Little Liam

Changes

2012-01-23T17:09:00.000-08:00

As time continues to move on, I am realizing that with that theory, decisions about Liam's future are starting to become a reality. I haven't written much about Down Syndrome lately and I can't say I am bothered by that. For the most part we go about our day to day lives and the craziness that is just a part of our every day the way most other parents would describe their own.

Therapy is part of our lives-each of our lives. Our therapists, each one of them, are a part of our family. They show up each week, some bearing tools to try with Liam, others bearing coffee for me;) but each week they are here...they are present. I have learned to lean on these women-some having been with us since Liam was 4 weeks old prior to his OHS, around throughout his recovery, and during the most difficult transition of weaning him off a feeding a tube and learning how to drink/eat real food. I love these women for being pseudo moms/grandmoms to my kids, huge supports to us, and treating our family with nothing but the upmost respect.

They are beauties I tell ya.

I want to keep them.

Unfortunately this is where the "decisions about Liam's future" comes in. Liam is done with early intervention when he turns 3--in June. How do I send my little guy (no seriously, really little...he's the size of a one year old) to school? Shouldn't he just be home with me? I can protect him from the harsh world that might not take kindly to Liam or his disability. It's so scary. I don't know if we should chose an IU classroom or a "typical" preschool or a combination of the two. We met today, his whole team, to address new goals and IU testing, possible scenarios/settings that could work- in less than 5 months.

Part of me is excited that Liam will get to be in school a couple days a week...he loves his class that he is in on Thursdays, he barely even notices when I leave;). I hear nothing but positive feedback from his teacher. He cooperates, he sits down and participates, he follows simple 1 and 2-step directions. Liam communicates with signs and few words. He has many sounds he uses for words, but they are still just approximations. He is a full-time walker, really gaining confidence and speed! He has a little personality, giggles at Grover and is the friendliest little guy. Last week at school we passed Maeve's-(a little girl in his class who Liam really took too)-mom in the hallway and said "Hi," and Liam waved excitedly. I thought Maeve would be back in his class but she moved on to a preschool room since she is already 3. When we talked about Maeve that night at dinner and how she was in a new class, Liam got super bashful and covered his face-the way he does when we tell him how handsome he is...So it's official. Liam has his first crush, and let me tell you, she's adorable. A little reminder that above all, Liam is 2 1/2 years old. Maybe we just need to be reminded of that more often...

I believe Keith and I will make the right decision. We are leaning towards 2 mornings of " typical" preschool and 2 in an IU classroom and where he can continue with his therapies. Soon this blog will be detailing our little man's new chapter, and our hope is that like every new chapter, every new challenge Liam will continue to do what he's always done... Make us overwhelmed with pride.

Tired pups

2012-01-06T09:15:00.001-08:00

A morning of fun and exploring at the Please Touch Museum including an appearance from

Chica from the Sprout Good Morning show=

7 Tired kids ready for naps!

Holiday Happenings

2011-12-26T16:47:00.000-08:00

The holidays in our house gave us opportunities to celebrate with good friends...

Playdates for kiddo's and mimosa's for the mommies;)

Baby Sean and his simply smitten Mama...

Our efforts to get a good group shot

Emma, Grace holding Sean, Connor, Michael, Liam and Molly

2011 Picture with Santa

Immediately after Santa pic, playing at Giggleberry Farms "Discovery Zone"

(PS-he walks. everywhere. all the time. It's been awesome.)

The faster, crazier, and out-of-control she can try...the better. Yikes.

Gone fishin'

Practicing being a teacher. She totally walks with hands folded behind her back. You should of seen her with the erasers. She was clapping them just like how I remember the Nuns teaching us in grade school. I started to comment on that and what a great "eraser clapper" she will be in a few years at her school and Keith reminded me that schools use smart boards now-or at least white boards. I am always about 5 years too late. Hence trying to burn a Christmas CD before our open house and asking Keith where our CD player is to play it. Note to self: try to hunt a "new" one down-not ready to part with my mix CD's...

Liam is super into animals and the sounds they make these days. I have found him lying down on his belly, all stretched out playing with his farm, hiding his animals, putting them in his trucks, etc... He makes up his own little games to play. The other day I came downstairs to find him in this basket, all the animals in there with him and his barn set up right next to him.
And then his sister got in the way...
And into the basket she went.

Christmas Morning!

Already we were ahead of the game since we had two babies who were both healthy this year and no one threw up to start our day like last year;)

Trains, farms, and puzzles, Oh my!

Oh the pom-poms...just look at the joy on her face!
And again, dozens of presents to play with and the $1 slinky I picked up as a last minute stocking stuffer at Michaels got the most attention.

...Until they spotted the Kitchen that we put together upstairs for by the tree...that was a good surprise:)
Babies were slightly spoiled in a really good not over the top, crazy way, and Keith and I enjoyed so much just watching them take it all in. What a wonderful Holiday with family and friends. Will be posting more Christmas Eve pics from Mom-Mom's and Christmas Day from Mamo and Pop-Pop's.

Wishing our readers a Blessed New Year...2012 looks to be a good one!

2011 Christmas Cheer

2011-12-11T16:46:00.000-08:00

Merry Merry!

The list keeps growing...

2011-11-29T15:13:00.000-08:00

Loads to be thankful for this year...but a couple things stand out above the rest. We were down at CHOP last week for Liam's sedated echo. We got some great news that his heart looks good-in fact better than the last images they took in July. Most likely this is because his medication was increased at that last appointment, which means his heart responds well to other interventions before they even need to think about operating again. We bought ourselves 6 more months until our next visit and oh how sweet those 6 months will be;)

And not to be out-done...Emma is learning to sign! She walks around most days signing "more" and "dog" and "up" etc... It's been fun to watch her watch Liam and learn from him. What a special relationship that is budding between those two.

Like every year we are thankful for our families, our friends, and for each other. We are very blessed and I am reminded so every single morning I wake up in our cozy home.

And lastly?

Our little man is walking...I mean like really walking. The clip below shows just a few steps, but this boy is clearing rooms, easily. I know it may not seem like a big deal to some, but we have waited 2 1/2 years for this time. He has worked so hard to get here and we are just beaming with pride. Best part? He got to show-off for all his grandparents, aunts, uncles, and cousins over Thanksgiving...the cheering from them was his biggest reward;)

Can you tell me how to get...

2011-11-16T16:28:00.001-08:00

How to get to Sesame Street...or for me, how to get it together so I'm not posting pictures three weeks later!!
Great day at "the street" (Robert California reference)
We didn't get to see Elmo, he must be in high demand, and while in line to see Cookie Monster he stepped down and the count took his place...Liam is not into the count and frankly, he gives me the creeps too! I think the characters in general were a little "much" for Liam, maybe next year he'll be more into them. He did wave to every one we saw, even bert and ernie, though he could have cared less to go see them;)

Below are a few pics from the day. The highlight for Liam by far was the ring toss game...he could've played for hours, and those of you who know Liam best know how much he loves a good ring toss!

Better Late than Never...

2011-11-03T19:09:00.001-07:00

The Fisherman and his "catch of the day"!

Happy 1st Birthday Emma!

2011-10-29T06:30:00.001-07:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

Pumpkin Party

2011-10-22T19:11:00.000-07:00

Can she really be turning 1 already?

Emma & her cousins...

Great day to celebrate our girl...the only disappointment was that Liam who is recovering from a virus was unable to be with us. He stayed with his Mamo and Pop-Pop who graciously offered to keep him, and who I know made sure that he had a good time.

Once he's feeling up to it, he's got some M&M's waiting for him with his name all over it!

Insert foot in mouth and hands and Ewww!!

2011-10-19T15:47:00.001-07:00

If that title didn't seem gross enough...keep reading. Last week our house caught the virus "hand foot and mouth disease." I watch a couple of children through the week with my own and all of them have gotten it. It's incredibly contagious and even after scrubbing and disenfecting like crazy, Liam appears to be the latest victim. High fevers, poor appetites, and general crankiness, oh and lack of SLEEP, has been the theme around here and I am anxious to call this last week a wash-literally-and move on! We have fall weather to be enjoying, walks to be a walking, and leaf piles to be a jumping;)

On a more positive note, a couple weeks ago we met up with our friends at Linvilla Orchards-great day and fun had by all!

The 2 birthday girls...Emma and Molly-both turning 1 in a few days!

She Walks the Line...

2011-10-06T16:37:00.000-07:00

Another walker-this one a little more steady on her feet. My prediction is she'll be doing laps this time next week. I am dreaming about days to come when I don't have two 20+ pounds babies in my arms!

Notice Liam in the background watching his favorite Elmo video of the week "Elmo Loves You." This kid is koo-koo for Elmo!

Enjoy the video

Another "Rough Cut" Weekend

2011-10-03T17:19:00.000-07:00

As the weather turns crisp and leaves begin to change from ordinary green to vibrant crimsons, oranges, and golds, I become restless. I need to wake up on Saturday mornings and get going, stopping only for coffee as we set our for our day with a long list of nothing to do. There is an excitement that goes along with autumnal smells and sounds of the seasons. I think for me it means anticipation of what's coming...babies in footed jammies, cheesy Christmas music on 24 hours a day-yes, I admit it-I do enjoy me some cheesy radio Christmas carols, and extra reasons to "get together" with friends and family because hey, it's the holidays. I love all the seasons for different reasons, but not one gets the same amount of attention that my beloved fall gets...it's just that simple...

And in the midst of the beginning of all of the chaos that goes along with this busy time of year, our family got to take a weekend trip to one of our favorite places...the Rough Cut Lodge. And even though it rained from start to finish, the trip away to see some of my favorite people was good for our souls.

First stop at Bloomsburg to see our niece Moira. Moira is a sophomore in college and much like I compare fall to my favorite time of year, sophomore year was my favorite year...ever. I won't go on because my family and friends will stop reading this post and there's good pictures to come!

Moira and her baby cousins...they love her!

ROUGH CUT LODGE

Our friend Brooklyn..what a little hostess:)

Silly boy!

I think the pics of Liam and Emma are so funny sometimes. They look so confused in this pic, but so sweet and so innocent...

All bundled up, did I mention it was 40 degrees up there?!

(Hooray)

We got about 20 minutes or so outside which means our next trip we'll have brilliant sunshine!

The whole group...some of my favorite people right here in this pic. I never laugh as hard as I do with them--cheers guys, for another great weekend.

And to our wonderful and gracious hosts, Doug and Diana...Thank you for everything!!

First Day of School!

2011-09-15T15:54:00.000-07:00

This little guy had his first day of school today...he woke up in a great mood, and seemed ready for the challenge...

He was super excited...and so was his "sissy." That is what Liam calls Emma these days...it melts my heart
Liam was in a preschool classroom at the YMCA. It was so stinking cute and he immediately signed "down" when we got there. He started exploring...
And when I came back an hour later, Liam was sitting on the carpet, playing with a book and ready to show me his art project. He got an A+ for the day. They had free play, circle time with stories and songs, a snack at the table (they served cheez-its, which happen to be a Liam favorite:), and they ended with bubbles. I am so proud of what a good boy he was and no tears! That includes me too;)
A big milestone in our house, the first day of many first days of school for our sweet boy. You've made us so proud once again little man!

The Little Dipper

2011-09-05T16:17:00.001-07:00

"I'm a big kid now!"

9 month check-up and other goings on...

2011-08-24T06:29:00.000-07:00

Super chubby legs? check

Sweet baby face? check

Adorable pudgy cheeks? check

Baby girl is 19lbs 12 oz, can you believe she's still trailing Liam? He's got her beat for a little while longer;) She grew almost 2 full inches since her 6 month visit too! Emma Kate has become quite the little ham-very similar to her brother. She is sweet and pretty adaptable although she does have a little "crazy girl" streak in her as well...her screams can be ear-piercing and come from out of the blue, but usually they are around wanting something that someone takes from her (I wonder who?)or of course, wanting something from the table!

Emma is saying "Mama" and "Dada"...music to my ears. She stands by herself and cruises everywhere, I think she'll take some steps soon. So funny that both of my babies will be walking soon...what a nice break it will be not lugging not 1 but 2 babies around. Emma is finally sleeping through the night. No more middle-of-the-night nursing sessions, she goes down around 7, and sleeps till around 6. I would love if she slept longer but hey, I'll take a chatty, happy baby waking up early rather than an angry, hungry baby screaming at 3am;)

In other news, Liam is going to school!! Let me clarify...Liam will be starting a 1 hr a week program for children readying themselves for preschool. It's called, "Time for Me" and it is 1 hr, every week, without me. My little man...all by himself-such a big boy! When we went for a visit and Liam did very well. He was a little flirt with all the ladies that he met. He walked only holding my one hand as support all around the classroom and in the end, he started to clean-up the toys with only one verbal prompt--his therapists would be so proud;) Emma and Liam will be taking a music class together this fall as well, just working on the logistics of scheduling that one. They both love music and dancing and I think it will be fun to do a class together with them and hopefully with Daddy too.

Happy Burns household because the windows have been open all week, we've been going on fresh,crisp morning walks and there's that lingering feeling like fall is in the air...our favorite ♥

HE'S WALKING!!!

2011-08-09T17:49:00.000-07:00

WOO-HOO!!!

I'll let the video speak for itself...it started in PT this morning and carried all the way through to this evening and 6 independent steps to daddy...we are on cloud nine!
More to come as our "walker" starts really moving!
Go Liam Go!!

August 4th

2011-08-04T00:02:00.000-07:00

I wonder when or even if this date will ever come and go and I will remember it only as August 4, the date my first beautiful niece Moira was born. Will I ever not see those last dates in July on the calender and the first few in August and replay them minute by minute, second by second, the events that unfolded the summer of 2009. The day the Doctors took us up to the 11th floor and I handed over our baby to the anesthesiologist. The hours that passed as we waited for news-any news. The nurse with the dark red hair who was reporting back to us from the OR. Us being escorted to that small, pastel colored conference room where we waited for our surgeon to explain to us what went wrong. Will I ever forget the way our baby looked-chest open, bypass machine pumping blood into his swollen and listless body? Will I ever be able to close my eyes and not see him lying there? All the while keenly aware that Keith and I were struggling to keep it together while our family and friends felt so helpless-offering everything they could but knowing even that wasn't enough?

I am not sure if the time will ever come when I don't re-live this day, the week prior, and the months to follow. But I am not really sure that's a bad thing. What doesn't kill us makes us stronger. Sometimes looking back can be just what we need to see how far we've come.

We made it.

2 full years later post-OHS.

And this month we celebrate 1 whole year of no Ng tube...things just keep getting better for our boy.

He did it.

Today we celebrate life...we celebrate the past no matter how scary, and the present-no matter how uncertain. It teaches us to love bigger and to love stronger, and it reminds us of how truly precious life is.

Happy heart day, to all our loves:)

(Even Elmo gets extra kisses today:)

Super Fun Shore Trip!

2011-08-01T10:11:00.000-07:00

What an awesome shore trip!

Babies slept on the beach (while holding on to their purses...best $2.50 I have spent on this little diva-her pretty pink purse that she carries around now...everywhere!)

Taking WALKS on the beach with our boy...what a joy!

More cat naps....

...And more;)

Here comes the action...Emma was the perfect beach baby...LOVED the sand, the water, crawling all over and eating quite a few handfuls of sand...

First time ever on the beach? She lasted over 6 hours...and played right on through adult happy hour;)

And Liam? Day 1 started with him signing "all done," when we first stepped foot on the beach. 6 hours later it ended with him begging for more wave-jumps!

cute sibling pics

Thanks Aunt Molly and Uncle Steve and all of the McKenna's for such a fun trip!!

xoxo

The Dog Days of Summer

2011-07-25T17:08:00.000-07:00

With each heat wave seeming like days turning into weeks, we are just trying to stay cool and find things to keep us busy while we try to beat the heat, and still enjoy the "dog days"...

(even though it's blurry, I love the look of surprise...we read this book at least 67 times a day and still, Oscar gets him every time;)

Little babies looking cute and trying to find snacks in the diaper bag...

Art projects

standing...anything to get this boy balanced and WALKING!!!

Uh-Oh! (signing)
messy pipsqueek markers!

It's simply too hot for chubby babies to wear shirts to bed!

finding other ways to use his box of blocks...

Road trips to Mom-Mom's pool!

Playing with cousins-Kalie, Jake, and Megan

These are some of my favorites. Liam loves his cousin Kalie and gets to see her often. Kalie is at the great age of 6 and wants to play with the little ones. This is her and Liam playing school, she is reading to him. He is entranced by her and I think that's one of the reasons he got picked to play ...he's an easy student;)

It was hard getting him to look at the camera!

so silly!

A quick heart update: Liam saw his cardiologist last Wednesday. Good visit, things still look the same, no changes. We did decide that a sedated echo in November is our next plan of action. Once we get a better, longer, and more detailed look, we'll be able to see how his mitral valve is holding up. Our Dr. does seem confident that we will have about a 6 month "heads-up" prior to the surgery which was a relief for Keith and I to hear. The more prepared for this we can be, the better. Although we are scared of another open heart surgery down the line for Liam, we know what we are facing and our Dr. does believe this next one will not be nearly as complicated as his first. Our prayers and intentions remain with that hope. All in all, good news, good visit-more updates to come in the future.

Hoping our readers are enjoying their summers!

Next up this week-Emma's first trip to the beach!

Here comes trouble...

2011-07-13T10:24:00.000-07:00

Exhibit A:

Even Liam lets her do the dirty work now... he's no fool!

Oh Boy!

Happy 4th!

2011-07-04T17:50:00.000-07:00

Our 4th of July weekend started with a trip to the mountains and a white water rafting ride for Daddy! We stayed with great friends and ate great food, and Mommy and Daddy stayed up too late drinking great drinks;)

Emma & her Auntie Lindz

Liam's new favorite way to ride in his stroller...don't worry he wasn't actually moving here!

Hooray!! Happy 4th of July 2011

...and to some of our best friends out there...thanks for a GREAT weekend!!

Baby Looooove

2011-06-27T08:26:00.000-07:00

About a year or so ago I was just about 6 months pregnant with baby number two, and Liam was 1 year old. I didn't know how crazy life would be with two...it felt pretty insane with 1-aside from even all of Liam's medical needs. Fast forward to the present...I have a 2 year old and an 8 month old and life is hectic, no doubt. But life is also very fun-in the "I have two babies and can barely start-albeit-finish a meal or a sentence," type of way. In the, "Let's tag-team bathtime and then snuggle up to watch a little baby mozart before bedtime," type of way. In the, "What the heck was our life like before we had two kids?" type of way. We eat, sleep, and drink babies...and when the day is done, I still wonder if each got enough attention, if Liam had enough to eat, if I remembered to give Emma her vitamin D drops. More than that I wonder if they can feel how incredibly loved they are...

We knew that Emma would be a motivator for Liam, as each of his therapists told us happily when we shared the news that we were expecting. What we didn't realize is how soon we would see this shift. When Emma started crawling, Liam took off-on all fours, something he did only every once in awhile. When Emma started saying "da-da", Liam said it louder. And now when they climb, they climb together, using one another as little supports. Liam boosts himself off of Emma's leg, Emma barrels over Liam. They are little troublemakers...Emma opens the snack drawer and holds it open while Liam digs in. They wake eachother up and squeal/babble at eachother each in their own crib across from the other. The best is how they light up when they see eachother. These moments when you catch them just smiling their biggest smiles when they realize, "Hey..it's you!" That's the kind of love that feeds my soul, that makes me believe that life really is this sweet, this simple.

That kind of baby love...

Well really, it's just the best kind there is:)

Fathers Day

2011-06-20T04:28:00.000-07:00

Happy Fathers Day Daddy...we love you!

All day long Emma babbled "dada"-something her brother taught her;)

And here are the Stats

2011-06-16T10:19:00.000-07:00

Liam is 19 lbs, 13oz and 31 inches...he is our little guy;)

He can walk with assistance..has taken a step or two here and there when he's feeling super confident and usually between two people or pieces of furniture. He cruises all over and pulls himself up wherever he can, including the refrigerator, our sliding doors, and dressers.

Liam has mastered crawling on all fours and is awesome at the "bear crawl"...pretty hilarious to watch him do that one;)

Liam has about 20 signs in his vocabulary and uses them regularly. He says "da-da," "yes," "hi," "I did," and "this". Still no mama, but lots of the "mmm" sound. During speech on Tuesday he said "du" when prompted for duck and "shhh" for sheep.

Liam eats like a king. His favorite snack is pizza-flavored goldfish. These days chicken on the grill and ham & cheese sammies are his favorites too. Milk is his drink of choice and we are still having to sneak in fruits and veggies, hiding them in his food. He does try a lot more now that his sister sits up next to him for meals. What she tries, he'll try-it's amazing how that works!

Liam's 2 year bloodwork for thyroid checks, etc...came back normal and his exam was too. He continues to see his cardiologist and we go back in July for a follow-up. I am hopeful his next surgery is still a ways off, we should know more next month.

Liam still sees his GI Doc since he was tube fed up until last August, and he gets his eyes and ears checked regularly. We have been lucky and healthy minus a couple stomach bugs this winter. We hope that luck stays in our corner for sure.

We are proud of you little man!

2nd Birthday Wrap-up!

2011-06-05T17:33:00.000-07:00

We got to celebrate this weekend...

This year it was all things ELMO!

Emma was very helpful

Well...we can call it helpful...

(now if only he'd keep his new hat on!)

Emma chasing after her big brother...he was too fast to catch on film!

new swim vest

And it all comes to this; in the middle of opening gifts Emma took over, Liam lost interest and decided to go upstairs, found a pad of post-its and took a break...

Post-it's, tissue paper, and envelopes-seriously?

Later we had a picnic in the park with our buddy Brayden

And then we celebrated that night with Liam's cousin Ryan who

celebrated his 15th bday last week, too

loving all the attention

(and the cookie cake)

Today there was MORE celebrating!

Lucky boy!

And more rounds of "Happy Birthday" followed by a few more rounds of

"Hip, hip hooray," Something Liam has become quite a fan of;)

And more clapping...

more cupcakes...

And LOTS more smiles...chocolate-covered birthday smiles...

My new favorite kind!

Happy 2nd Birthday to our little man...

you amaze us every day Liam, we LOVE you!!

Liam Turns 2! at OneTrueMedia.com

2011-06-02T19:06:00.001-07:00

Make an on-line slideshow at www.OneTrueMedia.com

Summer is here!

2011-06-02T18:19:00.000-07:00

Just a quickie post before tomorrow...the BIG DAY! Our little guy turns 2! Here are a couple pics from Memorial Day weekend-

Trying out the sippy cup since she can't keep her hands off of her brothers, we figured, "What the heck? Let's try it." And so we did, and it worked;)

Baby loves her fruit...watermelon, kiwi, blueberries, strawberries and of course..

PEACHES!!

First dip in Mom-Mom's pool

It was a success!

Stay tuned for tomorrow's video...

here's a little hint: hip, hip, HOORAY!!

Pixie Girl!

2011-05-26T18:52:00.000-07:00

Baby girl got her first haircut today...

Because even with the air on and it being near 90 degrees this baby was hot and bothered when trying to nap so I made the executive decision...it was time for a cut!

And when I got home, after I realized that I forgot my camera to chronicle this milestone and because the stylist needed to remind to collect the locks of hair she had clipped for Emma's baby book (yeah, right)..I started thinking about Liam's first haircut. He was so sad (Emma barely noticed-she couldn't take her eyes off herself in the mirror), there was SO MUCH HAIR he had gotten taken off, and my gosh how it seems sooo long ago.

I realized, however, it really wasn't that long ago. In fact, oddly enough, It was one year ago. Exactly one year ago.

(Liam's locks are still in the above envelope)

How about that coincidence for ya?

Emma was actually at both first haircuts;)

A couple head shots:

What a ham!!

Standing, swim lessons, and sippy cups, Oh My!

2011-05-22T17:08:00.000-07:00

You know when you have one of those weeks...you know one of those weeks...super busy and lots happening all at once? Well that was our last week, so bare with me...we have lots to re-cap;)

First we'd like to welcome to the world Baby Luke Michael! Our friends Jeff and Becky (P.S. how great does this new mama look?!) are proud parents to their new little love who is healthy and so handsome! I got lots of snuggling with this little baby this morning...it felt like it had been awhile-ha! He's perfect and we just couldn't be happier for them.

Look who's STANDING!!! All by himself, for up to 10 seconds at a time. He is SOOO happy when we get him all pumped up to stand all by himself...he is doing his famous "hooray!" in the pic above. We are off using walkers, and making him take steps with only little bits of support. This week we are trying a hula hoop with us on one side and him holding onto the other side. Our PT sais that this can be one of the last tools needed before some baby steps (literally) start! We are excited to see our boy move, in his own time, of course.

This little one...or maybe not so little...at her 6 month check-up she was 18.6lbs! This was Emma eating yogurt, blueberries, and banana flavored puffs

We can no longer hide eating around her. She used to be happy to sit and move around on the floor with a few toys while we ate dinner and before she nursed. Now she sees us sit at the table and she wants to sit there too. She will eat ANYTHING and recently has been enjoying lots of mashed up fruit and vegs, chicken, cheese, waffles, even some pizza! We love how easy the eating has been going for her, one thing about Liam that was-and still can be-a big challenge. Oh right, and since this is my virtual baby book, let's mark the date...5/21/11...Emma's first bottom tooth cuts

(And they say the 2nd baby gets forgotten;)

My mommy friends got together for a little playdate at the Please Touch Museum. What an awesome place for the kids...I forgot my camera, so thanks Melissa for letting me steal these pics from your blog, Bridget-still waiting on the 87 pics you took of Liam's first trip to the museum on a blog entry-ha! Aimee I am sure those pics are already organized and posted on yours;)

Here are all the kiddos following the outing for a little pizza lunch...what a great day-topped off by a three hour nap for the babies that afternoon!

Liam LOVES his swim lessons! He's doing really well and gets super excited when he sees the pool-he is loving jumping in (holding my hands of course) and enjoys the interaction with the other kids in class...it's been fun to watch him gradually get more and more happy to be in the water-just in time for the summer!

Oh yeah, she's movin'. It's so funny to watch her get up and get going. She is determined.

Liam's new favorite thing?

Wagon rides!

He LOVES his wagon. I think we have tire marks in our backyard and I swear Keith did the loop 55 times this afternoon, easily.

And guess what? Big boy is off the honeybear cup and drinking from a straw sippy cup with handles. What a difference! Along with a new cup we have a new binky regime...binky only at nap and bedtime...the binky stays in the crib where it belongs the rest of the day. He's one week down, and so far, so good. He'll be 2 in a couple weeks...we gotta break some habits for our toddler!

2nd cousins get together-Erin and Makenzie were in from Oregon for a little wedding planning and a little family time this past week. We got a chance for the cousins to play

(please ignore the spit up on my sweater)

Makenzie is about 2 months older than Emma and they were very sweet together.

We're looking forward to the wedding/visit in August;)

Liam wasn't super interested in the girl babies, he was too busy working on his mamo to give him some wagon rides

he didn't have to try too hard...;)

This next picture will probably make you say, "Huh?"

Please just take note of the chub on Liam's arms...

Hmmm...

I feel like I've seen this chub somewhere before...

Long winded post-lots of firsts, changes, and triumphs...we are happy, healthy, and overwhelmingly blessed.

Emma Kathleen's Big Day

2011-05-15T16:19:00.000-07:00

Godparents, Uncle Steven & Aunt Casey

Emma and Aunt Karen (Kalie in the white)

Uncle Paul stage left, Aunt Jeannie, Brendan, Aunt Molly, and Ryan

Emma sleeping through her party...typical...

Liam enjoying Emma's nap-all attention back on him;)

Aunt Robin, Megan, and Aunt Jeannie

Aunt Caitlin, Aunt Casey, Chris and Uncle Sean

Emma and Mom-Mom

Liam and his Mamo & Pop-Pop

What a perfect Day!

My two little loves...

2011-05-10T14:29:00.000-07:00

....make for one lucky mama;)

Happy Belated Mothers Day to all the mama's out there

(especially L &E' s Mom-Mom and Mamo)

It's a hard knock life

2011-04-29T04:56:00.001-07:00

It's a tough life for these Burns' babies...

#2 is learning to crawl because hey, if she wants a toy...

She's gotta get it herself, right?!

And bottles?

Forget about it!
This kid has got that down pat;)

As for our firstborn, he knows what his chores are...

Please take note to how efficiently he can unfold laundry!

And naptime? No rest for the weary...

that is unless you get your own pillow

Gotta run, I hear the pitter patter of little feet and the floors need to be cleaned...

Disclaimer: these babies only appear to be over-worked;)

Happy Easter!

2011-04-24T17:54:00.000-07:00

Beautiful day...Happy Spring!

Are you happy?

2011-04-11T16:28:00.000-07:00

how about now??

A little of this, a little of that...

2011-04-06T11:22:00.000-07:00

Just some new pics...enjoy!

starting to sit up straight..

crawling on all fours!

getting stronger...and chubbier:)

so sweet

a picture of the twosome is always a gamble...

it's a keeper!

Sleeping Baby; Happy Mama;)

2011-03-31T11:02:00.000-07:00

(a little blurry-we tried)

Another little update...

Emma had a rough night Tuesday into Wednesday, she was up off and on from about 2-4am, but we stayed strong and stuck with the ferberizing and she made it a full 8 hours before eating in the morning around 4:30. Last night was awesome! She ate around 8:45 and went to 5:30am!! Just about 9 hours, not a single peep from her all night...it was amazing!! One thing we did a bit differently is we really bundled her up and she was super warm and cozy when she fell asleep nursing, I think that was a huge help. When she first came home from the hospital, she lost a little weight and one of the nurses had me undress her to get her to stay awake and alert. Hence the opposite, in this case, appears to be working;)

We continue to cross our fingers and hold our breath and hope that this little girl doesn't wake us from our dream...and we mean that quite literally!

Winning!

2011-03-29T06:19:00.000-07:00

Woo Hoo!

If I had a "like" button on this blog, I would "like" Dr. Ferber...and his method!

Ms. Emma went down with minimal tears only needing several binky replacements and a few comforting words from mama. She had two times through the night where she lost her binky and after 8 full hours (4am) she woke up hungry, ate for 20 minutes (much to my relief;) and then went right back down in her crib until 6:30am! She got up, played, got changed and didn't need to eat until about 8:15am- so about 4 whole hours after the good feed at 4am!!
Do I dare suggest this could be working??

More to follow tomorrow... As of 7:30pm, she went down to bed with a couple minutes of fussing-fingers crossed!

Our 100th...

2011-03-28T18:13:00.000-07:00

As I sit here and write this 100th post, I have to say I feel quite....lucky. Lucky for many reasons, one of them being that a little someone who clebrates her 5 month bday today is sound asleep in her crib, after just a few tears and some fussing.

Lucky because of this boy right here...this little guy, who prefers stacking rings, blocks, and anything that is well, stackable, over any other toy...even the loud and flashy ones;) is learning new skills, new signs, and new ways to communicate with us including some emerging speech, and we are excited about it.

Lucky because the little ones like eachother-scratch that-they love eachother so much. It's those sweet wet kisses kind of love

(The best kind)

Lucky because this little guy felt like standing on his own last night and again today, and luckily I caught a few of those victorious moments on film...

100 posts

We've come a long way, baby's...

To the next 100...

Cheers!

Good news; bad news

2011-03-27T06:24:00.000-07:00

So you want the good news first? I realized that one of my posts was a draft that I had started and never finished so this is NOT the 100th post-It's the 99th, and I promised a positive post and pics for the 100th, right?!? (You see where this going...) Bad news: Emma had a fever for a couple of days, more than likely something viral, but because of this, we slacked off on baby boot camp. Emma has gone down somewhere around 10pm the last couple of nights and when she wakes up around 1am or so, she just spends the rest of the night in bed with us. I was so "that girl" that used to say "I will never let my kids in bed with us," before I had kids. Funny how things change;) Starting over tonight, hoping for a good one, and looking forward to the real 100th post tomorrow!

Night 2

2011-03-24T17:24:00.000-07:00

Oh Boy! Another night down; what like about another 230 to go until this sleeping thing works?!?

Emma ate a good feed around 11:30pm. She had a very, very fussy evening leading up until about 8pm when I gave her some tylenol to relieve what appears to be some teething that's going on. She was so miserable, it was pathetic. Anyway, around 4:30am Emma was up for a feeding. So considering she went for about 5 hours, and she's not really feeling very well-I let her eat. Truthfully it wasn't such a bad night. Emma went right back to sleep and then got up around 6:30 to start the day which is fine by me...the closer to 7am, the better;)

This afternoon we had a little setback as Emma spiked a high fever (over 102) following her nap and has not been herself since. After a bath, 2 rounds of tylenol to bring the fever down, she just now went to sleep...in her swing, after nursing off and on since about 7:30. Obviously, tonight this baby will get to sleep snuggled up to her mama and hopefully she'll feel better in the morning. She gets a break from boot camp already-after just two nights. I have to say it; well played Emma...well played;)

Hoping for as decent of a night that it can be tonight and realizing tomorrow will be our 1ooth Post! I feel like it's gotta be a positive one, right? Positive post with pics...that's a promise!

Update- Night 1

2011-03-23T12:25:00.000-07:00

Here is a timeline of the events of last evening:
7:40pm; Emma's last fully-awake feeding...she snuggled with daddy after her meal while her mom and dad watched "The fighter" (not super-impressed with the movie itself, although the acting was excellent, in case anyone is interested).
Emma went down after her night feed-a good & hearty one, at around 10:45-11:00pm
11:01pm-Mom and Dad asleep.
2:15am: Emma up. At this time, I tried the binky, rocking, soothing, making "sssshhhhh" noise, all in efforts to make it the 6-8 hour stretch...realizing, sadly, that we were only 3 hours in.
At around 3:20, I got desperate and moved Liam downstairs to sleep with Daddy in our bed (Emma & Liam share the biggest bedroom which allows plenty of room for 2 cribs, dressers, and extra space for play:). In my desperate state, I also clung to the hope that maybe I would get to sleep again if I brought my pillow and blanket upstairs and laid in between the cribs, and in between the cries and consoling.
Not. so. much.
By the time 4:10am rolled around-I gave in. I brought Em downstairs with me to lay and nurse. I figured we got 5 1/2 hours down, it was the right decision for both of us. Baby steps, right? And very appropriate I might add.

So tonight I am hoping for a little bit longer of a stretch. Push for 6 hours and expect that it may only be three again. I will stick my ground and show this baby that she can do it, I know she can.

...As visions of sweet, sweet, uninterrupted sleep dance around in my head...

Baby Boot Camp...round 2!

2011-03-22T14:05:00.001-07:00

Let's turn our attention to this little one:

"Who me?"

Doesn't she look so innocent?
Well let's just say that this sweet baby is a challenge at night. I use the word challenge because that is the nicest I can think of to describe her when the sun goes down and the lights go out. Challenge because unlike the rest of our little family, Emma-lu-who does not like her beauty sleep. So what to do, what to do....

This baby is going to baby boot camp! Here's the plan...beginning tonight, Emma will have her last feeding around 10 or 11pm. I will try to keep her awake so that she can nurse both sides and go to bed with a nice, full tummy. When she awakes, I will comfort her with a binky or by rocking, and I will cut off the late-night hourly or bi-hourly feedings-she would nurse all night if I let her, so I have to be the parent (once again) and say enough is enough! At Emma's last PCP appt, her Dr. told me it was time to start this healthier pattern-she is going on 5 months old next week and at this point I'd say 17 or 17+ pounds. She is perfectly healthy and ready for this change, but I think it will be hard, no less. Her Dr. wants her to be sleeping at least 6-8 hours a night, preferably more, with a good, ample feed in the morning. I would love to hear from other mama's who have been in the place we are in and have any words of encouragement, suggestions, or other ideas that have worked for them...we are open to it all!

I have decided to blog daily while on this little adventure. It will keep me focused, maybe help someone else, and for sure will come in handy in about 16 years when Emma is keeping me up at night for entirely different reasons ;)

So my sweet, innocent baby girl...here's to long, peaceful nights in the near-very near-future!

She looks like she already knows something is up, doesn't she??

Oh well, here's hoping!

Happy St. Patricks Day

2011-03-17T07:49:00.000-07:00

I wonder if Emma will become a ham like her brother is for the camera;)

Enjoy the day!

A new Phase

2011-03-10T07:12:00.000-08:00

Can you tell I just figured out how to use the video function on our camera?!

Liam has been on the move...standing tall, crawling, going up and down three flights of stairs on his own many times a day, and most recently walking-quite well I might add-behind his push toys. He is taking assisted steps and is loving being up and about...trouble is on the horizon...his therapists think it's only a matter of time....;)

We are so proud of you Liam!!

On a quite different and somber note, our family experienced a very sad loss of someone very important in our lives the other day. Barbara was an inspiration to any and all who knew her, and a crusader in the fight to end cancer, which ultimately took her own life in our opinion entirely too soon. She was one of the most determined, yet kind-hearted women we have ever known and she will be remembered that way by many. Our deepest thoughts and sympathies go out to Charlie, Ben & Sarah, Greg & Jess, and little Olivia, and all the other friends and family who were lucky to have Barbara in their lives.

2011-03-07T17:44:00.001-08:00

Please enjoy some laughs from the peanut gallery...in between his bites of chicken and rice.
We bet you can't help but laugh along;)

For selfish reasons...

2011-02-24T16:57:00.001-08:00

...I write this post. Tomorrow I leave for my first "girls" weekend/reunion in Pittsburgh, my first time away for 2 nights baby-free. As my excitement grows to see my girlfriends, so does the pit in my stomach to leave my babies. I guess we all go through this one way or another, the guilts about leaving, but knowing you are doing a good thing for yourself and ultimately your family by taking a break-and enjoying it! I look forward to seeing my girls; and I am sure by Sunday morning I will be anxious at the airport, to get home to see my loves...

So this leads me to this post...so that I can check-in several (yeah right, several;) times to see my cuties. Selfish? Well can you stand the cuteness?!

(half kiss/half lick, but pure sweetness;)

Babies, candy, and some good lovin'

2011-02-11T17:03:00.000-08:00

What a hoot those RHof DelCo are!! These mommies planned a little Valentines Day party for the kiddies (10 total, all under the age of 3:) The kids are adorable, and these ladies are some of the nicest and fun mama's that I have yet to meet since becoming a mom myself. It was a great day and I loved how thrown into the mix Liam was...it is unbelievably refreshing to just see Liam as a little guy, minus all of the therapies, exercises, and stress that comes along with his needs. I LOVE when he can just be a kid, like all the rest, putting things in his mouth he shouldn't be, being told to share toys with the others, and standing up with the big guys at the Thomas table.

Pics or attempts at pics are below, enjoy..

Can't wait till next time girls:)

Amd here's some of the good lovin I was referring to..

the sweet little love taps...

My funny Valentines

Hoping all of our readers get their own good lovin' this Valentines Day!

(P.S. And CHEERS to another happy hearts day!! Liam made it through another year; healthy heart and all!)

*Also in our hearts, our dear friend Mike and his family as they grieve the loss of a loved one...our thoughts and prayers are with you...

A BUNCH of firsts!

2011-02-01T16:40:00.001-08:00

It all started yesterday, just an ordinary Monday...

This little one was ready for her first taste of cereal (mixed with breastmilk). Let's just say Sunday night was the straw that broke this camel's back (literally) and we decided it was time to see if some cereal would help with the recently long nights of lots of feedings.

She had her cereal, and ate it too. Success? The jury is still out. We'll have

to check back after a few more nights on the regime.

Emma's other first?

A bottom tooth is cutting!

This is probably my favorite "first."

I've been waiting 20 long months for this one...

He signed "Mama"

And although all you signers out there would argue that this looks more like "daddy"

Liam signs this for his mama; when he wants to be picked up, when I do pick him up, when he sits up in his crib, and when I ask him to say mama-he does his sign enthusiastically...Mama.

I didn't realize how much I needed that.

The joy on his face after making his mama so proud
(There was a lot of clapping:)

And our last first of the day? Liam climbed up 2 stairs ALL BY HIMSELF!!

I was shocked-this standing, climbing, and now really starting to cruise the furniture has seemed to come a little more easily for Liam than say the sitting up or the crawling. I am certain I will miss the days when my little guy wasn't getting into everything not bolted down, but for now? Now I will enjoy watching him explore...

And when he tires from a morning of exploring....

I will carry him to his crib

because even when your legs are learning to move on their own,

there is still nothing like being carried by your mama*

What a ONEderful Cause

2011-01-13T10:59:00.000-08:00

Around this time last year, a blogger friend linked up her blog with this one. I didn't realize then what this blog would be do to the DS community-the blogs, support groups, and the NDSS. "Enjoying the Small things" has made such an impact in so many people's lives, their perspectives, and the way that they see the beauty in life. If you haven't ever read the blog, a great place to start is Nella's birth story. In the end, if someone were to ask me what made a difference in my life-I would be able to answer that question, having read this entry. And the words that still tug at my soul when I think of them? "Love me. Love me. I know I am not what you expected but oh, please love me."

Our Liam was not what we expected, but he is so loved. If you are looking for a ONEderful cause to contribute to, consider this. The original goal was $15,000, then $30,000, and as more donate, the goal gets higher. The proceeds go to the NDSS-for all of our babies who, in the beginning, we may not have dreamed of, we may not have expected, but that we all love fiercely. The mission of the NDSS is to create a culture that fully accepts and includes individuals with down syndrome.

And on that note, how about spreading that kind of love in a WONDERful world?
Let's Pay it forward

Small Victories

2011-01-12T09:52:00.000-08:00

Just a couple pics to share as we hibernate this winter, keeping warm inside and out of the cold

Still working on that clutch picture of the two little ones...one of these days we'll get lucky with two smiles smiling back at the camera;)

And a small brag? A little man took two side-steps on his own while cruising the couches this morning...all in effort to reach the honey nut cheerios just out of his reach!

Holiday Wrap Up

2011-01-02T16:47:00.000-08:00

Oh the holidays!

I had this vision (here I go again with the perfect scenes playing out in my head;) of Christmas morning. It went something like this...Keith and I lazily waking up and getting Liam out of his crib all snuggled up in his jammies, carrying him and Emma down the stairs to our den and watching Liam's eyes pop at the sight of our Christmas tree lit-up with the piles of presents underneath. All of this followed by the sounds of paper tearing and Liam's excitement amplified in his little shrieks and laughter.

Instead, our Christmas morning started out by sounds of moaning coming from Liam's crib followed by an unsteady trip down the stairs to the den. Instead of tearing open the presents, Liam started throwing up. The awful and very-contagious stomach bug that is going around got the best of him and we spent the rest of Christmas day and the next three days down and out with the little man. This bug quickly spread through to the rest of us though sparing Emma, thank goodness. Happy to say that minus his appetite still not being where it was before getting sick, he has recovered well and is back to his old self again, enjoying his new toys and even a (tight-gripped) ride in his new little red wagon, as pictured above.

Over the holidays the other little one started really smiling...

....and she's been practicing perfecting it ever since, and we are loving it:)

Our best gifts this year? Two happy and healthy babies, a cozy home, and our family and friends...all blessings to us.

Wishing everyone a peaceful 2011!

Little Rascal...

2010-12-16T08:12:00.000-08:00

Making a beeline at bedtime

...and this little one learning all of his tricks;)

18 Month Update

2010-12-02T16:22:00.000-08:00

A whopping 18 months old, where has the time gone? I never, ever imagined I would be saying those words a year ago, but here we are...just another one of life's surprises. Many milestones have been met, and many others still lie before us, challenging Liam to push himself harder. It is hard to watch sometimes, all of the therapies that this little boy has week to week. He is currently receiving 3 hours of OT/wk, 1 hr of PT, 1 hr of special instruction with a teacher, and 1 hr of Speech therapy. It is hectic around here with people in and out of our home but we love all of our therapists and they adore Liam. Here's a little update of what Liam has been doing and what we're working on these days.

Eating:
Liam is a good eater! He will try most everything, but has preferences for sure. He eats best when it is a social experience for him. Dinners are great, he will eat everything Mommy and Daddy eat, especially if he gets to eat off of their plates;) He feeds himself very well using his pincer grasp and actually prefers to do so. We are working on using utensils, but he still requires hand over hand assistance for that. Liam chugs-literally-his liquids from the honey bear cup with a straw, and we are starting to work with an open cup...slooowly!

Moving:
Liam commando crawls everywhere! He actually is almost more like an inchworm, I have no idea where he learned to crawl the way he does, but man he can move, and fast too! He does do some crawling on all fours but since he goes faster "his" way, he tends to do that crawl more. He is happy to kneel, pull to stand, and is attempting to get up the stairs these days. He received his orthotic shoes this Wednesday and I am told the difference they make is amazing, and to us anything that can help him is worth it! Liam has been able to stand for long periods of time with support or leaning on on activity tables, push toys, furniture, etc...He still needs to work on balancing by himself for longer stretches. He has taken several side steps to cruise around our couches, but I think the full-out walking will take a lot of time and patience to get to.

Speech/communication:
Liam says "dada" and that's about it. Many times it sounds like he is saying, "I did," and very appropriately when you ask him something, but I am not convinced;) He LOVES to babble, yell, fluctuate his voice especially when he is excited, but he is still mostly experimenting. I am OK with this b/c although he is behind developmentally across the board, there are weeks where he will work sooo hard on a new skill and all the other areas we are working on kind of take a backseat. For instance when Liam started really eating and drinking this summer, his crawling didn't take-off for weeks while that was going on. Once his eating was established, he started to crawl. Liam has been improving with his signs-he knows eat, more, all done, drink, up, music, bath, and responds appropriately to all of them. He has his own little way of signing "what happened?" too. He consistently signs a few of the above more than others, but it has been so cool to watch him start to "get it." We are currently working on adding in please, thank you, dog, mom, and dad. Anyone interested in signing for their little one, I would highly recommend baby signing times, Liam loves them!

The last 18 months have been quite a ride, but we have learned so much about life, love, and family. Liam is so innocent and always will be. It is humbling sometimes when I think about the job we have as his parents, to raise him in the world we live in. I am so grateful for the patience he has taught me and how to just slow down and savor his accomplishments. He works so hard to attain the skills that many take for granted, and we couldn't be prouder of him. We aren't the only ones either...his grandparents, aunts, uncles, cousins, and friends are wonderfully supportive and equally as proud of our Liam. His personality and smile can light up a room especially when he tells his "baby jokes," or plays a game of peek-a-boo, or grabs your hands to ask for his favorite song, the itsy bitsy spider.

So, my little love, reading this entry someday...After 18 months together we are still absolutely, positively, 100% smitten with you...

You are a JOY!

Thankful

2010-11-24T08:04:00.000-08:00

So very thankful...

For so very much!

Happy Thanksgiving

Pure Sweetness...

2010-11-16T14:37:00.000-08:00

Our two babies, a brother and a sister

This one so peaceful, so content, and sooo sleepy...

This one enjoying the benefits of two tired parents;
donut munchkins and milk for breakfast, extra treats from the store, time out with Daddy, and loving his new role as a BIG brother!

What greater a gift than a sibling(s)?

Our parents passed on that gift to each of us...

And for that we are forever grateful.

Our hope is that Liam & Emma get to experience the same kind

of love that's shared between siblings
Because there's nothing that compares!

Progress!

2010-11-10T06:44:00.000-08:00

We are making progress in the motor development department. Liam is now pulling to stand! He pulls up on activity tables/toys, our couches, Keith and I, steps, tables, stools, etc.. I would say it's about a 50/50 ratio; he needs our help 50% of the time and he does it on his own the other 50%. Another skill we are working on is Liam standing-as you can see from above, having something behind him makes him feel more secure and his balance is improving dramatically. Wednesday during PT he stood by himself and played with puzzle pieces in both hands...a great test of strength and stability to be able to do that on his own with no added support.

Liam with be fitted for suresteps orthotic shoes that will aid in his attempts to stand, cruise, and eventually walk. I am surprised- for how long it took this little guy to crawl, his attempts to stand just came a little more naturally, a little less forced, and with a little less effort needed on his part. It's been so fun to watch-and a reminder that soon our house will be baby-gated!

A sweet, little...

2010-10-31T18:20:00.001-07:00

...GIRL! Our newest latest and greatest surprise!

Emma Kathleen, weighing in at a hearty 8lbs, 4oz and 21 inches long, arrived safe and sound on October 28, 2010. She is doing great-has a healthy appetite and enjoys her long snoozes!

This is something we can all appreciate I'm sure...well, at least the moms out there. So I had this great idea that for Halloween, I would get a picture with Liam & Emma-he in his lion costume (he has been roaring since the summer, so is well-practiced to play the part;) and Emma as a pumpkin. I thought of the header being something like, "The best pumpkin in the patch," or "Look what I picked out," etc, etc...You catch my drift. I thought of how cute that would be as a little announcement. The picture-in my head-was adorable. The picture in real-life, well....

Not so much..

And here we are now shoving the adorable little pumpkin out of the way.
So much for that perfect picture in my head, right?!

Liam barely notices Emma except when she cries which is seldom for now, or I guess as shown above, when we dress him up and make him try to hold his sister for the camera...

We are enjoying the calm settling in at home and I look forward to a sweet brother and sisterly love picture to post soon!

Baby Kisses!

2010-10-21T11:28:00.000-07:00

At the advice of many, a baby doll appeared in our home a few weeks ago to "prepare" Liam for the change that is about to take place. Not sure if the doll will do the trick to ready Liam for what is about to rock his (and our) world, but it did work to teach him how to give baby kisses!

Big, wet, slobbery ones!

Old Homestead Farms

2010-10-09T15:32:00.001-07:00

The weather, the candles, the foliage, the crockpot meals, the pumpkin spice treats...
The brightly colored mums, the autumnal wreaths, the open windows and front doors, the chill in the air that makes you grab an extra blanket for bed...
The most perfect time of year in our opinion, and in Liam's too!

And looking forward to meeting our new little pumpkin soon...very soon we hope!

The Bump...

2010-09-29T00:54:00.000-07:00

...Or as Liam sees it, his seat. Less than 4 weeks to go (could it really still be that long?!) and we are ready! I have cleaned out closets, organized our attic, created storage space in our laundry room, and packed probably 18 rubbermaid plastic containers, all in preparation of our new little bundle. Nesting has taken over, this house is spic and span and now? Now, we wait.

Oh, and we try to agree on a name;)

*Check back in for a video of our CRAWLER! Yup, it's official...Liam can MOVE! Still haven't stepped into this decade with posting videos, but I'm working on it..stay tuned!

The good old ticker...

2010-09-15T15:46:00.001-07:00

...Just keeps on ticking!

We got another blessing of good news for Liam. His cardiologist was so happy to see him looking so healthy (and handsome:) She took some stats, ran his pulse ox and pressures and decided that no, this little man doesn't even need and echocardiogram this visit. In fact, let's push another visit off for 6 months...6 whole months!!

Relief! Such sweet relief and much gratitude for such great news heading into the fall/winter seasons, a new baby set to arrive next month, and of course, for this adorable little boy with a heart of gold.

And who, by the way, is completely oblivious to all the relief felt by his parents, family, and friends and is way more interested in his newest trick...

"Where's Liam?"

"Peek-a-boo!"

YAY!

(poor Gus!)

An Essay...

2010-09-11T10:45:00.000-07:00

What I did on my Summer Vacation
By: Liam Burns

Since it has been 4 months since I last saw my heart Dr. who told me to enjoy my summer, I thought I'd run down a list of what I did during the summer of Liam

-I got my first haircut (and 2nd, and 3rd:)
-I ate my first real piece of birthday cake for my 1st Birthday!
-I got to ride on a carousel ( a few times!)
-I played with my cousins A LOT

-I went to my first carnival and dad won me a stuffed frog
-I swam at my Mamo and Pop-Pop's pool
-I went to my first real baseball game

-I ate funnel cake!

-I swam at my Mom-Mom's pool

-I tried my dad's famous BBQ cooking...yum!
-I went on my first family vacation, down the shore
-My toes touched the sand and the ocean!
-I swam at Aunt Jeannie's pool
-I rode the rides at the boardwalk

-I slurped up delicious watermelon and relaxed with my mom and dad on our deck
-I had playdates with my buddies Brayden, Connor, Lily, Brooklyn, and more!

-I had sleepovers without my mom and dad and with my grandparents...and they spoiled me rotten:)
-I went to birthday parties, graduation parties, and a baby shower!

-I learned how to clap, play peek-a-boo, give high-fives, and roar like a lion!

-I got so mad on my belly that I actually crawled...and I have been doing it more and

more-inconsistently-but I know I can do it now!

I'm sure there are more things I am leaving out, but my mommy couldn't remember everything and I am only 1, so that's all for now.

(P.S. I have my big heart check-up this week, so think some positive thoughts for me and my mom and dad that everything still looks good and we can push off that next surgery for a long, long time, OK?)

This Year...

2010-08-29T16:07:00.000-07:00

Last year on the weekend of our 1yr wedding anniversary, we were so relieved (and quite proud) to be able to post this

Amazingly, we made it one full year with no trips to the hospital, no surgeries or pending surgeries, basically no baby drama...well, I guess the exception would be the baby who will be making his/her appearance in less than 8 weeks!

So this year not as exciting news to share like last years, but hey we'll take the calm...gladly!

Happy 2 years babe!

NO MORE TUBE!!

2010-08-19T06:11:00.000-07:00

Yup! You read that right!

No more tube feeds for this little guy! He did it! After 15 months, Liam is big enough, strong enough, and healthy enough to cut the tube feeds out! As our nutritionist said yesterday, "He's nice and chubby-I don't see many kids like this!" So after our GI came into our appointment and saw that Liam had gained back some of the initial weight he lost since d/c the tube, she said no more tube and now we just concentrate on keeping him on his growth curve, allowing him to grow at his own pace. We'll continue to see his GI and nutritionist every couple months, and in fact we are going to keep up with the weight checks every few weeks for everyone's own reassurance. For a baby who was literally unable to take even a couple ml's of his formula back this spring, he is now taking 16-20+ ounces of milk/day, eating three meals and enjoying snacks in between! He is amazing!

And PS...guess who's crawling in the tub?! And for the past week or so, Liam has been ALL OVER the place! He is transitioning all of the time from belly to sitting and from sitting to belly. All of the sudden, he wants to move! This is one of the biggest changes we have noticed in him, so we are thinking the crawling may be any day now? One celebration at a time, we know, but Liam has never really played by the "rules" before, so why should he start now?

Baby needs a new pair of shoes!

2010-08-16T05:25:00.000-07:00

For those of you who don't already know, Liam is not a fan of pants. He would much rather be in a onesie with nothing restricting him-even better a simple diaper will do. But since he has now taken his diaper off in his crib a total of 3 times, the onesie is a necessity. Since summer is winding down, we will slowly re-integrate pants (shorts, overalls, etc..) into the wardrobe and the other article needed? SHOES! This baby never wears shoes anywhere and on a recent trip to our library, he was playing on the floor with other kiddies...all who had shoes on. So here he is...not so sure about the shoes...

Note-still no pants! Taking baby steps!

"Alright, I have had just about enough of these..."

Still not so sure about them, and not seeming too impressed either!

But I guess when you got legs like these why not show 'em off, right?

Staying the Course...

2010-08-11T08:25:00.000-07:00

Operation: "Lose the Tube"

Here are the stats: off tube for 16 days, lost 1/2 lb. Completely expected when tube feeds are discontinued to drop some weight, as long he is eating and drinking, there isn't cause for concern. Liam was around the 50% in weight (12th for height...he's so little!)
He is now closer to the 25% in weight...and closer to his height curve, which I have been told by his Doctors and therapists that you want to see that. Too big of a difference isn't necessarily a good thing. Liam's GI thinks that the 25% may be more of an accurate sizing for Liam and as long as he stays around that number, she is more than pleased. We meet with a nutritionist next Wednesday and will continue weight checks every 2 weeks until his weight stabilizes and we take it from there. So as of right now...we are still tube-free! It has been nerve wracking at times, but we really believe that pumping ounces of calorie fortified formula into Liam at night while he sleeps is not the solution. He may just not have as much chub as he did earlier this summer, and who knows? This could also help him get moving, since we are still heavily working on that goal.

We are encouraged by our Dr's support and we hope that soon we can put the tubes away for good and close this chapter in our lives!

Quick Question-anyone have any tricks they have used to get their babies to take medicine? We already have Liam's medicines flavored. I have tried spoons, bulb syringes, regular syringes, cup and straw, I even cut a slit in his binky to see if he would take it better. A lot of blowing raspberries and letting the medicine leak out of his mouth is what I usually get from him instead of just swallowing. Not looking to make this another battle with him, but hoping someone has tried something that worked well. He does not take really any type of "mushy" food consistency (i.e. stage 3 fruits or baby food of any kind) to hide it in. Any suggestions would be great!

And it's been about a year...

2010-08-02T14:45:00.000-07:00

...Since our little man went in for open heart surgery at the tender age of 8 weeks old. So this post is for Liam, the bravest boy we know....

Dear Liam,

You might not know it yet, but you are a hero to many, many people. In your short little life you have already been through so much, but judging by your smiles you'd never know that secret. You came into this world with a hearty cry and with your eyes wide open-looking into our own, as if you were searching for something. We never in a million years could have imagined how much we would love you-that day, or the ones to follow. You are the reason why we believe in "love at first sight."

Liam you have shown us how strong you are, how brave you are, and all that you can handle, AND...you are the happiest little fellow we know. How come, Liam? Do you know something about life that Daddy and I don't know quite yet? Maybe it's that old saying that you're "wise beyond your years." Honestly, that wouldn't surprise us.

Our dream for you Liam is that you grow up happy, loved, and that you are given every opportunity to achieve whatever it is that you believe in, because we firmly believe in you. And guess what? So do so many other people-all of your family and friends, and some sweet souls that you haven't even met yet.

Our most precious gift, the reason we wake up in the morning excited to see what our silly boy will do that day, and wonder how someone who is only 1 can make us laugh harder than anyone else ever could try. Here's to you, our little Liam, on your very own heart day... because of you, our own hearts are overflowing with love.

We love you Baby!

XOXO

Mommy & Daddy

PS. And here's to another year full of happy heart news!

It's been about a month...

2010-07-26T08:39:00.001-07:00

...time for another update on the tubie;

Liam has successfully made it through two weight checks. The first he had gained several ounces, and most recently, he gained only one ounce. Not very surprising considering we were on vacation so his routine was altered, and at the end of our trip he developed and eye infection (most likely from the sand and/or water.) Since he already has a partially blocked tear duct, the infection brewed which in turn lead to cellulitus. He was on an antibiotic and eye drops that worked well-but the antibiotic gave him same diarrhea, a common side effect. He cut a front tooth during that time also which caused a shift in eating. So I feel like we are back at square one, but ready to move forward. We have discussed trying to cut out the night feeds for a few nights to see if he is still just getting too much liquid overnight and not feeling hungry for the better part of the morning. If most one-year-olds are getting a night bottle or snack before bed and sleeping through the night without needing feeds, that would be something like 10-13 hours without food/drink, thus waking up thirsty and ready for breakfast. Liam still gets at least a 6 hour feed at night, only giving him about 4 hours or so to build up his thirst/appetite. He does not want to drink in the morning, and is not really interested in eating until lunchtime, sometime around 12:30-ish.

I caught myself actually saying last week, "Well he didn't eat well today and is not very thirsty so we can just add to his night feed, right?" WRONG! I can't have that attitude, even after the trying days. If a child has a rough eating day, most parents don't have the option of dropping in a tube and making sure they get those calories. You just have to try harder the next day, and the day after that, and on and on. Liam needs to be given every opportunity to succeed with his eating-we know he can do it, in his own time, and we need to support that. SO-the decision has been made. We will be seeing how Liam reacts to waking up with an empty belly and we'll get creative with food options and hopefully-with lots of luck-we will be updating in a couple weeks that things are improving on the eating front;)

And by the way for those who are curious and have been asking, the crawling is still being worked on- daily, hourly, all the time over here! We have affectionately named it baby boot camp and this little guy is working hard to get moving. We are seeing improvements and his therapists are encouraged. Hope to have some good reports on that soon too!

Shore Trip Photos

2010-07-18T04:23:00.000-07:00

First feel of the sand, taste of the ocean, and day at the beach!

Nap time!

Wonderland Pier rides-a classic for the Jersey shore goers:)

The cousins hanging out, watching Baby Einstein

More beach time!

Yay for vacations! We all feel refreshed and are so happy and thankful we got the chance to spend some much deserved family time. Here's to the next one...summer of 2011!

Liam's Turn!

2010-07-06T07:16:00.000-07:00

Liam here! Summer is moving along and I have been having lots of fun! My mom and dad told me that I get to go "down the shore" and see the ocean and feel the sand next week...I can't wait! I have been swimming like a fish so far this summer and playing up a storm! These days I prefer to be standing, rather than sitting or really anything else!

We still have to work really hard to get my muscles to strong enough to crawl! I think I might just like to walk and skip over all the crawling fuss, but my mom and dad and my therapists still make me try!

Hope everyone had a Happy4th!

Dwindling Tubie...

2010-06-28T13:16:00.000-07:00

This is a picture of a happy guy after his GI appointment!

So here's the story-since Liam's 1 yr check-up two weeks ago and us adding more dairy and whole milk to his diet, he gained about 13 ounces! It's working! Liam is just about 18lbs now-his GI Doc was so proud:)
Since Liam eats and drinks dairy she agreed that a "milk challenge" was not necessary. We brought along a morning "present" from Liam which revealed no blood or other signs of an allergy to milk. We got the green light to continue to increase Liam's intake-she said kids around this age should be taking about 3-8 ounce bottles/cups so that is our goal. The plan is to drastically cut back on Liam's night feeds and gradually decrease hourly as he ups his oral intake of liquids. More specifically, starting tonight Liam will be getting about 12 ounces over 5-6 hours at night instead of about 17-18 ounces over 8-9 hours. We also need to keep a food log and begin working with a new nutritionist to ensure Liam is getting what he needs calorie-wise. He will start weigh-ins every 2 weeks while we move in the direction of discontinuing the tube, and adding things like carnation instant breakfast to make up some of the calories lost that he was getting with fortified formula at night. The best news? Our GI expects that within a month or two (if not sooner) we can eliminate the tube!!!

I do a lot of reflecting back to this time a year ago and today I think of us sitting in Chester County Hospital ER-me trying to pump, Liam's labored breathing, Keith looking so pale with panic. Not for one minute do I take our blessings for granted. We realize that it has taken a lot of work to get here and that Liam still has obstacles to overcome, including another heart surgery. For now though, we can celebrate this great news, this huge milestone of Liam's, and we can revel in it!

Thanks to everyone for their support, suggestions, and most of all, for loving this little boy!

Update to previous post

2010-06-26T15:28:00.000-07:00

I decided after many attempts and lots of trips to the store, that I needed to remind myself that I am the adult, and Liam is the child. He is only 1, and honestly, although this little guy does have preferences, I believe that if he's thirsty he will drink. Simple enough, right? Last Tuesday I decide to give the theory a try. We had PT and ST in the morning and were staying in from the heat so I felt comfortable to give it a try. We played throughout the afternoon and I offered the honey-bear cup with milk instead of water. For the first few hours, every sip was either spit out or dribbled down his chin. By 4pm, Liam had his Gerber cereal bar snack and wouldn't you know it? He got thirsty, and he drank the milk!!! He drank, and drank, and drank....He drank through dinner and following until we had to refill his cup--yup, a whole 8 ounces...WOW! So since Tuesday, Liam has become a milk drinker-and we couldn't be happier. Today he probably drank about 10-12 ounces-still not quite where he should be, but in just 5 days this is progress!

We have our GI appointment on Monday and will discuss what Liam needs now to get that tube out. Monday also happens to be the 1 yr anniversary of when Liam was taken off of all oral feeds due to possible aspiration and failure to thrive. How about that for timing?!

So today Liam, we raise our milk-filled glasses to you...for you've gone and done it once again!

'Rasta' Liam!

2010-06-18T05:09:00.000-07:00

Nothing like a little music to get the day started...

Music, and of course, lots of smiles!

Liam's 1 year Check-up

2010-06-17T07:10:00.000-07:00

Liam is holding steady on his growth curve; 25% weight, 5-10% height (just a 'lil guy!) Since his 9 month check-up with his pediatrician, he gained 2 lbs, and he is a little over 17 lbs. Liam had a cardiology appointment back in May and was 17 lbs, so no weight gain in about 5 weeks. Since then, he cut two teeth and two more are coming in, and his activity level -swimming, scooting, almost crawling(grrr!), has increased so our Doctor said as long as he isn't losing weight, she's happy. She also said to rev- up the table foods! There had been a question of Liam being allergic to milk protein (blood in his stools) so he was taken off of breast milk last July. Over the last 5 months or so, we have sloooowly introduced dairy and milk products and there have been no signs of an allergy or reaction. Liam is now trying cottage cheese, whole-milk ricotta, he loves grilled cheese and he just started ice cream! He is hesitant to go back to "mushy" consistencies, like yogurt, so we are trying yogurt shakes, freezing it, etc... Basically, he needs to get more calories in so the ones he burns don't effect his weight.

One of the frustrating things is even though he is drinking from his straw cup like a champ-he prefers only water. We have tried his formula, smoothies, juices, whole milk and 2% milk, chocolate syrup flavoring, anything-but he will only really take water. He reaches for it and sucks it down especially when we're outside, so I am confident he is staying hydrated, but it would be great to get some calories in him via drinks. Any ideas of how to get your 1-yr-old to drink something other than water? Any mama's have similar problems and found something that works? Open to any and all suggestions.

Another little piece of good news...our pediatrician wants Liam off that NG tube!!! It's so nice to hear Doctors say those words! We will be seeing Liam's GI in two weeks so we'll get a better idea of a timeline to get off the tube. He receives about 17 ounces or so of formula at night which we can really start cutting down once he takes more milk throughout the day. We are getting there...all of his hardwork will payoff soon.

Liam will be getting his thyroid tested now yearly since often times children with Ds can have thyroid issues. We are scheduling to get his bloodwork done to check his levels, so hopefully all will be fine on that front. So all in all a good visit, just need to work on getting all those good, calorie-filled, nutritious drinks in him, and to continue to stay healthy this summer.

Here's wishing for fun and healthy summers to all of our readers too!

Spreading the Word

2010-06-09T16:17:00.001-07:00

I read a post today about a little boy with down syndrome who was at his pool and an 8-year-old standing in line turned to his friend and said, "That baby is retarded." I can't even begin to fathom how the words "baby" and "retarded" can even be used in the same sentence. Retarded is an ugly word, an unfair word, and certainly a word that should never be used to describe anyone-especially babies who are absolutely defenseless.

I used to worry about such silly, superficial wants/needs of my own, where I would be in 5-10 years, etc... Now I worry about things like people using the word retarded to describe Liam, or children being unkind or cruel to him on the playground just because he is different. It is incredibly disheartening to think about, but I have to allow myself to every once in awhile because unfortunately I know this is something we will have to face in the future.

I know many who read this blog are part of the down syndrome community. For those of you not familiar, I have provided a link below to a site that I have visited, pledged, and believe in now more than ever. It is a campaign to end the "R" word. Please join us in this movement, and be the voices for our children who need to be heard.

I'll end this with a good story. About a year ago, my nephew Brendan was in the car with one of his buddies. Brendan knows a little boy with down syndrome at the beach. When Brendan's buddy asked what having down syndrome meant, Brendan simply said, "He just has down syndrome. He can still do anything anyone can do, it just takes him a little bit longer to learn how to."

So simply said, and very simply, true.

We can spread the word.

A few Birthday pics...

2010-06-04T04:17:00.000-07:00

We got to celebrate last night...

And the best part about being 1? Not only do you get your cake-
and get to eat it too...

You get it BEFORE dinner...because when you're 1, and you go to bed around 8,

Who cares about dinner...

When you can just have desert??

YUM!

Liam's 1st! at OneTrueMedia.com

2010-06-02T11:21:00.001-07:00

Enjoy the show!

Make photo slide shows at www.OneTrueMedia.com

A little luck in our corner

2010-06-01T00:48:00.000-07:00

Have I mentioned how lucky I think we are lately? I say this for many reasons, too many to mention in this blog entry, but I'm sure I've touched on several in the past. The latest reason I believe we are lucky is because I have said for months that when Liam turned 1, his eating would improve. I thought around 1 we'd see a tooth or two (we have), he'd be able to try "people" food (he has) and he'd be using a sippy cup (he is). Simply put...Liam enjoys eating. He has caught on quickly and in the last few weeks he has made great strides. He uses munchkin mesh feeder bags to slurp vegs and fruit from...he has cleaned us out of strawberries-I already bought 3 containers this week;) He chews and swallows bits of grilled cheese, chicken, scrambled eggs, waffles, pancakes, fruit bars, toast, puffs, and other assorted food and treats. Just to clarify, these revelations did not come about easily. We went through a period of about a week or two where Liam pitched a fit when it was mealtime. He arched, spit his food out, cried, and then simply refused ANY baby food. We have learned on our journey that when something isn't working in the eating department, we move on. No need to dwell on it, we try new things to keep a positive and healthy relationship with food, which with a feeding tube is not always easy, but has to be done. It is the only way we have been able to deal with his needs, despite what the books or even some Doctors may say. It's worked for us this far, and we have learned to trust our instincts with Liam-he let's us know when things aren't working.

On to the drinking...I can officially say it...Liam drinks from the honey bear cup!!!! Let me just tell you as parents who haven't seen their baby really drink a bottle or anything since he was only weeks old, the sound of your baby sucking on a straw is one of the best sounds Keith and I have ever heard! He hasn't fully mastered it yet, but he's been slurping up water, some juice, and his vanilla flavored formula from it, and just yesterday he drank the entire bottle of water throughout the day-about 8 ounces! I know, some babies take 30 a day by now...but we are THRILLED with 8 because soon 8 will turn into 9, and 9 will increase to 10 and so forth and so on. We got time, we have learned patience, and best of all we will someday "lose the tube" all together (he still needs the NG for supplemental night feeds) and it will just be a memory, like so many other things that have gone on in Liam's short life. Just memories.

So today I feel lucky...really, really lucky. Taking a sippy cup, gerber cereal bar, and some puffs as a snack for Liam to munch on while we're out running errands is just as exciting for me as when he first started to roll over! These are his own "firsts." And speaking of firsts...we'll have another first to celebrate this week... and this "1" is a biggie!

Looking forward to posting on that later...

My 1st Haircut!

2010-05-26T08:34:00.000-07:00

The Beginning...

Maybe a lollipop will work...

Or the old standby-the binky.

Not so much:(

All Done! And look how handsome:)

My Big boy!

Liam wanted to share...

2010-05-19T13:36:00.000-07:00

(Baby due in late October!)

Yay!

2010-05-16T15:41:00.001-07:00

I finally cut my first tooth! My mom and dad thought I did a couple weeks ago, but that was just a little bump on my gums, and now I know what cutting a tooth really feels like. Even though I have been a little cranky, I am so excited to finally get some choppers!

Oh no...

MAMA!

(My gosh she embarrasses me sometimes!)

First Ride...

2010-05-07T09:55:00.001-07:00

...on the Grand Carousel at Giggleberry Farms! Liam loved it-he smiled, giggled (very appropriately) and just had a blast! What a fun night and so wonderful to see this little boy have SO much fun!

The Summer of Liam...

2010-05-05T10:49:00.000-07:00

(To be shared with his Aunt Robin who is also claiming the title, and deserves it;)

It's been three months since our last visit to Liam's cardiologist. We arrived today and she was so happy to see Liam sitting up on the examining table and giving her his coy little smiles he saves for certain people. Liam weighs 17.1 lbs-awesome for this guy especially considering our alternative NG schedule we have him on and all of the previous eating/gaining weight concerns. His heart looks the same, no better but no worse, and the MV regurgitation is still considered moderate. However, based on images from his echocardiogram he had done, his pressures, and how his murmur sounds, his Doctor is very pleased with how he is doing overall. So pleased, she told us to enjoy our summer and she'll see us in four months...the longest span of time between cardiology appointments we have had to date!

In less than three months, we will hit the anniversary of Liam's OHS. Last summer we were sent home from the hospital after spending 6 days in the CICU with a tiny baby who we knew had special needs. We were trained how to insert NG tubes, run gravity feeds, all the while adjusting to a new baby, pumping round-the-clock, and going on no sleep. Shortly after Liam came home, he went back to the hospital, this time coming home with an electronic feeding pump, a 200 lb liquid oxygen tank, a pulse ox monitor and a nebulizer. About a month later we dealt with a surgery that did not go as we expected, spent weeks in the CICU, and was D/C with 9 medications and a strict warning not to let Liam around germs-or he would likely end up back in the hospital. His surgeon told us to take him home and plump him up so he could have more to work with for his next surgery. His Dr. admitted she thought they would be discussing surgery back in December. With lots of luck, we will make it to his one year anniversary, breeze by it, and just keep moving on...

"Enjoy your summer"

I called Keith after our appointment and told him just that and we both got that giddy, free-feeling kind of laugh. You don't have to tell us twice. The summer of Liam has officially begun, and you can bet we'll be enjoying it!

Facing the Facts...

2010-05-01T04:20:00.000-07:00

So here we are approaching 11 months, and I have finally accepted a fact about our boy that I can't deny anymore. Liam has a mullet. It's true, and I recognize that now. Keith has been telling me for weeks, and my own family have been saying things like, "Get that boy a haircut!" and, "He's going to get so hot with all that hair!" But I just couldn't admit it.

Exhibit A:

There aren't many curls to lessen the load, it's more that Liam is all business in the front, and party in the back. Hey, we all love a good party as much as the next guy, but this just isn't right.

Exhibit B:

So I made the plunge. Liam is getting his first haircut at the end of the month before his 1st birthday. You can bet on a few tears that day. Just not sure they'll be Liam's ;)

But this doesn't change the fact that he still looks so darn cute!

Cookies!!

2010-04-22T08:47:00.000-07:00

My what a difference four months can make!

(6 months)

(Today)

baby-sittin'

2010-04-12T12:44:00.001-07:00

I can do it all by myself!

Liam say Wheee!!!!

2010-04-07T09:57:00.001-07:00

Springtime!

2010-04-05T13:50:00.000-07:00

A busy but very enjoyable couple of weeks....warm-very warm-sunshine to soak in. Playdates, swings, parks, and blankets spread out in the green grass for sweet babies to lie on. Sunblock, strollers, and chubby baby arms sporting short sleeve shirts...Oh how we love the spring!

Liam weighs over 16 lbs, and there have been several occasions when he has finished his food, starts fussing, and wants more! He is beginning to feel-and understand-hunger...and it only took 10 months ;)

Speaking of, that's right...our boy turned 10 months old this weekend!

A little lamb enjoyed his first Easter-and his mama enjoyed getting him dressed in his prepped-up plaid ankle biters (thanks Adrienne) and sweater vest. And maybe some canvas loafers to boot.

And in true "boy" fashion, as the day wore on, we got a little more comfortable....

We hope you enjoyed your Holiday!

A little Leprechaun's Wish

2010-03-17T12:32:00.000-07:00

For a Happy St. Patrick's Day!

Put me in the Zoo!

2010-03-11T13:48:00.000-08:00

After a winter of snowfalls totaling 50+ inches, when it's the beginning of March, sunny and 60 degrees, where better to spend a Monday than at the Zoo?!

Here is the great looking crowd (from left: Michael, Grace, Connor, Wyatt, and Liam) and of course the giraffe in the background...

Thanks to the fun mommies for the great day, and to Aimee for sending pics!

P.S. Liam liked the tigers the best :)

Nine Months Today!

2010-03-03T06:19:00.000-08:00

So this little boy is 9 big months old. Liam is tipping the scales and pushing 16lbs. His Doctors are pleased with his growth and general health at this point, particularly his cardiologist who says his heart is sounding good. So good, she knocked off another medication from his list. When Liam was sent home from the hospital he was on a total of 9 medications. He is now on 3 and by mid-month, he'll be on two. I'd say that's some good progress.

Liam is now receiving one big tube feed late afternoon/dinner time and the rest of his formula through the night by NG tube. This means during the day he gets a break from the tube-and is able to work up an appetite and actually eats a decent breakfast, lunch, and dinner, while sipping on his nuby sippy cup throughout the day and during meals. We thicken his stage 2 baby food with baby cereal to get it nice and thick-the less runny consistency-the easier it is for him to swallow. Liam sees a Speech Therapist through early intervention 1x/ every other week, and we are taking him to an outpatient clinic to see another ST/feeding specialist 1x/wk. We have tried to get into 2 other feeding clinics, but unfortunately our insurance doesn't extend to these facilities. We are in the process of appealing, so we'll see if we have any luck with that. It may sound like we are being aggressive or too intense with the eating and specialists, but with the constant threat of G-tube placement, we feel like we must do whatever we possibly can do to avoid that surgical procedure. On top of that, he will have another surgery at some point down the line that he needs to be big and strong for, so his nutritional needs cannot be taken lightly. It is a hard line to walk, but we are taking baby steps...and going very slow and steady.

Liam's interests these days include; watching, petting, and squealing at Gus, reaching for handles on cabinets and trying to pull on them, flipping pages of his favorite books, still getting up on all fours and really rocking now, little spurts of scooting forwards and backwards, staring at himself in mirrors, giggling while being tickled, and rolling around and pivoting around to reach for whatever toy in particular he wants. He is still working hard to sit up completely on his own and nice and tall-I think it will take a little more time before he's strong enough to sustain it for longer periods.

I think one of the most enjoyable things these days is waking up to our "normal" lives-just enjoying our baby. Taking him to the store without panicing of germs (he can fight a cold now). Bringing Liam to his cousins birthday parties and passing him around to his aunts and uncles, while he watches the older kids play. Meeting daddy at work for lunch as a surprise. Liam being our first baby, our first experience-we didn't know what to expect, so the little things are the ones we have come to appreciate the most.

We know we are blessed, and we are thankful.

Little Mountain Man

2010-03-01T15:37:00.000-08:00

A weekend trip to one of our favorite places, the Rough Cut Lodge, in the heart of the Pennsylvania Grand Canyon!

Liam met his friend Brooklyn, got his first real taste of the mountains, enjoyed dinner out at the Log Cabin Inn, and got lots of attention from his aunties!!

Enjoy the pics (sorry for the bluriness...we tried :)

Look out world...

2010-02-22T10:48:00.000-08:00

I'm up on all fours and starting to rock....things are about to get really interesting....

Hearts full of Love

2010-02-11T16:24:00.000-08:00

"Love is that high-flying feeling that makes you leap out of your bed..."

For all the reasons big and small, from A to V, why we are thankful for the day of love this year...

A-Amazing baby smiles...(see above)
B-Baby Mozart...Liam's favorite DVD and mama's sanity for 1/2 hour, every day
C-Caroline-Liam's cousin who turns 8 on Valentine's Day!
D-Daily routines-finally getting into our groove, Liam's taking naps and feeding times are no longer a battle.
E-Early Intervention-they keep our days and weeks packed with therapy for Liam, but no doubt are the reason why he is doing so well
F-Family & Friends-I've said it before, we are so loved and supported, and wouldn't be where we are today without them!
G-Gus! Liam's favorite furry friend who brightens our days and is a happy part of our lives.
H-Health, Good health, that is. Liam is in good health and by his Doctors accounts, has already proven them wrong (thankfully!)
I-Internet resources-Ds boards, organizations, and blogs that I have found to be helpful throughout the last 8 or 9 months.
J-The journey that we are on, and the lessons it is teaching us day by day.
K-Kalie-Liam's cousin who celebrates her 5th Birthday Valentine's Eve!
L-Little boy clothes...so darn cute (and they can't fight you yet on what they wear ;)
M-Mamo & Mom-Mom Liam's Grand-moms who spoil this baby rotten, and who Liam just adores.
N-The Nose Frida (not intended for those with weak stomachs) however, this contraption has worked wonders for our little guy's tiny nose!
O-Occupational Therapy- to build on Liam's fine motor skills and although at times difficult for Liam, he hangs in there like a champ.
P-Physical Therapy-Liam can make it about 20 minutes before the tears start, but it is doing wonders for his overall strength and coordination.
Q-Quiet-that peaceful quiet during a snowstorm that we have experienced twice this week, and never gets old...
R-Respect-one word that if more people (especially those in public positions) truly understood, there would be less hostility between us.
S-Speech Therapy-soon to start and with lots of hope-a new perspective to help with Liam's eating struggles.
T-Trisomy 21 Program at CHOP and connecting with area resources to assist with meeting Liam's needs.
U-Understanding-and appreciating-our differences. It is what makes the world go round.
V- Valentines day, a reminder that without love in our hearts, life would not be as beautiful...

Happy (and Healthy) Hearts Day Everyone!

"...And love is that last little cuddle and kiss that helps you sleep safe through the night"

Happily ever "after"

2010-02-03T07:33:00.000-08:00

Eight months ago to the day, our sweet baby boy was born. Back then we had no idea what we are in for-all we knew was that Liam arrived safely, and that our lives were forever changed, but I think every parent feels that way right after the birth of their child.

Six months ago tomorrow, Liam underwent his first OHS. When we were preparing for the surgery, I asked some moms who are on the Ds board if they had pictures of their children recovering from surgery. I couldn't grasp my head around it-and I knew myself well enough to know that I needed to be prepared for what Liam would look like. The pictures were tough to look at, but seeing the "before" and "after" shots reassured me that we too would get there.

This is Liam several days post-surgery and his run on ECMO.

And here is Liam today:

I think it's safe to say we made it to our "after"...

Happy 8 months Bubba!!

Growing Up Strong

2010-01-28T15:44:00.000-08:00

So today was a big day for Mr. Liam. Today he officially joined The Down Syndrome Growing Up Study, "Stand up and Be Counted." Liam, along with 580 other children with DS, is participating in revising the down syndrome growth curve charts. The current charts used are 30+ years old and obviously need some updating. Liam will be weighed, measured, and charted every three months, then every six months, and then once a year. We are happy to be part of something that we hope will be a benefit to children with down syndrome and their families now and in the future.

While we were downtown, we had our initial appointment with the trisomy 21 Program at CHOP. These Doctors and specialists that we met with were fantastic! I think Liam got great vibes from them too and really hammed it up! He smiled, babbled, and performed for all of his admirers, and it felt so great to hear them rave about what progress he's making. For all his little body has been through he is showing us how strong he is--as if we ever doubted him for a second ;)

You can check out http://www.chop.edu/service/trisomy-21/home.html to read more about the clinic, find resources, and learn trisomy 21 "tidbits."

Happy feet

2010-01-19T14:51:00.000-08:00

Hey look at my new trick...

I knew these toes would be good for something! Now if I could just get them in my mouth...

Playing Catch Up!

2010-01-12T14:48:00.000-08:00

First I wanted to apologize for the length of time that has been since the last post. No excuses...I guess I just neglected our blog and I will try not to let this happen again!

Liam turned 7 months old and is working VERY hard on sitting up on his own...he can for little bits of time and then usually falls into a forward bend/roll! We have begun using baby signs and we hope that because Liam's speech will likely be delayed, he will be able to work on his verbal skills while being able to communicate with us through signing. Liam is still struggling with his eating and remains dependent on the NG tube. We have decided to try a new feeding clinic with a different philosophy that has come highly recommended by his therapists and several of his doctors. Our hope is that we will learn more effective ways of encouraging Liam to want to eat, and for him to find eating a pleasant experience.

It has been a very trying and frustrating experience not being able to get your baby to eat, something that I am sure I would have just taken for granted if not for our experience. While we are so proud and grateful for Liam's progress and milestones he has reached, his eating issues can be overwhelming. Sometimes I need to re-focus when we hit a rough patch or when things are not seeming to go our way. It can be easy to lose sight of our goals and what he has managed to overcome already. To remind myself of this, all it took was going through some pictures of the last seven months. Here is just a little glimpse of Liam from his very start to the present. Hope you enjoy.

And for Liam reading this someday...You've come a long way baby!

Day 1!

One Month

Two Months

Three Months

Four Months

Five Months

Six Months

Seven months

A Merry Little Christmas

2009-12-28T17:14:00.000-08:00

Here's to a great 2010 and all the happiness it brings....Happy New Year!!

This week, one year ago...

2009-12-21T18:39:00.000-08:00

...was the week that changed our lives. On Christmas Eve one year ago, we received a phone call that my results from a blood test came back with a 1 in 22 chance of our baby having down syndrome. In my heart, that day, I knew that the word "chance" meant nothing. I knew that our baby was that 1 in 22. No words consoled us, no prayers felt strong enough...we knew that our wish for a healthy baby wasn't possible. Our lives became so complicated in an instant, and nothing else felt like it mattered.

This week, this year, is a blessing. Over the last year we have seen the worst, have learned the most, and have received the best. Just yesterday we had Liam in his little santa suit-who would've thought one year ago we would be able to enjoy something so simple as a baby in his santa suit? This year, we will be celebrating Christmas and the New Year with a sense of restored hope-something that we lost last year.

Our warmest wishes for you and your families this Christmas. May you all feel that same hope of this season, this year.