Her Face

Thought I should post some pictures of her face since the last post was of the back of her head! LOL These pics were taken by my four year old. Pretty good, huh?

Naptime

How Chloe routinely falls asleep! OUCH.

Pale Feet

Do any of your kids with Ds (or without) get REALLY pale feet? Like NO color at all pale? Chloe will occasionally get these white feet and it's very weird looking. I'm going to email our pedi, but I thought I'd check with my blog friends first. :)

Taking a Stand

Not me, Chloe! She pulled herself to stand ALL BY HERSELF today at the couch. Of course I wasn't there to see it! But she did it for her Nana (my mom) so that's good. Nana was so excited she could hardly contain herself! I'm sure I'll get to see it soon enough and probably over and over and over again ;) LOL

Sleep Study #5

Pre-sleep study - the calm before the storm.


During sleep study, but ALMOST done.


All done and ready to go home!!! :)

Chloe had her 5th sleep study last night/this morning. She was a REAL trooper. She hated getting the stuff all stuck to her and cried as she lay between my legs in the crib (yes, I was in her crib with her!). It took her a good 2 hours to get settled into a comfortable sleep, but once she was good and asleep she pretty much stayed that way! YAY for Chloe. Last sleep study was NOT so pleasant! She was happy to get it all off this morning and get back to her home, her family and her friends! It'll be 2-3 weeks before we get the results, but this was basically a baseline so we don't expect anything startling. We know she has OSA (obstructive sleep apnea), it's just a matter of the degree now that she's older and bigger (18 lbs, by the way!!!!!). She definitely SEEMS better to us and hasn't been on the CPAP since this summer. Fingers crossed that it stays that way!

In Over My Head?

I think I'm in over my head. Not in having a child with special needs, but in having THREE children! I swear, give me two, and it doesn't matter which two, and I do great. I can work them together nicely. But throw in a third and it all goes to hell! I'm hoping it's just the current ages. 9, 4 1/2 and 17 months. If my attention is on the little one and the two big kids are together it's sure to lead to a breakdown (evenutally a breakdown of MY mental status)! So what's the answer? Get rid of one??? But which one??? I'm awfully fond of each of them individually. So I guess that's not the right option. Keep them separate? Man, I TRY, but there always seems to be that time in the day when they're all three together. I just keep trying to tell myself "this too shall pass" and we'll get into to rhythm that keeps me from killing them (just kidding - ummm. . . , yeah, no, I was kidding) Spring will undoubtably help, but that's too far away to count on that. Any advice anyone?????

Baby Steps

Yup, that's what Chloe took today. Literally. She took baby steps. You know those ones that babies take when you hold them up and they "stand" and take those sort-of "fake steps"? The ones where they don't really support their weight, but they bear SOME weight and those little legs move in a walking pattern. That's what she did. She had her leg braces or AFO's on and her big clunky sneakers and I held her up as she "walked" across the room. Now you have to understand, usually when I hold Chloe up she holds her legs up. In fact she does whatever she can NOT to put them down. She usually holds them up at a nice 90 degree angle. But today, after working with her new OT Tammy yesterday on some new weight-bearing exercises, her legs seemed to be "woken up" to this new skill. "NOW we know what to do", they seem to say. I'm excited. You can probably tell. They were the most beautiful baby steps I've ever seen.

First Born

Happy Birthday to my first born, Xander, now 9 years old! It's hard to believe how quickly 9 years can just whiz by. I find myself at a loss for words on this meaningful anniversary of the birth of my first child. Maybe when my head is clearer I can post a little something more about this special young boy. Until then, enjoy a picture of my handsome young man.

Jaxson's Fight

Please send positive thoughts and prayers out for my good blog friends Lacey and her son Jaxson. Jaxson is very sick and needs all our positive energy coming his way. Read about his fight at Jaxson's Fight.

The Evolution of Crawling

CHLOE CRAWLS COMMANDO-STYLE


A MORE IMPROVED COMMANDO


UP ON ALL FOURS!

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. . .