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!

We've Been Busy

Last week was Chloe's appointment with her feeding OT. Tammy was so impressed with Ms. Chloe's oromotor development. She said judging her on her oromotor skills she would never guess that she is tube fed even as much as she is (which is about 40% of her daily intake now - gooooo Chloe!!!!). I was just thrilled to hear all this good news about how Chloe is doing! I can get so frustrated with how far we have to go still that I can sometimes lose sight of how far she has come!

We also had Chloe's IFSP (Individualized Family Service Plan). That's the service planning meeting to determine what services Chloe "needs". This was a big one even though it wasn't her annual because we are moving to a new town this summer and will be getting all new therapists, so we wanted to make sure her current therapists had a chance to make goals for her and that we had a transition plan in place. They used a new assessment tool that focused on her daily routines and how well she meets my expectations for each routine and then how satisfied I am with each routine. I found the tool to be quite useful in directing our goal setting and figuring out what are some things I would like to see change. It clearly gave me a strong voice in determining her goals.

Lately, I've really been having a hard time with Chloe's inability to walk, as the weather is nice and I'm really having trouble with her crawling outside, and it was so nice to have a table full of sympathy at her IFSP. I get tired of hearing "oh, she'll walk". I KNOW she WILL walk, it's just hard that she's not walking now. That may sound harsh, but that's my reality. I know that in many ways those of us who are blessed with a child with Down syndrome get to enjoy having our "babies" longer, but that has it's challenges as well. For me, it's been a long time to have a crawler. Don't get me wrong, please! I LOVE Chloe for who she is and all that she can do. This is just my struggle right now and simply having a group of professionals hear me out and sympathize with me was empowering and validating. So onward and upward - I can stop dwelling on it and turn my focus to helping her reach her goals, as SHE is ready!

Another big piece of our meeting focused on feeding. Since Chloe had the stomach bug again she stopped taking a bottle all together for a few days. I was very discouraged and worried we had hit a wall. But just as I was losing hope, she picked up the pace again and is actually drinking more then she was before! GO CHLOE!!! She takes 18-24 ounces by mouth per day now. I think I need to say it again. . . GO CHLOE!

Last but not least we had her ENT (Ear, Nose and Throat) appointment on monday. A hearing test showed that she had fluid in her ears and although her hearing is "fine" docs don't like to let children with developmental and particularly speech delays suffer from ANY hearing loss whatsoever as that will have an adverse effect on further speech development. So they take this very seriously. Fortunately, few ear infections and little to no hearing loss means we can "wait and see". So no tubes for now!!! Wooooo-hooooo! She'll go again in September for a hearing test followed by an immediate ENT appointment for the most consistent care. Have I mentioned we have the best ENT EVER!!!! :) Dr. Baum ROCKS!

So we've been busy, but a good busy. Chloe's the hardest worker that I know. I've got a video to post soon. Until then. . .smiles :)

Chloe's Amazing First Year

Don't forget to scroll to the bottom of the page and pause the music. Enjoy.

Make video montages at www.OneTrueMedia.com

Spring Pics!

Chloe Peacock

Beardsley Zoo - Bridgeport, CT

Xander and Sadie outside the prairie dog exhibit.

A beautiful peacock.

Chloe enjoying a snack! :)

Chloe looking at a beluga whale atMystic Aquarium.

She was waving frantically at it in the first picture!

Me and Chloe

Me, Chloe and Miles at our new house (oh yeah, I don't think I've posted about that yet! I'll post about that later!!!!)

Chloe at the new house in the backyard.

Happy girl.

Big brother Xander with some "flowers" for Chloe.

The 3 kids in the backyard of the new house.

Hugs for Xander.

Where's Chloe??? Her favorite game!

Enjoying a beautiful day with her big brother!

Xander and Sadie at Xander's first science fair! :)

Proud Mama!!!

Okay, I need to brag about my big kids for a minute. Sorry no pics yet, I'm having troubles with my camera, but I DID take pictures tonight and can hopefully get some uploaded soon.

Anyway, Sadie was terrified tonight at her dance rehearsal and after being sick for 2 days and then getting thrown into a room with about 30 girls all running around it was just too much for my little 4-year-old. So I ended up sitting in with her while she watched the other girls practice their routine. Her teacher came up and invited her to join them for the last chance (no pressure, which I really appreciated), but she again declined and told me she was too scared. So I encouraged her (AKA bribed her with a toy) and she agreed to give it a try. I was sooooo proud of her in front of all those big girls, out there dancing with a smile on her face and her shoulders held high. YOU GO GIRLFRIEND!

Next up was Xander-man at the school's first science fair. He was the only 3rd grader to present and just shined standing there demonstrating her experiment to all his peers and their parents, as well as teachers and the principal. It was so awesome to watch him in action. He even volunteered to present at the end of the fair to the PTA meeting attendees. He exuded confidence and pride as he explained his process to onlookers. I was soooo proud I could barely contain myself.

okay, time to sign off. Chloe just had another vomiting spell. argh. . .

Sick House

Boy, that's almost putting it mildly. To make a long story short, it started Friday and ended. . . well. . . I hope tomorrow, with 3 kids and 3 adults all with the stomach bug. The 3 kids were all sick at the same time! YIKES. MOST of us are feeling better, so now it's just a matter of getting back to full strength. It'll come.

And through it all I couldn't get Sweet Ella Grace out of my mind. Wondering what it was like for her to be sick and how she was feeling. Was she feeling sick yet? What was her mom feeling? I couldn't help but think of them as I held sweet Sadie's hair back as she threw up for the ump-teenth time and cried "I just can't take it anymore". All the while as I comforted her, knowing that she'd be better in a day or two, I couldn't get Ella out of my mind. I want to wisk out there and make it all better. I want them to NOT be dealing with this. But I digress and these negative thoughts aren't helping anyone. It's time to turn on the positive mojo.

A few years back I started a tradition in my family where every night at dinner time we would think of different people who were having struggles in their lives, say their names and maybe even write their names on a candle, then we'd go around the table and tell jokes and laugh until we couldn't laugh anymore. That way while we were thinking of people our positive happy thoughts could span the universe and hopefully reach them. My kids still sit down at the table and say "Let's think of people and do jokes". I think it's time to sit back down at the table together, think of some special people who need some positive energy (like Sweet Ella, wonderful little Jax, and beautiful brave Zoey), and let our laughter heal.

A Birthday Wish: Thoughts and Prayers for Sweet Ella Grace

I was so sad to see today that our Ds blog world has been rocked by another bit of devastating news. Sweet Ella Grace has transitioned to leukemia. So for my birthday (today) I'm asking for thoughts and prayers for Chloe's California "twin". You can visit her blog for more information and some adorable pictures of the beautiful Ella Grace. We love you Ella Grace, Denise and the rest of the family!

Oh My Aching Heart

I just heard the news about sweet Carly. A special life taken far too early. My heart just aches for her family. I can't even begin to imagine their pain. I have been reading the various blogs, tears streaming down my face, trying to find an answer. Earlier this week my cousin lost his first child, a beautiful son, born at 28- weeks. It's so hard to understand sometimes why these things happen. My heart aches for them too.

As I have been reading tonight the common theme I hear is the fragility of our special babes with Ds. I cried as I read about and thought about how fragile their little lives can be. But then my chest grows tight, my eyes dry up, the hair raises on the back of my neck and I think to myself, NO! Chloe is NOT fragile. I cannot think of HER as fragile. Maybe she is, in the scheme of things, but I can't think of her that way. She is my fighter. She is my strength. If SHE's fragile, what does that make me? I have already crept in her room tonight and whispered a special good night. I will worry about every cough, every sniffle, every little thing that doesn't look right, just like I always do. But I refuse to look at her and see her as fragile. I just can't.

HUGS to all my blog friends out there who are reeling in pain and their own fears with the loss of one of our own. LOVE and thoughts and prayers to Carly's family and friends. And special thanks to all of you out there who provide me and Chloe with the strength we need each and every day.

AMAZING BREAK-THROUGH!!!!

So, yesterday Chloe took 26 ounces of her toddler formula by bottle!!!!! Her daily goal is 27 ounces so she was only 1 ounce short and got to skip the whole day AND NIGHT of tube feeds!!!!! This is the first time since she was only a few weeks old that she got to go a whole day without tube feeds! Today she took 19 ounces! I'm so proud of my big girl. She's also starting to cruise around furniture. You go girl! I will post pictures soon - camera is broken so I'm using my old one and the hook up is ALL THE WAY downstairs ;) I know, I should stop being so lazy. haa haa

On another note, we closed on a new house this past Thursday. It's an amazing AMAZING opportunity for me and my family. We bought this beautiful old house in this adorably quaint little New England town with my mother. It has a cute little cottage for my mom and a nice big main house that we can share space in, including a roomy guest suite for my family and friends to come and visit - that's you blog friends!!! (and a place for my brothers to "come home to" from graduate school). I feel so lucky. We need my mom and since losing her husband I think she really needs us too. We can be there for each other and that is wonderful. It's a BIG renovation project, so we won't likely be in for 3 or so months! I'll post pictures soon.

A Special Tribute

Today is a difficult day. For it is the anniversary of the birth of my step-father, who died suddenly 6 months ago. I thought it was the perfect day to honor him. He was a very special man and who always had my and his other children's best interests at heart. Big Sam, also known as Bah-Pah and Grandpa, was a man who loved his wife, his children and his grandchildren VERY much. He spent countless hours with my own kids establishing a bond with them that will carry with them throughout their lives. He was a generous caring man with a wonderful sense of humor. He always loved to make us laugh. I know many MANY lives were touched by him and were effected by his loss. My thoughts are with everyone who feels the pain of his absense, today especially, on his birthday. I love you and miss you big guy and celebrate your memory.