Our visit to Toronto and two visits from Pepe Le Pew

Recently, we spent a week in the company of some of our Canadian friends and Sylvie's quasi- ex-pat grandparents. Here is our story. (THUNKTHUNK!) No, there are no actual Law & Order elements to this story (thank goodness!), I just couldn't help myself. Our pal S, soon to be wed to the lovely A, drove us to the airport bright and early for our 9:30am flight...which morphed into our 11:55am flight. As a result, we were stuck at the airport for about 4 hours having arrived 2 hrs early for the international flight as recommended. Sigh. The flight itself was uneventful and Sylvie was a perfect angel the whole time. Upon preparing to deboard the plane, a guy sitting behind us noticed our girl and said in a slightly shocked voice, "I had no idea there was a baby there! I've never had that happen before!" We took a cab to mom and dad's new home. Dad had taken off of work early in order to meet us as mom was herself flying back from a florist gig in DC the same day. It was our first time seeing their place and it's really, REALLY nice; spacious and airy, with plenty of wall space for their extensive art collection. They also have some great neighbors, several of whom we met while attending their weekly card night. Theron, Sylvie and I had the bad luck to all come down with some variation of cold/flu/infection which wasn't fun. Sylvie especially was wheezy and coughing and her nose was running like a faucet. (I bore many a shiny snail-trail across my chest from being a convenient nose wiping device while holding her.) We bought her some infant cough and decongestant drops which a) did little good and b) kept her awake allll night which did us little good. We took her in to see mom and dad's GP who kindly agreed to see her the next day and he diagnosed her with her very first bronchial and ear infection. (Not only does our kid like to get sick at less than opportune of times...she also does a very thorough job of it!) We got a prescription for amoxicillin aka that "yummy" pink goo as well as not one, but TWO inhalers. Sylvie was much more amenable to taking the pink goo although she was apt to let it ooze out of the side of her mouth if we don't keep an eye on her but she was not a fan of the breathing treatments which had to be administered through an Aerochamber MAX (with mask). Luckily with a little encouragmetn (read, lots of cheering and hand-clapping afterwards) Sylvie began to take her breathing treatments like a pro and now claps cheerfully for herself after completing them. Only a few more days to go and she's done with 'em. Despite her illness, Sylvie had great fun beating up on G'pa Dave and learning a new fave song from G'ma Judy: the Banana Splits theme song. She also made out like a bandit gift wise. Some of the things she received include: a stuffed cat, stacking/nesting boxes, a set of instruments (most of which stayed with the g'parents for future visits), a prism to hang in her window back home and even two dolls from a friendly neighbor lady. During our visit we also went into Toronto proper for an overnight stay with the always awesome W-C family, aka D, A and O. D and I have known each other since we were angst-ridden (is there any other kind?) teenagers and it was kinda neat watching our two offspring playing together...or at least playing near each other. I guess we'll have to wait a few years before we'll get to hear such cries as, "Mooom! s/he took my toy! Moooooom! I don't want to play with a (snear of disgust) girl/boy!" D took us a for a walk around a near by honest-to-god working farm where Sylvie got to see her first real live farm animals. Another old highschool buddy of mine, D, lives in the same building as D and was able to join us all for dinner at a little pub around the corner later that evening. By keeping the kids placated with tastes of our food (esp. Sylvie who loved bits of my steak and mushroom pie as well as Theron's liver and mashed potatoes), we five adults managed to carry on quite a lively conversation although I know Theron and A had a few (ok, several) eye-rolling-there-they-go-again moments when us three gals reminisced about our school days. The next day, D, A and O took us for a long stroll through some of the local places of interest including Kensington Market where they treated us to some fantastically tasty portuguese custard tarts from a neighborhood bakery. Their generosity did not stop there as later D purchased two gifts for Sylvie: an Ugly doll and a beautiful tutu made out of sheer red ribbon tipped with tiny red ribbon roses, which I can hardly wait for Sylvie to be dancing around in. Thanks again Doah! Alas, our time together had to come to an end and so we said our goodbyes, grabbed our overnight bag and hopped a streetcar-subway-GO train back to Ajax to spend one last night with the g'parents before our return to the States. Meanwhile, back in good ol' MA... Cousin C, who was kind enough to dog/cat sit for us while we were out of the country, was having quite a run of bad luck. First, Izzy got into a box of chocolates, which as any dog owner knows is not a good thing. Luckily Izzy puked up most of what she'd eaten and and while under careful observation by C exhibited no further symptoms of chocolate poisoning. Then poor C had a bout of food poisoning herself and while still recovering from it had to deal with Izzy who had a run in with the business end of a SKUNK. Yikes! After a couple of dousings with tomato juice and Pantene Pro V, Izzy smelled less skunk-like and more as if she'd just had a perm by the time we got back home. You'd think that Izzy would have learned her lesson from the first skunk incident,,,but no. We'd been home only a few days when she came in from being in the backyard drooling, pawing at her snout and reeking of skunk musk. Theron bravely took it upon himself to bathe our pungent pooch, using another recipe (as seen on episode 16 of Mythbusters) of peroxide, baking soda and dog shampoo. Then thanks to Oust, scented candles and occasionally cracking the wondows despite the freezing temps, our home no longer stinks of parfum de pepe le pew. 

Doctor, doctor, gimme the news...over the phone next time, will ya?

Roundtrip bus fare: $3.60
Roundtrip subway fare: $2.50
Office visit co-pay: $15.00
Roundtrip travel time: about 2 hours

Taking a trip into town to see our Genetics doctor who told us that the blood test came back negative for the known gene mutation associated with noonan syndrome but that only about half of the cases with a clinical diagnosis do have the mutation (which I already knew)...

POINTLESS.

I mean, seriously, couldn't he have just called me and saved me the time and money???? He really had nothing else to add but to tell me things I already knew---such as, "did you know that there is a doctor here who is running a study on noonan syndrome?" (Uh, yeah, I mentioned it to YOU at our last appointment) and would we like Sylvie to be involved in the study? (YES....again, something I had brought up at our previous appointment). The doctor who is heading the study happened to be in an adjacent office so our genetics doc asked her to come in and talk to us. She told us that her assistant would be calling us shortly to arrange for us to bring Sylvie in to be enrolled in the study which would entail an exam and yet more bloodwork. While I hate subjecting my baby to needles as much as any mom, I think in this case it's worth it if Sylvie's participation in the research can help draw a clearer picture of noonan syndrome.

The dreadful irony of Sylvie wearing a sleeper with the words "if they could just stay little" written all over it

I haven't been blogging my usual amount because Sylvie hasn't been taking her usual naps. Lately she's only been going down for one long nap in the afternoon and also since Theron's contract ended he's been on the computer most of the time he's home trying to find a full time job. I just don't get as much of a chance to get on myself anymore. But since Sylvie is asleep right now and Theron is out running errands it's alllll mine, bwa-ha-ha! We FINALLY heard from Early Intervention; in fact our PT is supposed to come by today at 4:30. I'd called her and left a message yesterday morning and when I didn't hear back I called the director and left her a message this morning and our assigned PT either heard from above to contact us or just got around to checking her messages. I guess we'll see how today goes. I'm very much hoping that Sylvie's gross motor skills will get back on target with this therapy. I know al kids develop at their own rate but it's hard seeing babies 2+ months younger than her who are walking around when she's not even crawling. Sylvie had stomach bug this past Friday night/Saturday morning. I've been more than a little nervous about maintaining her hydration but she seems to be ok. We've been struggling to get her to eat more since she pretty much only had breastmilk for a day and a half, then she'd take yogurt, maybe 2oz at a time and finally she's started back on dinners, but she'll still only take 1.5-2oz at a time of them. So much for increasing her calorie intake. We're supposed to go see the nutritionist again tomorrow. I'm so afraid that she and the GI are going to insist that Sylvie needs a gtube. If she really does, then of course we'll do it but I so hope to avoid having to go that route. At our GI appointment last week, the doctor expressed concern that Sylvie's weight had not appreciably changed since she saw her a month prior and did mention the possibility of needing a gtube. However, she wasn't pushing for it just yet, so there is hope we won't have to use one. But Sylvie having been sick twice now obviously isn't helping her gain weight. What's really scary is that before Sylvie was sick the first time, she was eating A LOT and still her weight gain was slowing. Now that she's been sick twice and is eating so much less...It just makes me feel so damn helpless.

Rockin' Out

Another awesome friday playdate, another awesome photo, (courtesy of S's mom, -- thanks M!) Here's our Sylvie astride Stanley the Snail, waving her fingers conductor-style in time to "You Are My Sunshine," which plays when one of Stanley's antenna nubs is squeezed. We also received some fantastic homemade playdough from our lovely hostesses today. If you're interested, you can find the recipe for it, as well as other art material recipes, here.

January update

This last month has been really amazing, seeing how Sylvie is growing and changing every day. Although she hasn't added any new words to her vocabulary aside from the ones I've already mentioned, she uses the ones she has ALOT. Especially "kitty" and "daddy". Boy, does she love that kitty. Kih-tee...kit-tee...kitty!...kih...tee...or sometimes just kee! I was dangling one of Sylvie's little combs in front of Smudge the other day and when Smudge went after it Sylvie thought it was THE MOST HYSTERICAL THING EVER. She was laughing almost nonstop! We tried to get some video of it but by the time we got the camera set up she was mostly over it and would only cackle a bit. That's her usual way with humorous things; it's hysterical, then funny, then mildly amusing and then she may smile about it or she may not. Some her other new skills include: Putting one of her colored stacking rings back on the pole. She did it a few times so I know it wasn't a fluke. I told her she'll have to show daddy when he gets home and she immediately started looking around and saying, "Daddy? Daddy?" Flipping through her books and pointing at various pictures. We have a little especially-for-babies photo album that was a gift from one of my cousins (thanks A!) and Sylvie loves to look at it and point out her daddy's picture. Right now every picture is daddy to her, even the ones of mommy, so we're still working on that one. Trying to work the "I'm-too-sleepy-to-eat-right-now" con. She'll start rubbing her eyes very dramatically, much more so than when she really is tired, when she's decided she's had enough solids. But once you take her out of her high chair she's suddenly wide awake! She's also started to appreciate music and will even wave her hands to the beat sometimes, especially when I sing the ABC song while changing her diaper. (If you can call that music.) And the cutest new trick of all is that she will try to comb her own hair. Sometimes, she'll even be holding the comb the right way when she does it!

She may not yet walk the walk, but she's beginning to talk the talk

Vocabulary so far:

mom/momma
dada/daddy
kitty (seems to mean both Smudge and Izzy)
duckie (as in rubber)
Plus lots of other sounds/words that probably make sense to her but which we haven't been able to decipher yet.

She's starting to point at things a little and finds it hysterical when the dog "attacks" the cat and if someone sneezes. She's also kinda blowing kisses; if you smack your lips at her she'll do it back to you. I even had her putting weight on her legs but she'll only do it for a few seconds at a time. Our little girl is growing up! ::sniff::

December update

As you already know from the previous post, the holiday this year was not the best but up until the whole hospital "adventure" Sylvie had a pretty good month, playing with her pal Sara, breaking in her new winter hat and mittens, sitting on her own for longer and longer periods (although she still needs help to get into a sitting position), and learning to wave AND clap. Theron and I are trying to teach her to blow kisses but so far she seems content to just alternate waving and clapping every few minutes. In the last few days, she's started making a new noise that cracks me up; kind of a Marge Simpson-esque growl of disapproval sound, but she usually makes it when she's intent on something. She'll also mimick me mimicking her so we'll be growling back and forth at each other, both grinning broadly the whole time. Sylvie had her evaluation with Early Intervention and we should have a therapist calling us soon to set up day and time for her therapy sessions which will be an hour or so once a week. We're also hoping to get into a play group hosted by EI which contains "normal" as well as "special needs" kids which I think is great. Tomorrow morning, we're scheduled to see a gastroenterolgist to see if Sylvie's extremely slow growth is possibly due to problems absorbing nutrients and we have another appointment with a nutritionist on Monday. I've joined an online Noonan Syndrome support group and hope to help my friend M (S's mom) start up a local group as well. There was a long thread recently on slow growth and weight gain and I was reading it and thinking to myself, "EXACTLY." It really helps to be able to to talk to people who have Noonan or who have kids with Noonan. So that's us right now. I'll try not to let such a long time go between now and my next post!