Happy Birthday to my very own Angel

Today was a very special day. Chloe turned two today. I made a little montage of her day that includes a few of her newest accomplishments. I just missed her signing! Oh well. Hope you enjoy! But first. . .

Chloe at birth - 5lbs 11oz


Chloe, 1 year old, at her first birthday party.

Make an on-line slide show at www.OneTrueMedia.com

Crisis Averted

Quick update - it appears as though the bleeding after I put the g-tube in yesterday was just irritation in the tract and NOT from a rupture of any kind. PHEW!

A Wee Bit of Drama

So, Chloe was enjoying some nice naked time after her bath. She was sitting in her IKEA egg chair and I thought that would be the perfect time to hook up her extention tube to her Mic-Key button (AKA her g-tube) and give her her meds. Even though we don't use the tube for feedings I still use it to give her meds because she doesn't like them and I figure I'll use it while it's still there. Anywho, she doesn't like taking her meds no matter what, so she grabbed her extention tube and gave it a good ol' YANK! And "POP!" out came her g-tube. After yelling for my husband and realizing he was beyond earshot, I laid her down on the floor, held her in place with my foot (since her stomach contents were sloshing out as she moved and I needed, for my own sanity to keep her still!) and phished around for the right syringe so I could deflate her g-tube balloon and relace it in the hole. I got myself organized and calm and simply inserted it back in the hole. But wouldn't ya know it, out slurped some blood. I wiped it off and checked her tube for blood and didn't find anymore. I handed her over to daddy and after debating with my mom decided to call her surgeon just to be sure. She said that it is possible for the tract to bleed and that the story seemed to be a positive one, but that if she showed ANY signs of discomfort or change in behavior that we not hesitate from bringing her in to the ER. I think she's fine, but I can't help wondering if I punctured something when I stuck the tube back in. How terrible would I feel???? Let's hope she just irritated the tract when she RIPPED out her tube (or I irritated it when I put it in). Only time will tell. . . wish us luck!

Moving Day Pics

All loaded up and ready to move! I left ahead of the movers to get the kids out of the house so daddy could finish packing. We had a full car load - me, my cousin Jonny, the 3 kids, the dog and the cat!!!


Ready for the 20 minute drive to our new house!



Cousin Jonny, who by the way, ROCKS!

The moving truck getting loaded after we left.

Bye bye house. Bye bye Hamden. We love you and all our friends!

The PACKED truck at the new house! It was quite a feat getting the stuff down off the top!

Chloe NOT enjoying being trapped in the stroller.

The other truck! We had 2 loads that took 10 hours to load, move and unload. Phew! It was a long day!

Back Online!

It's been a crazy week and with no computer access, I've felt completely shut off from the world. Fortunately, I'm back online and ready to get reconnected. The move went fine. It took what seemed like F-O-R-E-V-E-R to unload the truck. My poor mom was off trying to juggle Chloe (yes, I said "juggle" because if you know Chloe at all she is ALL OVER the place and keeping track of her is like juggling!) and my awesome rockin' cousin Jonny who flew out from MN to help had the two big kids. The cat was wondering aimlessly in the woods and the dog was crated in my mom's cottage kitchen (we moved onto a property that has a main house for us and a cottage for my mom). I was a little stressed trying to keep everything straight. Oh and let's not forget my husband was in and out trying to replace the white dryer that was supposed to be blue - all while we're trying to move. But despite it all and the 10 hours it took to load, move and unload, we managed to get all moved in with little to no incidents. And I hate to admit it, but all those people who said "aw, you'll have fun setting up your new house" were actually right, it IS kinda fun ;)

As for the kids, they're all adjusting GREAT! I think the anticipation was harder then the actual move. Chloe's thrilled with all her new found space. And Xander and Sadie are just having fun exploring the new surroundings. The cat and the dog have even settled some. I think we're really going to like it here. :) Can't wait to post some pics!

Can't sign off without asking for prayers for sweet Jax and his family. Jax was taken by ambulance and is in the PICU. They need all our positive thoughts sent their way.

Moving Day 1 and other Grand Accomplishments

Well, the long awaited day is finally here. Sort of, anyway. Since we bought the house back in April and have been renovating we've slowly moved stuff over to the house into the basement. My mom's stuff has also gone down there and will be going up into the house. So today we move the stuff up from the basement and tomorrow is the final BIG move of all our stuff from one house to the other. I'll try to post pics in a few days, but you can assume I'll be out of touch briefly. So much to do, like installing gates around the stairs and baby proofing the house (why do they call it that? It's really toddler proofing. . . anyway. . .)

So a quick Chloe update. She's been trying to stand from the bear crawl position and has discovered she gets LOTS of attention when she does it! So as you can imagine she does it a LOT. She's also practicing walking while holding onto my fingers. Once we're settled I'll be sure to snap some video to post. She also continues to do GRRRREAT with the bottle and hasn't used her tube for 1 MONTH TODAY. woot! She contiues to astound and amaze me.

Chloe works HARD during therapy

Here is a short video of Chloe working very hard to put on her sock.

Make an on-line slide show at www.OneTrueMedia.com

Random Post

Chloe's version of a yogurt facial!


Here's what Chloe does when mommy is on the computer! Nothing like shredding a paper towel to keep you busy!

Playing with Cars

I just love these pics. Not that I'm biased at all ;)

She Stood Up!!!!

Wish I had a photo or video, but words will have to do. We were at my mom's waiting out a storm when Chloe got up in her bear crawl position and then pushed up to stand!!!!! I screamed with excitement, at which point she plopped down on her bottom and crawled away! LOL She spent the rest of the night practicing pulling up to stand on furniture and letting go for brief moments. It was so very exciting!!! I think she really wants to stand. She's also started walking while we hold her 2 hands. This is another HUGE accomplishment. It just amazes me how much progress she has continued to make lately. Go Chloe. Our little kiddos with Ds just work so hard that when they reach their (OUR) goals it is so very exciting. (As I sit here typing I can hear 9-year-old big brother Xander "working" with her to stand. So cute. Ut oh, now he's doing the wheel barrow with her. Maybe it's time I intervene!)

Belated Birthday Wishes

Sadie and mommy in the very spot where she was bor 5 years ago!!!

Five years ago this past Wednesday I gave birth to my middle baby, Sadie. It was an absolute dream-filled day, from the breaking of my water and first contraction, to the cutting of her cord, all while surrounded by family in the comforts of my own home. Her birthday was a little bittersweet as we pack up the house and say good-bye to an amazing chapter in our lives. A chapter that has included the miraculous in-home water birth of my daughter. Of my three kids, that was my only homebirth and for that birth it was the perfect place to be. We will always cherish our memories.

Above are some pics and below a video from last Wednesday as we celebrated our very special day!

Back up and Running

Chloe enjoying a bottle with her sister Sadie. Notice she is HOLDING IT HERSELF!!!!! :)

Well, I did end up losing everything on my computer, so now I'm in the process of trying to recreate everything. What a drag. In the meantime, Chloe continues to do GREAT. I've got some updating to do, but I don't have time right now, so I thought I'd just post a pic until I get a chance to do some updating.

Computer Crash! :(

BAD NEWS! My computer crashed. So I'm posting on my hubs work computer while I have a chance. So that means I won't be posting pics and videos for awhile and maybe not even regular posts until we get this resolved. I've only had the computer for less than a year!!!! boo hoo! WISH ME LUCK that I haven't lost everything on it, especially my pics. I hadn't backed them up yet. I still have them on my memory cards, but who knows where they are!

Dinner Together

Mommy and her kids! Chloe, Xander and Sadie


Chloe loving life!!


Xander, Amy, Penny (AKA Nana) and Sadie

Stacey and Amy (a RARE picture by themselves!)

Sadie with Stacey (daddy) and Amy (mommy)

Oops. Forgot to mention. . .

Don't ask me how, but SOME HOW I forgot to mention the most important part of our doctor visit with the endocrinologist. No, not her lab results. And no, not the way the intern asked in her pensive voice if we had seen the cardiologist recently after listening to Chloe's heart (DON'T do that to me lady!). No, not that we don't have to come back for a whole other 7 months! The most important thing that I forgot to mention was the way Chloe captivated the ENTIRE packed waiting room while we waited for our appointment.

As we sat in the perfectly quiet waiting room Chloe began to "speak" and wave her hands the way many children with Down syndrome seem to do. I don't know what it is, but I see so many characteristics in her movements that I have seen in so many other children with Down syndrome. That FACINATES me. Truly. What is it about that one extra chromosome that causes things like movement to be so similar. Have I mentioned I'm an early interventionist? So yes, these things particularly facinate me. Anyway, there I was, sitting in this QUIET room thinking to myself, "oh, not now Chloe". I didn't WANT everyone looking at us and smiling. At this age we rarely get weird glances. More adoring smiles. I just wasn't in the mood to be a part of what was about to become the center of attention. Then the magic happens and I don't know what it is exactly, but Chloe had not only me smiling away and forgetting about my worries (stupid selfish worries), but even the woman sitting across from me with the type of scowl that left lines in her face. I mean how can you NOT join in when you see that kind of innocence and pure joy just sitting there in front of you talking jibberish to everyone there and laughing at her own silliness. I defy you to resist it.

Follow-up Endocrine Appointment

"Hi Chloe". This is one of Chloe's favorite places to be when we're in the kitchen and she's gated OUT! She stands at the gate, talks to us and waves. What a cutie pie.

Chloe had her endocrine appointment today and a fairly harmless blood draw (she didn't like it, but it was quick and she only cried for a couple of seconds! Go Chloe!). She looks great so now we just wait for her bloodwork to determine if we keep her synthroid dose the same or change it. Pretty boring stuff. We'll take boring.

Time to wake the princess.

Happy Fourth of July

Chloe watching and enjoying fireworks with her daddy. Sorry the picture quality is so poor.

Chloe Eating!

Woooo Hooooo!

I couldn't think of any words to describe yesterday's fabulous news! Our pediatrician has given us the okay to stop using the g-tube and allow Chloe to eat and drink what she wants! We see him in a week and a half (and saw him yesterday) so we can give it a shot for that amount of time and see how it goes. Of course if she's really not eating (doubt that'll happen, but it could) I can just supplement her with toddler formula through her tube at night. But I think she's ready and I KNOW I'm ready, so we're going to GO FOR IT! Like I said, woooooo hooooooo!

In addition to trying to get off the tube, I packed away her suction and CPAP machines because she doesn't need them anymore. That was also a momentous occasion. I'm just amazed by how far she's come. Some prayers were definitely answered!

And finally, today was my last day working for awhile. I was running a toddler program in my lower level, but found it to be too much with all of Chloe's care. With my middle one starting 1/2 day kindergarten in the fall, Chloe's therapies and appointments and our move it just made sense for me to take a break. I'm HOPING to be off until next fall, but we'll see. I'll do what I can. Seems like things are falling into place. It's been a LONG time coming. . .

So Much for That

So much for my big triumpant return. . . my computer is now down in the basement in an effort to make our house appear more "showable". So although I can still access, my time will be much more limited (I guess that's probably a good thing, if you're one of my immediate family members anyway). So I'll do my best to keep up with posts, but as we spend this next month packing away like mad, it can't be my priority.

Chloe is currently playing with Sadie laughing hysterically at Sadie's antics. I know, I know, go video tape, but as soon as I get over there it's sure to end! Her newest trick? Giving me kisses! How much am I LOVING that???????

Pictures

Sadie, Xander and daddy in the cockpit of Coast Guard helicopter at the New England Air Museum on Father's Day for Open Cockpit Day.


Sweet Chloe.


Cute baby feet.

Chloe Videos

Moving Day

Our new house. It's an old house from 1910. It was in bad shape so we're having to have some work done before we move in.

My mom's cottage set adjacent to our house.

So it was moving day for my mom. We're moving to a property that has a main house for my family and a cute little cottage for my recently widowed mother. So we planned out our day, with my working the morning, then joining my mom at the new house after I put Chloe down for her nap and the sitter arriving to take over. But unfortunately as soon as I pulled out of my driveway I KNEW something was wrong. I got about 1/2 a block when I realized I had a flat tire, so I turned around and returned home. We called AAA and I packed OUR house while I waited the 45 minutes for the tow truck to arrive. Long story short, he couldn't change my tire, re-inflated it for me and sent me to Town Fair Tire, who couldn't fit me in until tomorrow morning. So I returned home and used my sitter for packing. I missed out on the whole moving day! :( But there's still plenty to do so I'm loading up on caffeine and heading out to my mom's new pad to help her settle in for the night. Lucky for us a tornado just missed us. Same town, different area. Phew!

Getting Back in the Game

Well, here is my triumphant return to blogging (LOL - how's that for dramatic?) Anyway, not that I haven't been posting pics, but I've had very little to say. Or very little that I knew how to say "appropriately". For those of you that know me, to be at a loss for words is momumental! I usually have plenty to say. But at risk of making my blog a bitch site, I've gone with the old adtage if you don't have anything nice to say, don't say anything at all. Now that's not quite accurate, but I didn't want to be all doom and gloom and oh woa is me, because that's how I was feeling a lot of the time. But feeling a little reminicent of High School Musical, I'm going to get my head in the game. (yes, I watch FAR too much preteen television!)

Anyway, it's been a TOUGH few years. For those of you who have been following along or who have watched the 1 year video of Chloe's life, you'll know what I mean. But you might be wondering what's been so tough about the 2nd year, because truth is, Chloe's just done better and better. Well, I have to confide in you, my dear followers, that after our traumatic first year with Chloe I really crashed. And I mean crashed hard. We're talking post-traumatic stress. It's taken me a full year to recover from that difficult year. A full year to learn how to live without the constant flow of adrenaline rushing through my body as I feared constantly for my daughter's life. FINALLY I can look at that smile of hers and soak it in, instead of wondering what lies ahead of us. I can listen to her laughter filling my soul and not fear that later today she might be choking on her own mucus. I can roll around on the floor with her and toss her up into the air and not worry that I'm going to break her (okay, I have to be careful not to squish her or drop her, but that's all NORMAL!) Don't get me wrong. I've still got a ways to go. But I finally feel that I can and WILL make it through this okay. That I am one of the lucky ones. Not ONLY was I given the gift of a child with Down syndrome (and believe me, I truly think it's a gift), but I have also been given the gift of being in a place where I can enjoy her for who she is without all the baggage of wondering if she will "survive". Speaking of gifts, (sorry I need to go off on a tangent), but it's so hard for me to even remember that faithful day when we found out we would have a child with Down syndrome. The heartbreak was just overwhelming. I look back on that and find it so hard to believe. How did we NOT KNOW what a gift she would be? How 100% perfect she would be. That we would love every single solitary cell that lived in her body. That she would not only change OUR lives for the better, but every single person in her path. How did we not know all that? It's hard to imagine that we ever grieved that she was not going to be anything other than who she is.

Sorry, I digress. Anyway, I guess the point of my post, is that I think I'm back. Healthy enough mentally to write again. To share with you our world while we dance through the tulips (and for those of you not familiar with the poem, there is a famous poem written by Emily Perl Kingsley "Welcome to Holland" where she describes having a child with special needs similar to that of planning a trip to Italy, but ending up in Holland. How disappointed you are when you learn you're in Holland, but then, if you let yourself, you find that Holland is plenty beautiful in it's own right. Holland is known for it's tulips, so I have titled my blog "Dancing Through the Tulips" because we, as a family, are learning the many joys (with plenty of stumbles) of having unintentially landed in Holland.)

A Poor Excuse for a Blogger

Yup, that's me. A poor excuse. I often ask myself why I don't blog that much anymore. It's certainly not that I don't have that much going on because I do - getting ready to move, putting our house on the market while taking care of three young kids, packing, finishing up work, taking care of Chloe, working with her feeding routine and therapies and appointments. . . I have plenty to talk about. But I guess a big part of it is that many of those things are so very personal and although I always thought I could just write about anything, I have found that when it comes to aspects of my life that may affect others, it's not always my place to talk about openly and freely. There is so much involved in our move since my mother is moving in with us and selling the house my brothers grew up in and that all our family gatherings have taken place. There are many emotions that I don't dare even attempt to describe in words. The loss of my step-father last fall has left us all lost in our own ways, searching for how to go about life without him. I have been reading posts from Carly's mom and understanding her frustration when people say things like "it'll get easier". I don't understand that, at least not now, HOW it can get easier when the longer he's gone the more I miss him. (not that I mean to compare the loss of a child to the loss of a parent). There is an emptiness in my heart that cannot and will not ever be filled. Ever. Our moving is laced with complicating factors surrounding his loss. Which often leaves me at a loss for words. I love my step-brothers and sisters and want to take away their pain. But unfortunately life doesn't work like that. I guess we all have to find our own way.

I'm going to do my best to return to blogging, whether anyone is out there reading or not, because it is important to me. It is important FOR me. And to those of you who are out there listening, thank you. (don't worry, I'll keep the pictures and videos coming too!)

More Pics

Chloe reads a book in mommy's program


Coloring at the easel. Nice standing Chloe.

Sadie. :)

Some Pics

Sadie at her dance dress rehearsal. Yup, she's an elephant!


Chloe on her riding toy pushing herself backwards, workin' those muscles!


Xander and mommy.


Memorial Day Parade - daddy, Chloe, Sadie and Xander.


Chloe enjoying the parade!!!

Happy Belated Memorial Day

What could be better then a parade with clapping, dancing and waving!!!!

A Nice Surprise!