Wednesday, June 30, 2010

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. . .

Monday, June 28, 2010

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???????

Saturday, June 26, 2010

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

video video

Friday, June 25, 2010

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!




Wednesday, June 23, 2010

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.)

Tuesday, June 22, 2010

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!)

Monday, June 14, 2010

More Pics


Chloe reads a book in mommy's program


Coloring at the easel. Nice standing Chloe.













Sadie. :)




Thursday, June 10, 2010

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!!!

Monday, June 7, 2010