Doing GREAT!

I think I already posted this picture, but I wanted to post it again. :)

Well, I thought I'd better post since Chloe is doing really well right now. She's just starting to show signs of a new cold, but I wanted to post since she has been germ free for a few days now and I'm just so excited. This has been a tough season for colds and viruses, but all in all she's toughed it out just fine.

Chloe had PT today and with very little assistance she climbed up 2 flights of stairs! Go Ms. Chloe!

Feeling Better

Yesterday was a long tough day for little Ms. Chloe. She was either lying on my one of us, sleeping or crying in pain. It was not fun to watch. But today is MUCH better. She's tolerating feeds now and is up and crawling around again. It seems the worst of it is over. Thank goodness.

Watch and Wait

Chloe threw up at 12am and then had diarrhea again at 3:30am. So now we watch and wait. . . She's pretty lethargic this morning. Hasn't peed yet. I'm going to give her her morning feed at a slower rate and watch and wait. . . Hopefully the end is in sight and she'll be feeling better soon!

Ahhh, relief

I'm feeling some relief since I got caught up on posting pictures and videos and the laundry is sorted and ready for attack and the Pixos are finally collected and put away (you'll understand if you have Pixos!). It feels good to get at least a few things done.

Chloe continues to have intestinal upset. She hasn't eaten a single thing all day until now (7pm), has taken 2 naps and has done a lot of lying around and complaining. Not our usual Chloe. She's getting her tube feeds though (THANKS GOODNESS for that!) and is hanging in there, so we're not worried (especially now that she's actually hungry). I'll post again if anything changes.

Videos

Chloe Crawls


Chloe Dances and Crawls

Happy New Year!!

Matching girls bring in the New Year!


Happy New Year Stacey and Xander!


Waiting for the ball.

Sadie as the ball drops and the clock strikes 12:00:00!!!

Handsome Xander as stick boy for the New York Rangers.

Happy boys!

Sweet Chloe outside.

Christmas Pictures - Better Late Then Never

Xander and his snowman.


Decorating the tree.



Sadie.

Decorating the outside of the house.

Chloe and Xander.

Chloe in a Christmas outfit in front of the tree crawling away!

Beautiful Sadie in her new princess dress.

The family (minus Xander) at dad's Christmas Eve party.

Chloe with Aunt Sarah and Uncle Dante.

Touchdown.

Beautiful girl.

Chloe loves her uncle!

Daddy and his girl.

Mommy and her big girl.

Nana and Sarah at dad's Christmas Eve party.

Macy and Sarah.

Cute Chloe opens her presents.

Chloe and Uncle Mont. Time for snuggles.

Macy and Sadie at Xander's Christmas hockey tournament.

Stacey and Chloe at Xander's game.

Xander and his love.

Leaps and Bounds

Well, I'm off work today with Chloe who's had 2 diarrheas this morning and has spit up 2ce and Sadie who also had an "accident" yesterday at school. Better safe then sorry with all that's going around. I don't want to risk exposing anyone else. So, I'm going to try to take some time today and catch up on my blog.

Chloe has been doing so much lately. I'm not even sure where to begin! I have video, which I'll be posting soon, it's just on my "old" computer (I got a new one for Christmas - sooooo exciting) so it probably won't happen today. Chloe turned 17-months yesterday so this seems a good time to do an update anyway.

So let's see, Chloe's health first. She's had a cold off and on for months now, but it never turns into anything, so I look at every day as a constant reminder of how strong she's become and how great she's doing. And how glad I am that she's gotten the RSV vaccine along with the seasonal flu and H1N1 vaccines. It's worth all the pokes! Chloe's sweet friend with Ds and repaired AVSD (same heart condition Chloe has) just got out of the hospital after about 12 days from RSV. We are counting our blessings!!!! (and so glad he's finally back home and doing better!) Chloe's still primarily feeding through her feeding tube. She just isn't too interested in drinking liquids from anything (bottle, cup or straw), but we continue to try and work with her and hopefully one of these days it'll just click. So in the meantime, she eats her solid foods 3-5x a day and gets 2 bolus feeds and 1 continuous feed per day. We assume she's growing since her weight hasn't been checked recently, but she'll go to the doc tomorrow and hopefully he'll plop her on the scale (I'm sure he will). She hasn't changed clothes size so I'm interested to see if she's still gaining. Having diarrhea and spitting up can't be helping! Oh, and I almost forgot to mention that she's getting about 5 teeth right now!!!!! She'll have 8 when it's all said and done. Her four molars and then the 4 front teeth - 2 top and 2 bottom. The could be the reason for the diarrhea, but I'm taking any chances because other kids have it. Her front tooth that's coming in is a jagged sharp dagger! WATCH OUT! Yikes!

Developmentally Chloe has been making some tremendous strides. She is now crawling on all fours perfectly, climbing up the step in our living room with ease, working on going up a few stairs, pulling up to her knees on EVERYTHING, feeding herself with a fork and spoon (with help and with quite a bit of mess!), expanding her babbling sounds to include "mama" :) , signing "more" and making gestures for Itsy-Bitsy Spider and Twinkle Twinkle and Row, Row, Row Your Boat, and pointing to her our noses and then her nose when asked. It's all so very exciting!!!!!

The other kids are doing great too. We put a backyard hockey rink in and Xander is enjoying being able to skate every day. Sadie is learning to skate and that is exciting for her. She's really taken to it right away. Sadie goes to PreK 3 days a week and loves it once she gets there and Xander is enjoying 3rd grade and all that brings (including girlfriends and break-ups and 8-9 year old drama)! Sadie is loving ballet and tap and Xander is busy busy busy with hockey 3-5x per week!!! He's even tried out being goalie for awhile (and discovered it's NOT his favorite thing! LOL)

Me, I'm hanging in there. Doing better then I've been doing and able to enjoy my kids and all that is going so well for them. I miss my step-dad every day and still find myself in disbelief of the whole thing (we lost him suddenly back in October). Our finances are still a mess and our living situation remains up in the air. I don't blog very much because in general I'm overwhelmed and can't find the time or the mental energy. But like I said, I'm starting to feel better so hopefully I'll be on the upswing now. And finding the joys in my children's lives keeps a smile on my face and gets me through the days. I hope to be able to get back to blogging regularly. I miss it.

Thanks to everyone for your continued support.

Proud Mama

That's my boy holding the first place Mite B trophy after winning a Christmas tournament in Rhode Island last weekend. This is Xander's first tournament win so he was thoroughly excited!!!! He got to spend today at the Ranger's game at Madison Square Garden as the "Stick Kid" after Stacey was randomly selected for 2 tickets and the "Stick Kid" experience from Blue Shirts United fan club. Hopefully I'll have a pic or two to post after they return. :) It's been quite a week for my little man (8 years old) and my big man too. Merry Christmas and Happy New Years boys!

Merry Christmas

To all our friends and family we want to wish you a very Merry Christmas. Chloe's enjoying a nice little siesta while we take a break from present opening (Santa first, then family stuff later - these blended families are complicated). :) Hope everyone is enjoying the holiday season and getting time with special loved ones. Very merry. . .

For all the heart moms, this hits the nail on the head!

You passed me in the shopping mall...(You read my faded tee)
You tapped me on the shoulder...Then asked...`"What's a CHD?"
I could quote terminology...... There's stats that I could give...
But I would rather share with you...A mother's perspective.
What is it like to have a child with a CHD?
It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician...
(She knows me by name...I'm a mom on a mission)
It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.
And no...we'll never be the same...It's changed our family...
This is what we face each day...This is...a CHD

Thanks to Samantha Lloyd for sharing this!

So Lucky

A good friend of mine is fostering a sweet little girl who is eight months old and I was having one of those moments as she crawled circles around my 16-month-old Chloe. She easily pulls up to stand and gets around with such ease. I was looking at the little girl with a pang in my heart for Chloe, who struggles to stand and although gets around quite well, doesn't have the ease that typical children do. With some hestitation, I mentioned my feelings to my friend. "Chloe's the lucky one" she said. "She gets to be with her family who loves her very much and cares for her". So true. Chloe IS the lucky one. She may have troubles but she DOES have a family that loves her so very much and IS there with her every day. She has a family that would die for her and no one is here telling us we can't be together. I am so thankful to my friend for putting it back into perspective for me. I hope I will not waste another moment feeling sorry for Ms. Chloe, as she is amazing just the way she is and together our family is complete!

Choo Choo - Train Pics!

All hooked up to her feed and cozy in her seat on the train! All ready to go!


Xander with his new IPod Nano.


Me, Chloe and Xander, all so happy we're on the train and not in the car!

Me and mom (AKA "Nana")

Chloe getting some "crawling time" on the seat.

Xander passed out on our luggage listening to his IPod!

Uncle Phil and Brooke meeting us for dinner in the train station!

Great Nana and Chloe share a very special moment.

The whole gang (with Xander behind the camera) at the Smithsonian National Museum of Natural History.

Sick again. (but still darn cute)

Daddy and Sadie comfy on the train home.

Chloe fast asleep. She slept about 3 hours on the way home. Woohoo! :)

So Far So Good

So Chloe has pink eye and a bad cold, but we THINK her ear infection has cleared. Hard for the doc to know for sure since he couldn't actually see her ear drums. He said to keep an eye on her and if she starts showing signs of being uncomfortable or sicker then we'll go to the ENT to have him take a look. She slept from 7:30pm til 10am, albiet restlessly, so I'd say she's definitely fighting something, but she's been a happy little girl all day, playing with no nap. So I'm not worried. Just another annoying cold I think.

Sick Again

Argh! She's sick again! We were up off and on all night with her tossing and turning and occasionally crying. NOT like her at all - she's a GREAT sleeper. We gave her Motrin at around 1 and at some point last night she started running a fever again. I was anticipating a bad trip on the train today, but then she after some Tylenol on top of the Motrin, she perked up. We've been up since some time after 5, but she's been happy since about 6:20am. Hopefully she'll be able to sleep on the train. It's a 5 1/2 hour ride so I'm hoping for the best. The trip down was amazing, so I'm hoping for a repeat, but I'm cautiously optimistic. Wish us luck! ;)

Down in VA

Well, here we are down in VA for the weekend. It was a successful train ride down. We got GREAT seats at the end of the train with plenty of room for Chloe's stroller and for me to maneuver around for her tube feeding. (thank goodness for that!) She slept for a bit, but spent most of the time awake wanting to crawl around on the floor. We kept her up on the seat and gave her a small little area on the seat to play around on. All 3 kids did great though and I got some cute pictures that I can't wait to share.

Xander was adorable today driving around DC seeing the sights. "This is the best vacation of my life!" he exclaimed at one point. And after driving through the snowy streets of DC we spent some time in the Smithsonian National Museum of Natural History. Xander was totally in his glory today. My 92 year old Nana joined us, so it was a very special day for us. I got a cute picture of her holding Chloe's hand this morning. Like I said, I've got some great pics to post when I get home.

It's hard to travel with a kiddo with a g-tube. I forget about the demands of her schedule and routine when we're not at home. It's so hard to be out and about and get her feeds in. But we're doing the best we can and we'll be heading back on the train tomorrow so it's only a few days of discombobulation. I don't know how my friends with more complicated situations do it! I'm always impressed by them (you know who you are - wink wink). :)

We're thinking of dear Sweet Ella Grace and her family as they wait for test results. Say a prayer for them.

Getting Better

Chloe's cold / ear infection has gotten much MUCH better. She still has a nasty morning cough, but her eyes and nose have cleared up and she doesn't seem to be so bothered by her ear. Phew! ;)

Therapy is going well. She has started doing some "floor transitions" (going from belly to all fours to sitting) with her braces on. That's a HUGE step. She's only been using her braces for brief periods of standing , but now she can start to wear them more often and eventually when she can pull herself up, she'll wear them most of the day so she can walk. I know, slow down, she's got a WAYS to go before walking, but obviously that's the ultimate goal.

Her g-tube is leaking a lot lately and I think it might be time for a bigger size. We go to her pulmonologist tomorrow for a routine appt and I'm hoping surgery can squeeze her in too to look at her g-tube. A leaky g-tube is no fun. ewwww! I'm also scheduled to talk to a nutritionist on Thursday so we can make a plan to maybe, hopefully, someday start to wean her from the g-tube. I'm looking forward to working with her.

Well, Stacey and I are off to a Rangers hockey game tonight with the two older kids. We couldn't be MORE excited. Stacey (my hubby) said trying to sleep last night was like that Disney commercial - "I'm too excited to sleep!". It's Rangers/Penguins and Stacey is a huge Rangers fan and Xander is a huge Penguins fan. I'm a Rangers fan too, but not quite as big as Stacey. No matter what it's a night out with the kids so I'm thoroughly excited. :)

Thank you

Well, it seems as though a blog of thanks is appropriate at this time. So here goes. my top 10 things I'm thankful for, in NO particular order. . .

I am thankful for. . .
*my blog friends who support me no matter what is going on
*my family (that is really about 20 thanks in and of itself, but for breivity sake, I thought I'd just sum it up into one)
*Chloe's health as of late
*my friends who still love me even though I've been an anti-social depressive lately
*all the "things" in my life that I am lucky enough to have
*despite our financial hardships still being able to put food on the table
*having a child with Down syndrome - I'm not thankful that Chloe has Down syndrome, but that I got to have a child with Down syndrome, because Chloe is very special, in part because of that extra chromosome. Does that make sense?
*the sun and beautiful days
*having the most perfect husband in the world for me. He makes me feel special and important and supports me in a way no one else could.
*all the special relationships in my life, in particular the relationships I have with my mother and my kids (for now anyway, I know in the next few years they will probably hate me LOL)

okay, that's 10. I could go on, but who wants to read about all the things I can think of to be thankful for! haa haa. I bet you if I sat down and put my mind to it, I'd come up with 100's. Ranging from life to the beach to snow to flowers to advances in medical technology. Maybe it would be a good activity for me to do. I could use some good positive thinking for myself! I invite you to join me and see how many you can come up with. I plan to print and post my in my bathroom to start my day with.

Love to all and Happy Thanksgiving!

Chloe update

Looks like Chloe's got a good ol' ear infection. Lungs sound good. And once again she's handling this cold like a champ. None of the scary stuff we'd gotten so used to. :) Thank goodness.

Chloe's Cold

Well, early this morning (3am) Chloe spiked a fever of 104.5. She was breathing very rapidly, but Motrin brought her fever down and that seemed to help her whole system. she's got a cough, but is still in pretty good spirits. We're off to the pedi at 2:45 to have her checked out. I don't expect anything dramatic, aside from it's an upper respiratory infection. . . we'll see and I'll keep you posted. And hopefully we'll all get some sleep tonight!!!!

Bad cold

Well, now she's got a cold with stuff coming out of everywhere. She's remaining in pretty good spirits though and so far so good with breathing! Phew.

As for the shiner below, I guess I may have purposefully omitted the "how" because I banged her head on my knee when I was holding her and went to sit down!!! Talk about feeling terrible! Now that she's mobile she's got all kinds of bumps and bruises!

Her first shiner!

Our Little Rock Stars

(you may need to pause the music at the bottom of the page before viewing, if music plays automatically when you're on the blog)



Chloe rocks out to some Nickelback. Check on the air guitar in the middle ;)



Sadie, our now 4-year-old, sings us an original demonstrating her 3-year-old angst.

Life is good!

Keeping Busy!

This is how Chloe is keeping busy these days! Look out, we're in for it!

A Little Halloween Puppy

Look at this cute puppy I found wandering the streets of Hamden. ;)

A Quick Fix

Well, turns out that soy milk only has 100 calories per 8 ounces whereas the formula she was on before switching at the magic age 1 was 100 calories per 5 ounces. BIG DIFFERENCE, right? You bet! Soooo, we have her on toddler soy formula and after only a week she's already putting the weight back on. AND she's got more energy then she knows what to do with. She's scootching all over the place and doesn't want to sleep because she's too busy moving! Glad that was a nice quick easy fix!