whispered 'I win!').
But the chair was empty. So I whirled around, and there was Lili in her crib, sleeping peacefully. Bad dream she had, I guess. I tried so hard not to start cracking up right then, and snuck out as sneakily as I could sneak. I had a glass of water for Sara, too, so I brought it into the bedroom and had a quiet laugh.

On another note, we went for a hike on Saturday to pre-celebrate Sara's birthday, only to be turned back by the signs that be.

So we said, 'Fine! We'll find another lake to walk around!'
And we did.

Crunchy

2007-09-16T10:19:00.000-04:00

One of our good friends likes to call us crunchy people who live in the wilderness. I take this as a compliment, however it is meant...

We're not living in a straw-bale house, off the grid, with composting toilets or anything (yet) but we do try to live relatively lightly on the land and keep our bodies free of toxic stuff, etc. (as Americans go, anyway).
This kind of stuff became even more important as we were thinking about having kids, and yet more important when Lilienna was born with that extra little chromosome. I get more and more questions from friends on these kinds of things recently - maybe this stuff is catching on? I wanted to throw some of how we live out there - feel free to laugh, ask questions, or give us some fabulous advice... ;)
We buy organic as much as we can. Probably three quarters of the food in our house is organic. Most people either say 'what the heck is organic anyway?' or 'isn't that really expensive?' when this comes up. Pretty much, organic food is raised without synthetic pesticides, etc. - here's a USDA brochure that goes into a little more detail. And yes, it is more expensive at the grocery store, but I think we even that out by belonging to Tait Farm CSA (Community Supported Agriculture) where we buy a share of organic vegetables from a local farm and pick them up every week. Man, are they good, and if you do the math it's a lot cheaper than buying the same conventional produce at the grocery store. I've felt better since I started eating organic, and I'd like to think that Lili has thrived eating mostly all organic food. Check out this site to find a CSA (or farmer's market, crunchy food store, etc.) in your neck of the US wilderness.
We eat gluten-free, which isn't crunchy by itself, but it makes for a way of eating that I think is much healthier. We eat very little highly processed food - cooking is a bit more work than, say, frozen dinners, but it's a whole lot yummier too. Eating GF means you have to 'know your ingredients', so the simpler, the better - which leads to buying more locally made food.
We bought an old house in an old village that needed a bit of love rather than a new one in what used to be woods. Of course, that means more work for us to make sure lead paint and drafts stay away from everyone, but I love our house and the stories it tells.
Well, we're really not that crunchy, because I'm not coming up with a laundry list of other things we do to reduce our footprint. I guess we've changed light bulbs to compact fluorescents, and we drive a car that gets pretty good gas mileage; but I've got a bigger list of things we need to do on this front: insulate, compost, buy wind power, go solar...
Any other crunchy wannabes out there?

Crunchy Lili picking out some mums at Harner Farm

Lili's newest word

2007-09-10T22:03:00.000-04:00

Hugs!
With arms outstretched.

Love it.

The Man

2007-09-08T12:34:00.000-04:00

Some kids get it. It was neat to find an article like this from near where we live posted out on the blogosphere. I saved this link a while ago, and I forget where I found it - but check out this article.

Turtle-K

2007-09-05T21:58:00.000-04:00

Lili's slightly frantic version of bits and pieces of the alphabet, for your viewing pleasure...

Knoebels!

2007-08-24T22:17:00.000-04:00

Lili and Daddy took a trip to Knoebels on Wednesday to meet up with cousin Henry and his posse. Mommy had to stay home to fight off a nasty bug, so a return trip is definitely on the agenda. Lili had a roller coaster of a time - we kicked the trip off with a meltdown (the kiddie ride with the flamingos and fire trucks was apparently not cool).
Things started to calm down, we found some grub, peace and normalcy appeared to be returning to Lili-land...

Then a REALLY LOUD (kid's?) band started playing right next to our little oasis of fries and avacado. So we thought we would try a calmer ride - maybe a pleasant jaunt through the woods on a little train...Lili loves trains, right? ... right??...

Luckily, Pappy saved the day by spotting a quiet gift shop where everyone regained some composure and had plenty of stuffed animals to talk to. The turning point of the trip then took place, as Lili spotted a little playground ball in the gift shop. This little rubber ball proved to be the entertainment hit of the night for our little heroine. She had a fabulous time the rest of the evening playing with Grammy and Pappy and anyone walking by. Daddy even got to check out some of the big kid rides (the Phoenix is a great wooden coaster - always ranks as one of the top ten in the country).
Darkness fell, and Lilienna crunched her pretzels into the night and slept the whole way home. Good times.

Thanks again to Aunt Carrie for the photos...

CCDSS website

2007-08-20T22:29:00.000-04:00

The website for the Centre County Down Syndrome Society is gradually coming together - it's to a point where I'm going to start sending people there to check it out... :)
Stop by and let us know what you think! I know I would have been thrilled to find something like it two years ago...

Chuckin' rocks

2007-08-14T22:51:00.000-04:00

To quote cousin Henry - "Did you see the size of that splash?!?"
She would applaud herself for most of the good splashes. This one got a standing ovation from Daddy.

Fun times at the creek - Lili loves throwin' stuff. She's got quite an arm, so throwing rocks in the creek is about as constructive as it gets. Her glasses flying across the living room, on the other hand...

Expectations

2007-08-11T22:15:00.000-04:00

I have big plans for Lili. Not really plans, exactly - I envision wonderful opportunities and experiences for her. Don't worry, we won't be forcing her to do things she doesn't enjoy. But, I truly believe that I will not deny her any opportunity to try something if she wants to. Society comes up with a lot of "well, kids with Down Syndrome won't do such and such" or even better "Downs people aren't very good at this and that" (I'll rant about person first language another time). All the parents I have met have generally agreed that they want the best opportunities for their children, whether they have special needs or not.

But I challenge you all - do we really give our kids every opportunity? Do we hold them back just a little, saying to ourselves 'maybe when she's a little older' or 'well, he's not so good at that kind of thing'? I'll admit, I've been guilty quite a few times. I'm a clingy dad, but if I get up the courage to let her try something new, she usually blows me away with how well she figures it out. And she's 2. I'm a new dad anyway, so I really didn't have any idea how clever 2 year olds were at all. Little did I know she can climb all the way up into the seat of the bench swing and start swinging herself, or tell me all about her day: "sunscreen, outside, swing!, Jesse, play, the sun, hot!, splash, water, brrr!"
I got thinking about all of this while reading a great post called Was I ever wrong on a now-defunct blog by Michael Berube, author of Life As We Know It and fellow Happy Valley resident. These revised expectations are a perfectly natural, healthy way of reacting to the parenting instinct - we primarily want our children to be safe and comfortable. We don't try to underestimate them, we're just trying to be reasonable. That type of thinking is not exactly dangerous, but can lead you down a slippery slope - planning way too far into your child's future, assuming that they won't do this or might not do that. Forget that. I have no idea what Lili will be able to do tomorrow, but I'm not going to tell her what she isn't able to do.

Walgreens Rocks

2007-08-09T23:03:00.000-04:00

For anyone who hadn't seen this yet - very cool.

Talking scribble on the remote-phone

2007-07-23T00:57:00.000-04:00

This just cracks me up.

"Hello?
- insert deep conversation here -
Bye!!!"

Whoo hoo!!!

2007-07-19T00:58:00.000-04:00

Wow! I won my first blogging award!

BStrong at Down Syndrome Life has given me a Blogger Reflection Award:

B was the the first dad blogger I came across. I was just starting to wonder, 'why do moms only do these blog things?' when I landed on his blog. What a great feeling, to see another dad putting his thoughts out there. The best part was, even though the name of his blog is Down Syndrome Life, much of what he writes about is just normal stuff. His beautiful daughter has DS, but it doesn't define who she is. His open letter post is a fabulous resource for anyone who has been in a situation where people just don't know what to say or do.

I'm kinda new to this whole blogging thing (well, at least the whole commenting thing), so I'm still lurking on some of the great blogs out there. I am supposed to pass this award on to five bloggers - luckily I did some research and I don't think I need to come up with purely un-awarded bloggers (don't you wish you knew that, B?) According to the originator of this award,

"this award should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy... of knowing them and being blessed by them.
"This award is for the best-of-the-best so consider who you pick, carefully. This award should not be given to just anyone. If you're going to do the award don't just write a few words and slap it on your blog. Write real thoughts about these bloggers and what they've been to you, and if the bloggers you pick have already been given the award, don't be afraid to give to them again. They deserve it as many times as it's given."

Here's what BStrong had to say about me:

Archie at Lilienna one of the few dads who blogs about having a child who happens to have Down Syndrome is starting a support group in his community. He is deserving of this award not only because he is a blogging dad and starting a DS support group, but because his daughter Lilienna wears glasses just like my Amanda and I’m a sucker for that sort of thing.

See dads, all you have to do is make a blog and you get an award!! And buy your kid some glasses. And to be fair, some of our friends in this area are doing a whole lot more work than I am to start our support group.

B, I really appreciate you thinking of me. As you have said, we blogging dads have to stick together!

Now for my five lucky recipients:

Rebecca at Just a little bit of something extra. I began blogging simply to post news and pictures of Lili, as our friends and family are spread all over North America. Not too long ago, she stumbled upon my blog and has introduced me to so many things: the fabulous book Gifts, to which she is a contributor as well as webmaster; the blogosphere in general; and her precious daughter Miss E.

Kim at ramblings of the bearded one. I know, he already has one. But it says you can get more than one, I swear. And, like Kim, I think it's funny in a nice way for him to get an award for being a Godly example. Seriously though, Kim is an incredible father and a great writer. I have fallen over laughing at some of his comments and posts.

Emily Elizabeth at Lovely and Amazing. I know, I know, I'm really copying now. She was one of BStrong's recipients along with me. Her blog is packed with fabulous links and information, and until her template imploded (sniff) she had the coolest three column setup to pack in all of those wonderful sites. She is a great advocate for her daughter Emma Jayne, and her stories and views have helped us and I am sure many others, sidebars or not.

Alice at Words About Words. Alice happened upon Lili's blog right when we all needed a kind word - right before her surgery. She writes about anything, especially her beloved granddaughters. As a fellow night owl, I have spent a few late nights perusing her blog and its subtle beauty.

And to complete the loop, Jeff at Big Dawg Tales. Jeff tagged B, who tagged me. You're it! Jeff is an inspiration to me because he is a tireless advocate for his son. He helped start a group for dads in his community, D.A.D.S. (Dads Appreciating Down Syndrome). And, he likes to talk politics without digging a trench on one side or the other of our oddball two-party system. Don't worry Jeff, no more mushy stuff.

And now, for those of you who aren't getting your third or fourth award:

1. Copy this post.
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Place the award icon on your site

Round 2 is on...

2007-07-17T01:23:00.000-04:00

Please vote this round, all scores went back to zero today in the AmEx competition a few posts down - the Awareness Can Build a Family project did very well in round one, and this round is only five days - spread the word!
(Bonus points - see if you can find my rant to a clueless commenter - hehehe)

Cracking herself up

2007-07-14T23:49:00.000-04:00

I wish I could talk to the grass and crack up laughing as well as Lili does. I really wish I knew exactly what she is saying that is so. funny!

Calling all AMEX cardholders...

2007-07-09T22:17:00.001-04:00

Please check out this competition and cast your vote - the Awareness Can Build a Family project could raise a lot of money with your help - simply with your votes.

Playground fun

2007-07-08T21:10:00.000-04:00

Lili's a big fan of swings. That's a bit of an understatement, but I'm not sure how else to put it.

I started this blog mainly to share pictures of Lili and keep family and friends up to date with her life. As we start putting together a local down syndrome support group, I hope some people we may not have met will find this blog and have a glimpse into what our life is like now that she's two. Lili is our pride and joy; she puts a smile on my face many times every single day.

Some things have taken a little longer than they may have with a 'typical' kid; but she's walking, talking, using the potty, etc. etc. To steal a line from Rachel of Signing Time, Lili will do what Lili will do when Lili is ready to do it.

We've been through more medical issues than some families, and less than others. She's had a pretty full life so far for a two year old, I'd say - Lili has been a little glowworm, had surgery for acid reflux, enjoyed birthday parties, been across the country and played in the snow.

There are so many other great blogs out there too - I've got a few great ones in my links section to get you started if you're curious. Careful, they can be addictive. The neatest thing I've noticed in some blogs is a shift in focus away from DS toward everyday life. Down Syndrome is just a tiny part of who Lili is - it was the dominant thing on our minds for her first few days, and has become just another characteristic, like brown hair or a button nose.

Thank you Soeren

2007-06-25T21:37:00.000-04:00

Wow. Exactly what we all wanted to say, but didn't quite know how to say it.

This is from a few months ago, but it's new to me. Soeren Palumbo gave this speech to his high school and has since addressed the Illinois Senate. I won't post the transcript, but just this quote: "I hope that someday someone will love you as much as Olivia loves me."
Good stuff.

Birthday pic fix

2007-06-21T21:36:00.000-04:00

A card from Conti! Yayyyy!
More photos later - we promise.

Welcome

2007-06-12T23:04:00.000-04:00

Well, the organization we are starting is beginning to come together, thanks to many people who have been generously giving their time. We have a name (the Centre County Down Syndrome Society), a P.O. box, and the beginnings of a website. I wrote a welcome message for the website for parents who have received a post-natal (after delivery) diagnosis of down syndrome, as we had. I'm posting the current version below; comments are welcome...

First of all, please allow us to say what many people may have forgotten to mention since you learned of your child’s Down Syndrome: Congratulations on the birth of your beautiful baby! Most of us learned about our child’s diagnosis a few hours or even days after birth from a nervous genetic counselor or physician with good intentions but only a few sheets of information printed off the internet. So congratulations again! There are some fabulous resources out there, but Googling them all may not be what you need right now. Please know that we here at CCDSS are all available to you whenever you feel you are ready to talk to someone, and hopefully we have compiled some good information for you to look over before you may be ready to meet us.

The most important advice for the first few days is this: you are allowed to grieve for your lost expectations, and you may go through all of the normal stages of loss: denial, bargaining, anger, despair, and acceptance. This does not mean that you love your child any less; you are simply now faced with a different path, an unexpected path. But be assured, it is an exciting, challenging, and beautiful path.

Raising a baby with Down Syndrome is more like raising any other child than it is different. Of course there are medical issues to keep an eye on, but basically children need love, sustenance, and clean diapers. There may be more trips to the doctor to keep an eye on things, but as that goes, know one thing: a positive diagnosis of DS in Pennsylvania means your child should be eligible for programs that will take care of many bills not even covered by private insurance. Sign up if these programs exist in your area. We would be happy to lead you in the right direction to find them.

Much of the current stock of literature on DS is a bit outdated. Even in the past fifteen years, advances in medical care have made the future for kids much brighter. There are people with DS getting married, holding real jobs, and going to college. We honestly feel that as long as we don’t hold our children back, they will be whatever they want to be. Ask lots of questions of your doctors. If you are not satisfied with their answers, keep asking or get a second opinion. Be open to finding a new pediatrician if need be.

You are not alone. There are many of us right in this area that have been exactly where you are. If you are not located in our immediate area, we are available by phone or email to talk to you at any time. There are thousands more who have been through this all over the world. The new resource of the ‘blogosphere,’ a huge network of web journals, may be one way for you to get information. There are a large number of ‘blogs’ on the internet written by parents of children with Down Syndrome, as well as message boards that are frequented by parents as well. Browsing through blogs can be very reassuring, as you can see how kids of all ages are doing, learn of the struggles and triumphs of families all over the world, and meet blogger friends that you never knew existed.

We know from experience that this time in your life is an absolute whirlwind. The dust will settle, and once you have a chance to shake it off you will see a beautiful child in front of you waiting for your love. We cannot predict where your path will lead, but we would love to help smooth the way for you.

Walking!!!

2007-06-04T19:52:00.000-04:00

'nuff said.

Brags

2007-05-27T02:50:00.000-04:00

I wanted to post on how Lilienna is doing; no pics this time. Stop reading now if proud parent bragging will sicken you.

She is, all in all, blowing us all away with how cute and funny and sharp she is. But I guess all parents say that about their kids, hmm? We're looking at preschools for a few hours a week when she's older to give her even more time around kids; she loves her friends. She has had such a great time at playgroups at the library and Music Together classes, and of course our soon-to-be-official play/support/hangout group (more on that in a later post).

We are lucky enough to have found an area with an amazing, if informal, support network. Some of our friends are working on creating an official affiliate of the NDSS to make it easier for other individuals and families in the area to find our little posse, and to help in organizing new local events like next year's Buddy Walk.

Lili's had her first few minutes of fame; a local magazine wrote an article about Strawberry Fields, her wonderful early intervention provider. We got to be the featured family. It was an itty bitty article about their 35 year anniversary. They mentioned the 'Mercury' Lili uses (basically a souped up touchscreen computer). She was introduced to this by a great research project Penn State is doing, using augmentative communication devices with very young children. Lilienna just eats it all up; she knows most letters and is very good at letting us know what she wants - either using picture cards, signs, words, or her computer. The computer is great, but I think she has gotten even more benefit from the little laminated velcro picture cards we have in big albums and signing (Signing Time on PBS is awesome). My take on the premise of the study is: why not start using other methods of communication as early as possible? Lili started using the computer at 10 months, and there are kids in the program now who started even younger. And we started signing with her when she was teeny. Her favorite signs now are "want" and "please". Insert favorite thing as necessary. (Being almost two, her favorite spoken word is n.o. No sign needed).

She pushed her stroller clear around Toys R Expensive today, saying 'walk, walk.' Whenever Henry comes to visit, she makes great progress with those big kid things.

Ok, sorry, enough bragging. Time for bed.

Prelude to camping

2007-05-15T23:38:00.000-04:00

Lili loves Grammy and Pappy's new chair - oh yeah! We crashed their campground a few weekends ago and ate all their food, then went home and slept in a bed.
Don't get me wrong; I sleep like a baby in the woods. Literally. If Lili sleeps, I sleep. And she made a connection last year between air mattresses and infatable bouncy castles. Uh-oh.

Wow! We've experienced 'squishy face' before, but this is a whole new level! Pop-up camper screen mesh is extra strong I guess.

Good vibrations

2007-05-13T23:03:00.000-04:00

This little guy, Gabe, is looking for some good vibrations for heart surgery on Tuesday. Click the button for his story. I read about him on rebecca's blog (check out her blogroll in the links section). Gabe's mom's blog is pretty amazing too. Best wishes Gabe!

To all the Moms out there, Happy Mother's Day!

Grasshopper!!!

2007-05-07T22:08:00.001-04:00

Lilienna was having a fun old day at R B Winter State Park, throwing her toys around and whatnot, and then she decided that we had to meet her friend grasshopper (after telling us that a train says chew chew, for those of you who know sign language). So now you can tell all your friends about the 22 month old girl who happens to have Down Syndrome and her grasshopper. She never ceases to amaze us!

Portraits by Aunt Carrie

2007-04-25T20:01:00.000-04:00

Swings are cool!

Slides are cool!

I also like eating my hand.

And standing up is tres cool...

Yay! Henry delivery!

Uncle Archie, you're silly.

Please turn off the sun...where are my glasses anyway?

Yes, I am the cutest little girl ever. You already knew that.

Glasses!!!

2007-04-25T12:37:00.000-04:00

Noah wanted to be as cool as Lili, so he tried on some glasses like hers. Very dignified.

Mr. Incredible himself escorts Lilienna to dinner at the finest restaurant in town*

* (with highchairs)

HI!!!!!!!

First trip to the sandbox of the year, and the sun isn't quite so annoying and bright. Oh yeah, life is good.

Sno no mo

2007-03-15T22:06:00.000-04:00

Winter fun while it lasted!

All this snow is now gone. Well, some is still around in the form of mud, but that doesn't really count. And more may be on the way tomorrow, but if form holds, it'll be 75 degrees next week. So, Lili had some fun in the snow while we had the chance!

And Jasper got to play around with Lili and his brother Cole. Yay!
Oh yeah, and the big faceless snow monster that was pulling Lilienna around.

Baby it's cold outside

2007-02-12T22:09:00.000-05:00

Lili is trying out opera, right in the middle of dinner. If only we had an audio clip...

Check me out! Surfing!!!

Hmm...what trouble can we get into now?

Slackin'

2007-01-30T21:29:00.000-05:00

Yeah, we're slacking. We'll get better, I promise. The dog ate the computer...or something. Yeah, that's it.
Seriously though, Lili's doing great; her new ear tubes are working wonderfully so far (knock on wood). We've passed the inevitable stomach bug around the house, but beside that, we're all happy and healthy. As you can see, Lilienna loves running around behind her little wood cart.

She also loves posing for pictures, especially for Aunt Kathy.

Cali

2006-12-05T19:53:00.000-05:00

To put it mildly, Lili had a good time at the Monterey Bay Aquarium. Soooo many fishies!!!

I think she had as much fun with the people as she did watching all the fish! Aunt Kathy, did you see that?!?

Aren't they supposed to be dancing?

Away with the paparazzi! Release the hounds!

Halloween fun!!!

2006-11-02T23:04:00.000-05:00

Our little fairy princess loves Halloween! Lili handed out candy, then tried a little, then decided to climb the porch railing. Good times!

Lili eats the camera

2006-10-01T08:37:00.000-04:00

Our first crack at posting video, thanks to YouTube. Let us know how it works. I haven't gotten the sound to transfer over yet; check back on that in a few years. I'll try some more clips if this one works out!

Aquarium fun!

2006-09-30T11:04:00.000-04:00

Lili had such a great time at the aquarium when she went to visit Noah! She got to pet the starfish and get up close and personal with all the fishies in the wall tanks and - even better - in the floor tanks! Woo hoo!

Noah gets stung by the plastic jellyfish...

Thanks to Pam for the above photos!

Back home, Lilienna poses to us all one of life's most pressing and mysterious questions:
"Where is Lili?"

Must...stand...up!!!

2006-08-30T18:11:00.000-04:00

Let's begin by noting that Lilienna has blueberry juice on her leg...

She's crawling all over the place, and the general feeling is that it won't be too long before she's running all over the place. Thank you Henry for giving daddy a little practice!

And here we step back in time a few minutes to see just how Lili got blueberries all over her. She has fun when she eats, that's for sure!

Been a while

2006-08-20T00:37:00.000-04:00

Lili loves to jump high in the air (with a little help from daddy) and daddy likes a little workout now and then to keep the flab at bay. Everybody wins again!
Sometimes she jumps really high, and then gravity stops working and she checks out the chandelier for a while. She thinks that's hilarious.

Lili also loves her little backpack. She was checking out Gettysburg from the big people's perspective. Very cool.

George!!

2006-07-14T10:02:00.000-04:00

Lili couldn't wait to see Curious George at Arts Fest. She didn't tell mommy he was going to be there and talked her into going somehow. I believe she said something like 'aba buhbabbah dada mo ap-puh!' that sealed the deal. And mommy thought she was asking daddy for more apples...Ha! Anyone can see the subliminal message to go to arts fest in there.

Fancy camping

2006-07-11T21:43:00.000-04:00

Lili had a great time camping at Shenandoah National Park. She learned that an inflatable mattress closely resembles the big bouncy castle at the carnival she's heard so much about, and thought that most of the time spent on it should include rolling and diving around. She calmed down the second night and really settled into sleeping in the wilderness (if a 200+ site campground really counts as wilderness). The deer wandering around camp made it feel wild, but Lili was right at home.

We thought everyone should experience what we like to call 'squishy face'. Enjoy.

Birthday girl

2006-06-28T22:08:00.000-04:00

Lili likes birthdays. Well, she's only had one, but she really likes getting presents and being the center of attention. Oh wait, that happens all the time. Never mind. But she really likes wearing Pooh ears.

She loves her exercises too. Daddy wishes he could have so much fun doing situps.

The finalists in the world raspberry championship duke it out in the final round. Unfortunately for all you left coasters, Aunt Kathy took home the runner-up prize to our Grand Champion of the World.

Lilienna thinks it's very nice to share, until she wants her drumstick back, thank you very much. Gracie looks more interested in the toob thingy anyway...

Finally, Lili enjoys her new lounger. She can now sit and rock away the minutes while mommy and daddy make her a bottle. Ah, the good life...

Thanks to Grandma for almost all of the above photos!

Memorial Day plus

2006-06-02T22:15:00.000-04:00

Had to steal one from Grandma's camera; it's just too cute not to. Daddy just told Lili a really funny joke and made her promise not to tell anyone else.

No way, daddy! You can't say that!

Lili got to play in her new pool on Memorial Day. Lucky girl; it was hot hot hot outside. She was cool cool cool in the pool.

What? I'm playing! Can I help you with something?

Fairfax County nonresidents

2006-05-07T13:10:00.000-04:00

Lili, Mommy and Daddy went to Burke Lake Park in northern Virginia over the weekend during their visit with cousin Henry, Aunt Carrie and Uncle Jon. We got snagged at the gate as nonresidents of Fairfax County and hit up for eight bucks. I think the missing hubcap gave us away. It was a very nice park...

Lili was in heaven - trees and kids everywhere. She was hanging out in her carrier soaking it all in.
Daddy's been accused of slacking recently on the blog - many apologies. I had a great excuse all written down, but Jasper ate it.

This is being posted from Aunt Carrie's beautiful new Power Mac G5. Droool... These photos are copyright 2006 Carrie Milton Photography, all rights reserved. I just made all that up, except her business, it's real. Shameless plug. (And she didn't get a chance to edit the pictures, either, I just grabbed them straight off her camera. Coulda made us into a painting or tin relief or something with photoshop, but I'm too lazy.)

-Bonus Easter shot -

Two of every animal

2006-04-10T22:32:00.000-04:00

A few shots from Noah's visit with Lili.

How big is Lili? Sooo big!

Jumpin' & drummin'

2006-04-05T17:30:00.000-04:00

Lili loves her jumper, and her doctor says it's a good workout for her legs. Everybody wins!

She's had a great few weeks. She recently decided that baby food isn't cool enough for her anymore. She insists on eating small bits of big people food. Her current favorites are gluten-free applesauce pancakes (one of daddy's favorites too), mango, kiwi fruit, avacado, sweet potato and cooked apples. Her bottom left front tooth is oh so close to popping through; we'll take teething over any of the other issues she's had recently.

Lili's taking after daddy with her interest in percussion. She'll whack anything with her drumsticks...anything.

The whole family (minus the kitties and doggie) is taking a Baby Signs class. Lili already had 'milk' and 'all done' down; the class is really more for daddy's sake.

Roller Coaster

2006-03-16T20:17:00.000-05:00

Lili's getting over a couple of ear infections and a couple of stomach viruses. The last few weeks have been a little rough. She's feeling good again, making sure that mommy and daddy don't get any sleep to catch up for the last few weeks. Her current favorite is to take a half-hour power nap and then play and smile and roll around as mommy and daddy watch bleary-eyed...
We are thrilled that she's feeling better. Her digestive system is starting to work things out and her doctors say she looks great.
Everybody wish Lilienna a happy nine month 'birthday' tomorrow on St. Patty's Day!

Yay!!!

2006-02-23T18:52:00.000-05:00

Well, after a crazy month, Lili is feeling wonderful! She has been sleeping well the last few nights and playing and smiling during the day. She is meeting one therapy goal after another and making us all come up with new goals for her. Hmm...crawl, walk, take over the world!

Here she is sitting up on her own. She can sit up for up to ten minutes by herself now, and catch herself (most of the time) when she leans over.

She's even doing daddy's work for him. The quality has gone way up.

She has a new G-tube called a MIC-key button that sits right up against her skin. We attach a tube to it when she needs it, and can remove it the rest of the time. She's fighting off the last little bit of bronchiolitis, a cold that got into her lungs a little. We're working on getting her a different thickener so her digestive system will have a better shot at working normally. And your tax dollars are hard at work for Lili, as she just got approved for Medicaid. Actually, I think a health savings account would be a much better idea. Then Lili would learn to manage her own health care costs more efficiently. Last 2 sentences: sarcasm.

Hospital pics

2006-02-09T05:25:00.000-05:00

Here are some pictures from Lili's stay in the hospital a few weeks ago. Mommy got to hold her the evening after the surgery.

2 days after, she was reaching for Mommy and getting more alert.

She is doing very well now. We have been battling keeping gas at bay; the g-tube is a big help with that. She is eating very well; we've only used the g-tube a few times to feed her. We've decided to go with feeding her home cooked fruits and stuff (which as you can see by our last post, she loves to eat on her own) and formula, to eliminate the unknown foods that make her uncomfortable. We could run an experiment to figure out what they are, but then she'd be miserable for four months and then go off breast milk anyway.
When the gas or constipation isn't bothering her, she is happier than ever.
All of our initial follow-ups went very well. The incision is healing excellently, and the g-tube site looks fine. It still looks interesting to mommy and daddy, but dozens of doctors and nurses have said it looks good since day 1. The surgeon wants to see her again March 1 to replace the g-tube with a 'MIC-key' button that will be practically flush with her skin. We've also had a nurse come to our house a few times to help us learn all this new stuff.
We'll keep you posted!

Eatin' and drinkin'

2006-01-29T18:42:00.000-05:00

Lili is teaching us new tricks every day. Her independent streak is shining through now that she feels better. I can eat on my own, drink on my own, I heard there's an apartment for rent down the street...

Settling back in

2006-01-29T00:38:00.000-05:00

My apologies for not updating sooner. We've all been home since Wednesday night; it's been a whirlwind since then. Lili is sleeping right now; she is doing better every day. We have a feeding pump we can use at night to feed her anything she didn't get during the day; tonight she won't need it. She ate plenty by bottle and a little extra by spoon today. I'll post some cute pictures when I find the download cable for the camera...
She already seems happier to me than she was before the surgery. She'll have her fights with an air bubble getting stuck, but the rest of the time she is smiling and playing. She is such a little trooper. She would be constantly battling the reflux before, and still was a happy baby. Now she seems freer to enjoy things; she's not being constantly distracted by stomach acid. I hope daddy's reading her right.
The incision is healing beautifully. Babies are incredible healers. When we left the hospital, a nurse said the wound looked like it had been two weeks since the surgery. All the nurses were sad to see her go.
Her first few days home were filled with learning new equipment and new techniques to keep her comfortable. She had some rough bouts with gas bubbles, but that has been getting better every day. The doctors said that is expected from the medications, and it gets better after a week or so. Check.
Did I mention we haven't noticed any symptoms of reflux?
We are settling back in to a house better than we left it. Lili's grandpa 'Oscar' went to town on a bunch of projects that mommy and daddy had been ignoring recently for some reason. To name a few, we now have excellent hot water pressure, a kitchen much closer to completion than a week ago, and Lili's new crib (her Christmas present from the number one fan of her blog) was all assembled and waiting for her return home. And grammie has been helping mommy and daddy get a little sleep, as will grandma marian tomorrow.
Many people told us this would be harder on us than on Lili, and I think they're right. We may feel like we got run over by a couple of cars, but we're so happy that Lilienna is doing so well.

Here's Appendix A: Way too much information on her health, etc.:
Lili is having the expected battle (she is currently winning) with air building up in her belly; thank goodness for the g-tube which can vent the air. We have discovered, thanks to Lili's occupational therapist, a bottle (that we had sitting around) that has cut down on her unwanted air intake by huge amounts. They call it an infant feeder; it's meant for cereals and baby food, but her milk is thickened so much that it works perfectly. The bottom is a disk that slides up as she drinks her milk.
She was also having trouble with constipation, another old problem made worse by the anesthesia she was on. We cannot say enough about how much acupuncture has helped with that. They use tiny little needles, maybe an eighth of an inch long, held on by what looks like a tiny band-aid. We discovered it a few weeks ago in our last ditch effort to avoid surgery. It helped immensely with the constipation, but didn't touch the reflux. The acupuncturist never said it would help the reflux, but we all hoped calming her digestion would help the reflux in turn. I am convinced that her speedy recovery is being helped along quite a bit by how in balance her body was right before the surgery. She had been having bm's on her own for over a week, something that hadn't happened in many months. She has now been going on her own since we left the acupuncture center on Friday. Quick tirade: if acupuncture can work as well as it has for Lili, insurance companies could save ridiculous amounts of money by covering it, avoiding some of the pricey medications people get stuck on. Tirade over. I'm being as scientific on that soap box as I was for Lili's title of 'cutest baby ever'. I really know very little about acupuncture, but it will be on my list of things to try next time I am ill. The doctors have been surprised by how well it has worked for her too. It is interesting how something that has been around for thousands of years is now known of by so few. OK, seriously now, I'm down, off the soap box.
I'm going to sleep now.

Superbaby!

2006-01-24T12:22:00.000-05:00

Lili is progressing very well. She had breastmilk continously overnight through the g-tube, and started eating her thickened breastmilk by mouth this morning. She hesitated for a few minutes, then chugged a whole bottle at 9 am. Now she's almost done a second bottle. She's burping and...um...all waste removal mechanisms are working well. There is always worry with this surgery that the wrap will be too tight and burping and vomiting becomes impossible, so we are thrilled that she is burping. We haven't noticed any reflux either. Wow. She is smiling a lot and playing and cooing, and just wants to be held, and we're going to disconnect all the tubes and monitors later today and take her too see the fishies down the hall. The doctors and nurses are all thrilled with her progress, and we'll probably go home tomorrow. Woo-hoo!

Two tubes left...

2006-01-23T11:13:00.000-05:00

Lilienna is down to two tubes, and one will be gone in an hour. She is 'eating' breast milk through her g-tube and her digestive system is starting to work again. It must suck not eating anything for two days, especially for a hungry baby. She's sleeping right now, after a little fit because her milk was a few degrees too cold. Lili knows what she likes! We'll probably be going home in the next few days, with a fun feeding pump to help along with anything she doesn't take by mouth. Thanks again for all the support, it has helped us all. We'll post some pictures after we get home.

One tube down

2006-01-22T21:13:00.000-05:00

Lili had her annoying n-g tube removed today, to her delight. She's 'eating' pedialyte through her g-tube now, and should be promoted to a more 'advanced' diet tomorrow. She's also due to lose more tubes tomorrow, at least the epidural and bladder catheter (I keep forgetting what they call that one). She slept really well for most of today; now she's a little fussy about her itchy nose and probably p'd off that she's been in the same room for three days. At least we got to hold her for a bit last night and today. That should be much easier after more tubes bite the dust. We'll try to keep you posted!

Recovery

2006-01-21T15:59:00.000-05:00

Well, here we sit in Danville. For those from the area, you know that means we're a little crazy. Anyhoo, Lili is resting and recovering from her surgery. She had a 360 degree (Nissen) fundoplication, which means they took the top part of her stomach and wrapped and sutured it to her esophagus. She also had a G-tube inserted to help us feed her, if needed, and help vent her stomach as she may otherwise have been pretty bloated for a while. The surgery went very well. She is pretty fussy when she's awake, but sleeping very calmly most of the time. I'd be fussy too. She has five tubes in her right now (G-tube, N-G tube, epidural, bladder catheter and I-V); hopefully that will go down by quite a few over the next few days. Not to mention the pulse oximeter and respiratory probes stuck to her. (Google any of those you haven't heard of). The folks here at Geisinger have been very attentive and are doing a great job helping Lili (and her folks) get comfortable.
Thanks for everyone's thoughts and prayers; they're working! From the site counter, it looks like Lili's a star right now. We love her, and if you're reading this, I bet you do too.

the Archie theorem

2006-01-17T18:55:00.000-05:00

Lilienna hams it up with her new huge stuffed caterpillar!
Lili is 7 months old today.
She's doing great overall (besides the reflux). She weighed 16 lbs 15 oz at her checkup the other day. She's almost sitting up by herself and trying to turn pages in her books. She is (proven by the Archie theorem and confirmed by double-blind independent testing) the cutest baby ever.

Health update

2006-01-16T21:08:00.000-05:00

Hi everybody!
So sorry it's been so long between posts. Lili's a busy girl!
Lili is scheduled to have surgery to help with acid reflux on Friday. All of us (her health care team) are worried about the possibility of her reflux going down the 'wrong tube'. She drinks thickened milk to help her swallow, but you can't thicken reflux.
So, we've tried every other approach: diet, positioning, Mommy's diet, every medicine imaginable, but they don't take care of it.
So... she's going to have a fundoplication, where they take the top part of the stomach (the fundus) and wrap it around the bottom of the esophagus, to form a one way valve. We're very anxious, of course, but hopeful that this will help her in the long run.
Just wanted to give you all an update...more cute photos to come soon!

Santa came to town!

2005-12-30T23:01:00.000-05:00

Lili loves her new bead maze thingy...

...and her new train!!

2005-12-22T20:54:00.000-05:00

Merry Christmas from a Happy Lilienna!

Giving thanks

2005-11-30T22:47:00.000-05:00

Lilienna worked very hard getting the house ready for Thanksgiving, and her cousin Henry wanted to show his appreciation.

'Uncle Nick' takes in his first intoxicating encounter with Lili. Ain't she cute?

Bathtime a few days before Thanksgiving! Check out the fancy plywood countertop and walls - oooh... We'll post some pictures when the kitchen's done. (Check back in 2007)

At Long Last

2005-11-14T20:22:00.000-05:00

Here we go...a totally staged, two - weeks - after - Halloween picture. Oops. She's really cute though, so hopefully you'll forgive us. We'll throw in some more pictures, trying to make up for it.

Lili loves her daily massage. Daddy's jealous.

Cousin Henry's high chair was a little imposing for her, but she held her own just fine.

Lili smiles...

Takin' a walk

2005-10-27T21:36:00.000-04:00

We're stealing some photos from Grandma Marian's stash for this post. Lili loves going for a walk, be it down Main Street in Manayunk or strolling around Longwood Gardens. She perks up whenever Mommy or Daddy puts on her sling and she loves to gaze at trees and people and flowers and stuff.

We promise...pictures of Lili in her Halloween costume will be online shortly!

The Move

2005-10-21T19:15:00.000-04:00

Let's play Match the Caption with the Photo!

Can you spot the 1950's football star in this photo?

Grandpa 'Oscar' plays some 3D Tetris

Before the move, Daddy and Mommy's friend Renee threw a little surprise B-Day party for Mommy

Larry exults as 'Oscar' and Brendan show their excitement over filling an entire house with stuff

Lili enjoys some rice cereal in her first days in her new home - mmmmm...rice...

Cousin Henry drove all the way up for the big event

The Archibalds and the Miltons pose in the yard

Renee displays the furthest anyone would bring our stuff (just kidding)

Larry got a little kickback from Penske

Renee takes one last wistful look at the old place

Aunt Kathy's visit

2005-09-22T21:13:00.000-04:00

Lili loves to smile at people! She loves dancing to Beethoven's Ninth, as sung by mommy. She also enjoys Aunt Kathy's whistling christmas carols. A music student already!

Fashion Show

2005-09-12T03:19:00.000-04:00

Lili is ready to step out on the town.

Daddy-daughter day

2005-09-08T22:57:00.000-04:00

Here we see daddy trying to weasel some predictions for NFL week 1 from Lili. She may have it all figured out, but she's not telling. This picture just missed Lili straining to lick daddy's nose. Mmmmm...nose...