is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.
Sunday, February 27, 2011
Like Magic
Monday, February 21, 2011
POOP!
I'll try to post some pics and a more cheerful update soon. :)
Saturday, February 19, 2011
Continued Recovery and a Bug?
Okay, just to prove to you how good she's feeling I've included a video below. Enjoy.
Tuesday, February 15, 2011
Monday, February 14, 2011
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 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
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!