Sunday, February 27, 2011

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.

Monday, February 21, 2011


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. :)

Saturday, February 19, 2011

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.

Tuesday, February 8, 2011

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. . .

Monday, February 7, 2011

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!!!! ;)

Thursday, February 3, 2011

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.

Wednesday, February 2, 2011

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!