Happy Hearts

Chloe had her annual heart evaluation appointment on Monday and after 2 hours we got the good news that she is doing GREAT! Her heart looks fabulous.  She still has a narrowing of her aortic arch, but that doesn’t seem to be causing any problems and she also still has a “leaky valve” and will continue to take medication for that. But other than that her ticker is working just fine and we’ve got some happy hearts in this household!!! She’s reached 25lbs finally. Our little peanut is growing! At 3 ½ years old she’s fitting into 2T clothes. Not too bad. So the mystery of her cold foot / warm foot remains unanswered and probably will go unanswered (Chloe being Chloe), but the heart doc recommended a visit to a rheumatologist at Yale. Not sure what our pedi will say about that, so we’ll see. Maybe we’ll give it more time to see if it happens more. Heart is working fine so I’m feeling much more relaxed. Glad to get that appointment out of the way. As for the rest of the gang, we’ve slowly recovered from our various illnesses and seem to be back to “normal” – whatever that is (although since writing this first draft, I’ve developed yet another cold). We are ready for spring. . . bring it!

Here's a video of Chloe "reading" a book.  She obviously isn't actually reading, but the highlight of the video is her using word approximations and signs together.  You go girl!!!!

Chloe Being Chloe

Chloe likes to keep me on my toes. She likes to make me worry. Okay, maybe she doesn’t actually LIKE it, but that’s what she does anyway. So what’s she been up to as of late? First, let’s start with her “cold foot”. She continues to have an occasional cold foot, leaving the docs stumped because it’s not consistently cold and she doesn’t seem to have any pain. But the cardiologist (heart doc) moved up her echocardiogram (heart ultrasound) from April 30th to March 5th so we can rule out cardiac issues. We’re all feeling fairly confident that it’s not a heart issue, but that little nag of worry still hides in MY heart.

The other drama came with a bout of the stomach bug last week. She got it Monday night and each time she vomited (which was about every 15 minutes for 2 hours) her tongue turned a purplish-blue color. It was startling enough that I called the pedi. He didn’t have an answer as to why that was happening because she didn’t appear in distress and the color around her mouth was fine. Probably just Chloe being Chloe. He ordered some Zofran to stop the vomiting and she eventually calmed down. Over the next few days she continued to have these very purplish-blue feet and hands and just generally didn’t look good. Another call to the pedi and it was determined that she wasn’t regulating her temperature due to the virus. Nothing to be alarmed about. Just Chloe being Chloe.

Everyone keeps telling me that her plumbing (aka her heart) is fixed, but I can’t help but always wonder if there isn’t something ELSE going on. I can’t help but remember when she was 2 weeks old and went into severe congestive heart failure for unexplained reasons. “It’s NOT related to her AVSD”, they told me. “We don’t know what it is”. I knew those words would one day come back to haunt my memories. Do I think this is that? Absolutely NOT. She is NOT in any distress. NO breathing issues of any kind (aside from a blue tongue when vomiting). But I guess I’m just predisposed to worry about her now. Despite all my worrying, it’s more likely than not, that it’s just Chloe being Chloe, but I’ll be relieved to hear all looks good at her annual cardio appointment next Monday! Keep her in your thoughts and prayers, if you don’t mind, for some resolution. As always it’s greatly appreciated.

As for the rest of the crew, a quick update: Sadie had the stomach bug last week too, but is recovered and back to her old self. She’s finally decided on an “activity” all her own – piano lessons. I’ll be looking into that soon. Xander played in the Squirt Norris Division State Hockey Tournament this past weekend and his team went into the championship game on Sunday undefeated. They lost 5-4 in a well-played nail-biter. Turns out Xander was playing with the stomach bug and promptly got off the ice and vomited all over! YIKES! He’s been in bed recovering since then. Oh and a trip to the dentist showed he’s grinding his teeth and is potentially a cause of his headaches. Stacey finally had a sleep study and found he has sleep apnea. Hopefully once he gets on the CPAP he’ll start feeling better. As for me, I got the stomach bug last week too and took some time to recover, but am now feeling much better. I have my sleep consult tomorrow morning. Hopefully I’ll get some answers. :) I think that about covers it! Until next time. . .

Bad Cold and a Mysteriously Cold Foot

Our little Ms. has a terrible cold.

She’s had it now for over a week. Runny, gooky nose and cough. We got the vaporizer running at night and I’m using the saline spray, which she is surprisingly good about. She started out with a fever and cough, but that only lasted about 24 hours. And then the full-blown cold took over. But I think slowly she’s getting better. She still plays with her usual zest. The only WEIRD thing that’s been going on is she’s been waking with one ICE COLD foot and one warm foot. It’s very weird. She usually has TWO ice cold feet when she wakes in the morning, but 3x now it’s been just one foot. And it’s not consistent. 1x was about a week ago and then the other 2x were yesterday and the day before. I forgot which foot it was the first two times so I’m waiting for it to happen again to determine if it’s the same foot (the RIGHT one). I spoke to her cardiologist today (after waiting ALL DAY yesterday for NO CALL back) who said it didn’t sound like her heart, but that she would be willing to move up her April 30th annual appointment to mid-March. They want to look at her aortic arch. She doubts that’s the cause though because she thinks it would be cold on both sides and all the time. She also said if it IS occurring on the same side each time that she thinks our pedi should order a Doppler ultrasound to check her leg vasculature. I’ve got a call into him next. . . so stay continued. It’s probably one of those weird things that will turn into being nothing. Thank goodness she’s otherwise acting “normal” LOL because otherwise I’d be more worried!

IPad and Other Wonderful Things

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I was initially going to title this post “A Hot Mess” and talk about what a mess I’ve been with a potential sleep disorder, depression and anxiety plaguing me, but honestly, who wants to hear about that?? I have so many good things to write about and I’ve been so bogged down with my own . . . shall we say “set-backs” that I haven’t been able to muster the time or energy to properly update all of Chloe’s progress and good news. So here it is. .

Back in December Chloe was awarded a grant for an IPad. She’s 3 years old and is still fairly “non-verbal”, communicating primarily with some signs and word approximations. But although she has around 100 different signs, she wasn’t really using them or her word approximations to communicate effectively. So coincidence or not, once she got her IPad her language and communication skills, including signing, started to explode. Maybe it’s the more time I (and her AWESOME nanny) specifically spend with her since we use it together, or that school just happened to “click” for her around the same time. . . whatever the case is, she got the IPad and her communication started to soar. It’s so wonderful to watch her playing with it and repeating back the various words and imitating sounds. She still has a LONG way to go and struggles with certain sounds/words (like “Rudy” our cat, or “Chloe”), but what a gift to see her pride in her accomplishments.

Believe it or not, the other wonderful thing Chloe’s got going on is her health. Wow, I never thought I’d find myself saying THAT!!!! She’s doing so great. Eye doc, endocrinologist (thyroid), and pedi have all given her clean bills of health! This includes an all-clear neck x-ray (there is the potential for a small percentage of kids with Ds to have weak necks that can put them at risk)! She was also negative for Celiac Disease! We’ve got her cardiology appointment coming up in April, which I completely expect to be nothing but excellent. And I think that covers it. I mean, minus of course, a few colds and tummy troubles, which she was able to fight all on her own.

Chloe had her first school play-date a few weekends ago. She was invited to a “typical peer’s” house (that always cracks me up. . . what the hell does that mean anyway???) for a wonderful afternoon. I stayed with her of course, but she had a blast. I had maybe one fleeting moment of thinking, gosh it would be so different if Chloe didn’t have Ds. . . but then I remembered that Chloe wouldn’t be Chloe and I love her for who she is! Even though she had the attention span of a flea, she clearly brought joy to her friend and her friend’s family. They were thoroughly enjoying her. Yes, I know we are lucky to have found such supportive friends, and I’m sure there will be days when we are faced with judgment, but for today, things are good.

I can’t end without an update on my other munchkins (haa haa, they’ll probably kill me for calling them that!!!!) Xander celebrated his 11th birthday last week. 11 years is so hard to believe. Doesn’t it go by so fast???? He’s such an amazing kid with a wonderful sense of humor and maturity about him that ironically gets him in trouble. He’s enjoying his first year of offense in hockey and adjusting to being a middle schooler (our district has a lower middle for 5th and 6th and an upper middle for 7th and 8th). He’s an amazing big brother to BOTH Chloe and Sadie, although of course they all have their moments. Xander’s also been struggling with headaches and nausea for about a month now, but we’re working on getting to the bottom of it. . . we THINK they might be “stress headaches”. Stay tuned. . .

As for Sadie. . . well what can one even say about her? She’s a true girl in every sense of the word. She loves make-up and clothes and shoes and pretend play. She wants to be a teacher and LOVES first grade. She isn’t interested in “signing up” for anything. She’s definitely a homebody and enjoys doing stuff here. She’s also a great sister, although she certainly saves all her “challenging behaviors” for us at home!

I think that covers it. You don’t want to hear about Stacey. . . he’s a “hot mess” too. LOL Summer can’t get here soon enough (Spring is his busy time so we’re waiting for SUMMER!) But all-in-all we’re holding our own.

Some Pics

Whirling Dervish

Those are the words recently used to describe our dear sweet Chloe. I have to admit, I had to look up what the heck it was, but just from the sound of it, I figured it would fit her. According to Wikipedia.com, they are known as the Whirling Dervishes due to their famous practice of whirling (spinning one’s body in repetitive circles). Chloe does go through life spinning away. Tasmanian Devil also comes to mind. . . I picture her spinning through the house wiping things out as she goes, leaving a path of destruction behind. Or maybe even better yet, an octopus with many arms and tentacles, reaching for and touching, and yes, exploring, EVERYTHING she comes into contact with. A simple example has to be bedtime in the bathroom. She just had a good soaking and it’s time to get her out, while her sister remains in the tub finishing up. I’ve got her all dry and dressed and reach quickly for the toothpaste and toothbrush. As I let go of her for a mere second to put the toothpaste ON the brush, she darts (or whirls) over to the tub and in a flash has her hands in the tub and is hoisting a leg up over the side. I quickly grab her, pull her towards me and start brushing her teeth. As I again let her go briefly to get her sister out, Chloe’s fast like lightening speed leads her to the toilet, where plop, her hands are in. ARGH! Hand washing (and ARM washing, for that matter) and a whole new outfit are in order. All that in a quick 5 minutes. And this is typical of Chloe in the world, hands on or in everything, moving from one thing to another. Don’t get me wrong, I appreciate her desire to learn about and explore her world with the zest she exhibits. I truly think it is one of her gifts. From sick baby to this energized, curious little girl, I DO absolutely count our blessings. It’s just that sometimes, and I really do mean just sometimes, I find myself EXHAUSTED. Mentally and physically exhausted. I know that it’s okay and even on those days when I’m not even sure how I’m going to do this, I can think back to those days of struggle that SHE had and realize that this tough little cookie standing before me is just embracing life for what it is – a series of amazing wonders. . . even if it’s water in the tub or water in the toilet (ewww!), it is amazing to HER and I need to respect that.


It’s interesting. . . we spent this past Saturday at the CT Down Syndrome Congress convention. I was extremely moved repeatedly by the key note speaker and his stories of people with Down syndrome and how they have repeatedly overcome the odds, just like our Chloe. But I also found myself afraid at times. I don’t THINK of Chloe as having Down syndrome most of the time. I just think of her as Chloe. It helps me to NOT think about the future with her sometimes. For example, will she ever get out of this toddler-like stage of getting into everything????? Sometimes I don’t want to hear that the answer is she may not for a long time, because that just overwhelms me… to think like that. Because when I look at HER and see HER and not her Down syndrome I can focus on who she is and who I think she will become because of who SHE IS and not what Down syndrome “predicts” she will become. . . but being at the conference reminds me that she does have this thing called Down syndrome. And it is NOT who Chloe is, but is rather a very important PART OF who she is. And that is something I will embrace.