Like Magic

Chloe had her endocrinology appointment the other day. That’s the one where we talk about her thyroid – it’s really no big deal. Upon arrival in the quiet waiting room, it was clear Chloe was going to leave her mark. Waving, smiling and saying “hi”, the waiters casually raised their heads to catch a glimpse of the little noise maker. After checking in, we settled in for a long wait, me in a chair and her in the stroller. She was restless and wasn’t thrilled with having to wait, so I pulled out the ONLY toy I had with me, a dive fish for the pool (what can I say, you’d think with 3 kids I’d be a little more prepared). I proceeded to kiss her with the fish and she took it swimming it near me and making adorable cute sounds (okay, I’m a little biased). She soon became bored with this game and chucked the fish onto the floor. A sweet 14-year-old boy then retrieved the fish, much to her delight, and returned it to her. Ah ha! A new game. For probably 15 minutes she threw the fish on the floor and this amazing boy fetched it for her. Before I knew it the whole room, young and old with heads buried in magazines or phones, or their own conversations, was engaged not only with her, but with each other. Smiling, laughing, participating in the game. It was like magic. A magic I know other parents of kids with Down syndrome know all too well. Not to say all babies and toddlers aren’t cute, but there is SOMETHING about kids with Down syndrome that just tends to pull them in. . . like magic.

POOP!

POOP! and MORE POOP! Yup, that's what we're dealing with here. LOTS of poop. Sorry to be so crude, but that's been my life since Chloe's eye surgery last Tuesday. Don't get me wrong, her recovery is going GREAT! But coincidentally she came down with an intestinal bug the same day. So she's been having 5-10 diarrhea's a day and has a nice bumpy rash all over her legs and arms, but has NOT had a fever and continues to eat, drink and most importantly, pee. The doc said he was "pleased" with her "story". Not of course that she's sick, but how well she's managing it. She's a trooper. Let's just hope it doesn't last the 2 weeks the doc said it could! I'm more then sick of changing diapers, clothes and doing laundry!!!!! It's exhausting, not to mention I'm feeling a little bit of cabin fever.

I'll try to post some pics and a more cheerful update soon. :)

Continued Recovery and a Bug?

Chloe's eye surgery recovery seems to be progressing positively. We will go to her post-op appointment to get the official "read" on the success of the surgery on Tuesday. Her eyes look good to me! They're still pinkish-red in the corners and under the bottom lids, but they don't seem to be turning in anymore. yay! Despite how great she's doing with her recovery, she is having diarrhea again and a rash on her legs and now her arms. Some friends have suggested maybe it's Fifths Disease, but I don't want to bother the doc on the weekend, when she's generally fine. I'll call on Monday to touch base, but I'm assuming there is nothing we can do but wait this out. I'm just sick of changing complete blow-out messes (sorry for the graphic)! But she's eating and drinking and playing like everything is usual. More a nuisance than anything else.

Okay, just to prove to you how good she's feeling I've included a video below. Enjoy.

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Surgery Sucess!!!

Our day in pictures. . .

Happy Valentine's Day

Adventures in Chloe

Not feeling very good. . .

But not bad enough not to smile! :)

So it's been a busy day in Chloe-land. She's had a stomach bug since Sunday and it continues on today. It's honestly not too bad, just very messy diapers. As they say in the commercial, "what happens in diapers should stay in diapers!" This has NOT been the case (ewwwww). So there's been lots of laundry for mama! She's otherwise fine - no fever, no vomiting and before today, her appetite's been fine.

I got the call for her surgery today. Next Tuesday, February 15th. It'll be at the surgery center at our local hospital. I spent the day getting all our ducks in a row, so let's hope her belly cooperates and heals in time for surgery!!!! We'll take some positive mojo, thoughts and prayers focused on her recovering in time for surgery.

As if our day wasn't busy enough, while I was on the phone making arrangements for her surgery Chloe fell down (not even doing one of her stunts, I actually think she just tripped and fell!!!!) and BIT her tongue. We're talking massive blood and a major chomp! I think I handle these things pretty well usually, but this had me pretty shaken. It was lots of blood and raw meat. (double ewwww)

So it's been quite a day in the Adventures of Chloe. Let's hope tomorrow is nice and quiet and the rest of the week continues on that way (quiet, NOT like today). Stay tuned. . .

Circus Stunts and Waiting (Not So) Patiently

So I thought I'd start out this post sharing you a little bit of Chloe's circus act! LOL Please ignore the incessant nagging of my son, and just for the record, we have since moved the table from behind the couch, thus thwarting her gymnastic-efforts. Someone suggested I enroll her in an official organized gymnastics class, at which point I chucked to myself! If you know anything about Chloe, you'll know she does things when SHE wants to do them. I can't even imagine her in an organized class. Ha ha! I might give it a try when she's a little bit older, but for now, she'll enjoying jumping and rolling on couch cushions!

Now for the serious stuff. No word on the eye surgery front. I did get a nice long message from the doc on Friday, saying, without saying, that he was frustrated with their decision and that he doesn't expect that she'll end up spending the night anyway. It was very aggravating to hear his frustration too, but it is what it is. Either way, I'll be happy to have it in the surgery center at the hospital because it's much closer to home and a place we are very familiar with. So I'll repost when we have a date. Hopefully I'll hear something tomorrow (I expected to hear something today, but didn't ARGH). I need to get my supports in place! Wish us luck!!!! ;)

Grrrr, Grrrr and more GRRRRRRRR!!!!!!

So don't you HATE IT when you write up a full post, with links and everything, and you hit that "Publish" button and you get an error message only to discover your whole post has just been lost????? GRRRRRRRRRRRRR!!!!!!

So anyway, Chloe's eye surgery has been postponed from tomorrow because the anesthesiologists are worried about her having it done in an outpatient facility because she has sleep apnea. They feel it would be safer for her to have the surgery in a hospital setting, where she can be admitted overnight and observed. REALLY? You wait til the DAY BEFORE the time-sensitive surgery to determine this isn't a good idea. OBVIOUSLY I want what is best for Chloe, but we couldn't have figured this out a month ago??? Her surgery is supposed to be performed within four months of the initial turn, which would mean she needed the surgery in January. It's now the first week in February and it's not even scheduled. Grrrrr. GRRRRRR!!!! I'm giving the scheduler a few hours to reach the doc, but I'll be calling back this afternoon to see if they're making any progress. Both my mom and husband were off tomorrow and we had everyone's schedules organized. We've been planning (and mentally preparing) for this for over a month! So thoughts, prayers, mojo, etc. for a speedy resolution and so we can get Chloe the surgery she needs!

Anyway, I hate to complain, especially today. We've lost another warrior. Another friend in our Ds community. Her name is Lois, and at 3 years old, she lost her battle with leukemia. Leukemia is more common in kids with Ds, and generally they do pretty well with it, but this was a particularly difficult case and poor Lois lost her fight today. May she find peace. Prayers for her family, please, as they navigate a new world without her.

Circus Stunts and Surgery

First things first, Chloe's having minor eye surgery this Friday to repair strabismis in both eyes (turning in). The surgery will be some time between 8 and 8:30 and should last about 50 minutes. Recovery is expected to be fairly easy with about 2 hours of crankiness related to the anesthesia and then possibly some itching at the incision sites in her eyes that night, but generally she should be up and running around within 6 hours. We expect it to be an uneventful day, but welcome thoughts and prayers. I'll post an update as soon as I can.

Now on to Chloe's latest "circus stunts". As you can see from the picture below she likes to perch herself on the arm on the couch. What the picture doesn't show is her lunging off onto the couch!!!! And as impressive as this whole balancing/daredevil act may be, it's nothing compared to when she climbs over the back of the couch onto a wicker table, STANDS up and JUMPS off onto the couch!!!! Lord help me!

Buried in Snow

Here we are, with snow up to our eyeballs and more snow on the way!!! Hard to believe how snowy it's been this winter in the Northeast. We're setting records left and right!

Flattery Will Get You EVERYWHERE!

I recently had someone tell me that she wishes she could be a parent like me. At first I thought she meant a stay-at-home mom, but then she went on to explain how she never sees me yell at my kids (okay, truth be told, she's just never SEEN me yell at my kids LOL) and that when she thinks about her own kids she reminds herself of me with my three kids. I was so touched and flattered! I mean, who cares if it's not completely accurate?! Who cares if sometimes I DO yell at my kids? Because the truth is I work very hard every day to be the kind of mom I want to be. I definitely don't consider myself there, but I think recognizing it and working on it is half the battle. So even though my BFF laughed (yes LAUGHED) when I told her the story, I'm still flattered by the compliment that someone doesn't think I'm a crazy mom, but one to aspire to. I may know the truth, and will keep myself grounded in the reality of my parenting, but I'll take the praise too. :)

Chloe's Tricks!

Chloe's keeping us on our toes!


In case you're wondering, she stands in her swing and swings it!

Walking

More Chloe walking. It's short but sweet. Hope you enjoy seeing her walk as much as I do!!!

We Have a DATE!

Friday, February 4th is the BIG DAY! That's when Chloe will have her eye surgery. It shouldn't be a big deal, but sugery is always a least a little nerve-racking. I'm sure she'll do fine. . . it's mommy and daddy you have to worry about! LOL

Other than that, things have been pretty quiet around here. We had an absolutely wonderful break with my husband home. We spent lots of time with family and friends and were able to enjoy some nice family time before heading back into the "real world" this week.

Chloe's been a busy girl learning to walk! She's all over the place now. it's so fun to watch her go. Below is a video of Chloe playing in her peek-a-boo chair. It's pretty cute near the end. :)

Ortho Visit

Chloe's orthopedic consult went great today. They took an x-ray of her hips and they look fine. Also, he did NOT see any leg length difference as his therapist thought. She does have internal tibial torsion (where the tibia bone, one of the lower leg bones, rotates in causing "in-toeing"). You can see it best when she's sitting in my lap with her knees straight on - her feet turn WAY in. My son had it and outgrew it no problem, but because Chloe has such lax joints and ligaments we'll watch it to make sure it doesn't negatively impact her walking and cause her to trip. The only correction for it is surgery, but at this point we're just going to watch it. We don't have to return for another few years. Yay! I couldn't handle another surgery right now. One thing at a time, please. ;)

Okay, Sadie's crying and Xander's yelling at her and my niece Macy is trying to negotiate LOL. Off I go. . .

Another Surgery for Chloe

We saw the eye doc today and they should be calling me tomorrow to schedule eye surgery for Chloe some Friday in January. He said it's really not a big deal for the children (haa haa - I love how he always says that "it's not a big deal FOR THE CHILDREN". As if the parents are a whole other deal!)

Tomorrow we go to orthopedics to check her out and get a baseline. She has signficant in-toeing of her left foot and her PT thinks her left leg is shorter then her right. We'll see what they think tomorrow. I don't know why I'm nervous about this appointment. I was nervous today too. I know the surgery is no big deal, but I'm feeling some anxiety about it. I'm sure everything will work out fine. Just another surgery to put under her belt. She's my little fighter.

Will keep you posted on tomorrow's appointment. :) If you haven't seen the video of her walking and talking, check out the previous post here.

Fun with Chloe!

Photo and video editing at www.OneTrueMedia.com

Me and My BIG Mouth!

Yup, me and my big mouth announced that Chloe's been doing GREAT wearing her eye patches and WHAM! That's the end of that!!!!

Yup, she threw it on the floor!

BUT the good news is, she's feeding herself!!!!!!!!!!!!!!!!!!!!

So life is still good! :)

Yes indeed, life is good.

Chloe update

Sorry it's been awhile since I've updated. Getting busy with the holiday season. Chloe's had a nasty cold for about 2 weeks now. She's been in great spirits and even kept her appetite up (usually the first thing to go with her), aside from not being able to drink because of her stuffy nose! Last week Xander and Stacey were both diagnosed with strep throat and even though toddlers are much less likely to get strep, I thought I should take her in yesterday since she just didn't seem to be kicking this cold. I wanted to make sure nothing else was going on. Sure enough, doc took one look at her throat and said "I'm swabbing it!". He still didn't think it was strep because other than the way it looked, she wasn't showing symptoms of strep. But the 5 minute test came back positive, so we're treating her with antibiotics now. Hopefully it'll kill any sinus infection she might have too. So now 3 out of 5 of us are on antibiotics! I'm happy to say, it's been a mild infection for each of them. I'm just so thankful that Chloe's been able to fight this off like she has, almost like nothing's going on. So many of our Ds kiddos are sick right now. I mean like REALLY sick. I read on Facebook and other blogs about ER trips and admissions and even life support, and I am incredibly thankful that Chloe has remained so strong. My thoughts and prayers are with those kids and family that are not so lucky.

On a more upbeat note, Chloe's doing GREAT with her eye patches! She wears them everyday without fail. She's so cute with them on too. She only has to wear one for an hour each day, so it's really no big deal. The glasses on the other hand, are a completely different deal! Too bad she doesn't have to wear the patches all the time and the glasses for only an hour! Oh well!

Happy Holidays

Happy Thanksgiving from our family to yours! Enjoy the holiday season!