19 months!

19 months old today! Today Sylvie is 19 months old and to celebrate, we took her to have a renal ultrasound...ok, the truth is she was due for a follow-up with her urologist and we just happened to get an appointment for today. She held quite still and didn't fuss once throughout the procedure. Even better, the ultrasound showed everything to be a-ok so we don't have to follow-up again for 2-3 years. Yay! She was weighed and measured as per usual and her stats were: weight 18lbs 10oz (she was clothed and wearing a possibly wet diaper, so she's probably more like 18lbs 5oz) length 28.5" (which is 1.5" less than we were told at her 18 month appointment so let's just say she's 29"+/- 1") Walkin' anduh talkin' She took her sweet time but at long last our wee one is walking! She's still pretty unsteady on her feet but she's taking more and more independent steps everyday. Sometimes she insists on wearing her little black mary janes before she'll walk...pointing at them insistently and saying "sooz! sooz!" She then very helpfully sticks a foot in the air to indicate where the shoe is to be placed. She is very particular to her black shoes which might be a problem soon because I don't think she'll fit into them much longer. Just another bridge to cross... Chompers Sylvie's teeth are also finally starting to fill out (fill in?) and we are now up to SIX with a couple more clearly on the way. we're doing our best to include more and more 'grown-up' food in her diet now that she can actually chew and she's eaten almost one whole chicken nugget cut up into small pieces! Other foods she likes include: spinach with cream cheese, corn, green beans, apple, pear, peach, banana, grapes, assorted cheeses, goldfish crackers, cheesy poofs (the organic 'healthy' kind...hey she needs the fat!), bits o' veggie burger, refried beans, ramen noodles and she just loooves guacamole. Oddly though she is only mildly interested in icecream and pudding! Go figure. Rainbow bright Since Sylvie sometimes eats better when she's distracted, we've done various things in the past to keep her entertained enough to keep on eating; blow bubbles or read stories, etc. We recently made some color flash cards (ie. squares of colored paper "laminated" with packing tape) to show her at mealtimes, along with signing and saying the colors. We'll ask her to identify the colors one by one and she gets 'em right about 80% of the time. (She seems to have the most trouble with orange and green.) Do we have another artist on our hands? Man, I hope not...hey kid, PLEASE don't follow in our footsteps! Be a lawyer or a doctor or...President! Uh...no pressure, Sylvie.

Independence Day

For several months now, Sylvie and I had been attending a local infant/parent playgroup coordinated with her Early Intervention therapy. Once a week, we'd ride the bus to meet with other parents and their babies and a "teacher" for an hour and a half. We'd sing songs and play little games during "circle time" and then the children would have lots of free time with toys, instruments, books and play equipment. A child attended this group up until 18months and the progressed to the toddler group which they attend sans parent. So today we put our darling girl on the bus to her toddler playgroup...ALONE. We were both excited and quite scared the whole time she was gone; afraid she'd act up/get hurt/get kidnapped...you know, the usual concerns of parents learning to let go.

All went well apparently as we never received a call demanding we remove her from the premises with strong urges to seek an exorcist immediately and when the bus driver dropped her off, she claimed that Sylvie had chatted happily both there and back. Parents? She don't need no steenkin' parents to go with her to playgroup!

I did attend her very first toddler group last week so as to be familiar with what Sylvie would be doing while there. It was very similar to the infant group but with more structure and more 'mature' (in a toddler sense of course) activities, like coloring. There is even a computer in the room with toddler appropriate games...which probably means that soon we'll have THREE people jockeying to use the computer at home. They do free play, then circle time, followed by gross motor skills play (in the same room where we had our infant group) and finally a snack of juice and kix/goldfish/ritz crackers. There are three teacher/therapists in the group of 8 children and at the end of the day a list of the days activities is sent home with each child so us parents can get an idea of what they did that day. And once she's done some, we'll also be getting Sylvie's art pieces! Pretty neat, huh?

18 months and counting

Has it REALLY been 18 months already? Sylvie had her 18 month appointment earlier ths week and her currents stats are as follows: weight 18lbs length 30" teeth 4 She's still a wee thing, (no surprise there), but she's following the growth curve and developmentally she's ahead of her age group in everything but gross motor skills. She has finally started to take a step or two every now and then though, so hopefully she'll catch up in the regard soon. 5 and a half hours with a toddler on one's lap is no easy thing So Sylvie and I are currently hanging out with Auntie M, Uncle T and cousin J in sunny Seattle, WA. Yes, I said sunny. (Contrary to popular opinion, it doesn't actually rain every day here, ya know.) We flew in late Wednesday night/early Thursday morning and boy, were my arms tired. It is not a picnic trying to contain a bouncing ball of toddlerness in one's lap for several hours and then when she finally zonked out, it was almost impossible for me to get into a comfortable position wihtout disturbing her. I spent almost the entire flight assuming various pretzel-like contortions at sloth-like speed, hoping in vain to find a position that wasn't going to give me back spasms. At loooooooong last, we finally made it back to terra firma without any whiny child induced air rage or permanent damage to me. The Chubaliciousness of baby J Let me just say right now that baby Jack is the cutest boy in the whole wide world. All big eyes and chubalicious thighs. It's funny how while he isn't really a chubby baby per se, he has Michelin Man-like thighs. His thighs are pure squishtastic, chewy, nummy goodness! Sylvie just loves her cousin J and we've already gotten some adorable photos of the two of them together. 

Update, including another ER visit

Signs, signs, everywhere signs Sylvie has added several more signs to her repetoire including: grapes potato grass laugh pear peach car strawberry walk carrot One morning recently she woke up around 6am, which is quite early for her (and us!) so I brought her to our bed and tried to coax her to go back to sleep for a little longer. I signed, sleep more please to which she responded, also in sign, milk please thirsty. How could I say no to that? In sickness and in health A little over 2 weeks ago, our girl woke up in the morning crying for no apparent reason and it took quite a while to console her. She felt hot but when I tried to get her temp, she was too fussy and wiggly for me to get an accurate reading and since she seemed to rally later that day, we put it off to teething. But that night she had a great deal of trouble sleeping, only nodding off for short periods of time before waking to cry fitfully for longer periods. I brought her to bed with us in hopes that she would be soothed to sleep more readily but it didn't help. Theron tried to help out with soothing her but she preferred to be glommed onto mommy 99% of time...which continued for the next few days. As did the whining, crying and fever. I managed to get a temp on Thursday morning and since it came up as 102.2F we called up her pediatrician who had us come in immediately. We'd given Sylvie baby Tylenol so by the time we got to the doctor it had kicked in and while she was still quite miserable, her temp was much lower. The doc checked her ears and throat which (at the time) looked fine and asked us to try and get a urine sample...no easy feat with a 17 month old girl. There we were in the examination room; me holding our miserable, crying naked child on my lap, atop a puppy pad to soak up any urine which might miss the specimen cup that Theron held to try and catch the flow...which didn't come and didn't come... About 40 minutes into this excruciating activity, the doctor told us that she wanted to get a blood sample (joy) from Sylvie and that we could try to get the urine sample again back at home. During our second attempt at pee-catching, we received a call from the doctor around 5:30pm saying that the test results were enough of a concern that (double-extra-super-happy-joy) we should take her to the ER for further tests. It wasn't an emergency per se, but we needed to get there sooner rather than later. To sum up our most recent oh-so-enjoyable- visit to the ER: It was almost a carbon copy of the first time we were there. Once again, they used a catheter to get a urine sample (during this lovely procedure, Sylvie's eyes got very big and she frantically signed ALL DONE , which was somehow, both horrifying and funny at the same time) and more blood drawn had to be drawn and she received, that's right folks, ANOTHER IV FOR DEHYDRATION. I'd been doing my best to get her to drink and I thought we were doing pretty well but I guess because of her fever she'd been sweating it out almost as soon as she took it in. She was only slightly dehydrated but since she's so small, it was judged best to get her fluids back up asap. The worst of it is that she'd been rallying up to the point when they came to do the needle pokes, and was acting quite like her usual self...but we were soon both bawling our eyes out as the needles were put in her tiny arm. HOW I HATE THAT! None of us had been getting much sleep for the past several days and Sylvie was doubly depleted of energy having just shrieked her lungs out so all three of us pretty much zonked out in the little room they'd put us in for her treatment; Sylvie and I on the bed and poor Theron in a less-than-comfy chair. The nurses came in to check on us periodically and finally after a few hours the doctor came in to say that all of the test results looked normal so far but that they would need to 'cook' for several more hours to be sure they were all clear. Since Sylvie was now rehydrated to the max and her fever was responding well to the Tylenol, we were finally sent home around 12:30 am with instructions to keep Sylvie hydrated and her fever down (well, duh), and to follow up with our pediatrician the next day. Upon examining Sylvie for the second time, the doc saw inflamation in her left ear and deduced that all of this grief and agony had been the result of a developing ear infection. I know it sounds as if she was a bit extreme in checking Sylvie for more serious problems but she told us that because of Sylvie's heart defects, she wanted to rule out an infection in her heart. I never thought I'd type this but, Hooray it was only an EAR infection! We were given a prescription for amoxicyllin and told to come back in a week to follow-up. But WAIT...there's MORE! Sylvie started acting more like herself after having been on the meds for a day and a half but we noticed that her skin seemed to be turning a blotchy, red color. It wasn't raised and didn't make her itch but we called the nurse help line and were told it was a fairly common non-allergic reaction to the medication and nothing to worry about. However, the next day I noticed Sylvie scratching at her thigh where a lovely, welty, hive had reared it's ugly head...and like magic several more popped up on her body. Once again I called the nurse help line and this time I was advised to stop the meds, give her some children's Benadryl and check in with her pediatrician when she was back in the office on Monday. Long story short (ha), the doc called in a new 'scrip to our local pharmacy, we dosed the kid up as per directions and today she appears to be fully recovered. Hurray! All's well that ends well, indeed. M is for MEL-MO During this time of illness, Sylvie was sorely lacking a 'wooby' or comfort object to cling to in her misery (well, other than me). This is not because we have no dolls or toys (ha!) but none that she has any particualar attachment to. BUT...she did request the presence of a certain red-furred, high-pitched-voiced monster who goes by the name of "MEL-MO" who you probably know as Elmo, a popular Sesame Street character, and yes they are one and the same. In fact, Sylvie met Elmo early in her life while visiting Sesame Street and stumbling into a fantastical place called, "Elmo's World," a place so amazing that it has it's very own theme song! That gets caught in your head and buzzes around and around inside ones noggin like a psychotic bee! Yes, Sylvie had fallen hard for MEL-MO and it was his sweet furry countenance gazing at her through the TV that helped to sooth her in her time of need. And when MEL-MO was not to be found on the TV, why, he was easily discovered on the internet! Sylvie would lean into the comfort of the chest of her father or I while happily murmuring, "Mel-mo...Mel-mo..." over and over again. Now that she is all better, her MEL-MO fixation continues. She has noticed that MEL-MO appears on her diapers and tells us so each time we change her. She asks for her MEL-MO bath toy when bathing and upon wakening each morning, points out her bedroom door towards the livingroom and the TV and says...what else?..."MEL-MO". I have it on pretty good authority that Santa is bringing her a MEL-MO doll for Xmas this year.

As promised...a nice, long update!

I apologize for my long absence. I know that I have let some of you down by not keeping you up to date with Miss Sylvie's progress and for that I am truly sorry. Now you can quit your yammering (mom) cuz here it is. Signing Time Sylvie's vocabulary continues to expand both in sign and in spoken word. As you may have seen from the June photos we are the type of parents who allow our child's brain to be corrupted and shriveled by regular tv watching. Well, regular dvd watching anyway. We are big fans of the Signing Time series and watch an episode almost daily. I'll ask Sylvie "What time is it?" and she gets very excited and signs time repeatedly then speed crawls to the tv where she signs time continuously until I start the show. As the signs are introduced, they are demonstrated very clearly by the host Rachel and then we're shown them being used by other adults, kids, toddlers and even infants. After a series of signs have been shown, there is usually a catchy song about using them. Theron and I watch it along with her and as a result we've all learned quite a few signs which we use with her throughout the day. I've been trying to jot down a list of signs she uses on a regular basis so that I can relate them all to you folks. The words that she also speaks, I'll put in parentheses her current spoken pronunciation. Here they are in no particular order: baby (baybee) time cracker (da-dur) cookie diaper (bi-pur) mom (mom/momma) dad (dah, dah-dah) more (mo) milk (mih) thirsty (tee) eat/food dog (dah-gee) cat (kih-tee) bird (bir)--funny story about this one. One day a few weeks ago, we were looking out the window during a torrential downpour when Sylvie started to sign bird. I looked and looked but didn't see any birds and thought it strange that one might have flown by in such heavy rain. Sylvie kept signing bird though and then I noticed that the postal truck was parked in view. Could it be that Sylvie recognized the highly abstracted eagle logo on the truck as a bird? There's no way I can know for sure but I'm just gonna say yes; our kid is a frickin' genius. bath (ba) ball (bah) cheese (teeze) apple (ba) banana (nanna) clean (kee) bear (buh) day sleep friend (Airwah)--well, Sara IS her best friend after all book (buh or booh)--Sylvie LOVES to be read to. Over and over and over again. Sometimes we even get to the end of the book but usually she'll bring us a book and we'll start to read it, but she'll crawl away to get another book for us to read. Rinse, repeat. hat cold strong--she only does this in response to us asking her "How strong is Sylvie?" Our follow up to "How big is Sylvie?" hot train all done/finished (done, done?) no (nonononono)--she is already showing signs of being a bit bossy (yeah, mom, just like I was) and will reprimand the dogs when she sees them doing something we've told them (or her) not to. shoes please (pee or eeze) thank you (chank chew, tank koo) boy--Once when Theron was playing with Sylvie, he said "oh boy!" trying to get her excited about a particular toy. She then signed boy for the first time. wash hands potty *poop--small confession...this one we actually learned from Meet the Fockers She's actually begun to string signs together in 2-4 word sentences like: more milk banana please and just this morning we got: more time banana thank you Koko the gorilla would be so proud! Click here for an excellent site that has short video clips demonstrating all of the above signs plus a gazillion more. I highly recommend signing with your babies. And why stop when they can talk? I think it would by nice to keep it up...it never hurts to be bilingual! Although technically since sign is not spoken maybe it should be biling/manual? G-tube? We don't need no steenkin' g-tube! When we last saw Sylvie's GI, we were given the great and glorious news that she no longer thought it necessary for Sylvie to get a g-tube--insert bells, whistles, air horns, trumpeting elephants of joy, etc here. The doctor had gotten a hold of a growth chart specific to Noonan Syndrome and while Sylvie is only in the 3rd percentile for weight on the general chart, she's actually 50th percentile on the more appropriate chart. I think this helped drive home the fact to the GI that kids with this syndrome are just smaller, but not necessarily in a bad way. Since Sylvie is length/weight proportionate and developmentally on track in everything except for gross motor skills (which she is quickly closing the gap on; more on that later), the doctor saw no need to resort to surgery to try and increase her caloric intake. Another thing that I've noticed, along with my friend Marla (Sara's mom) and many other parents of Noonies is that they are ALL small, no matter how good or bad their appetite or whether or not they have feeding issues. Case in point: Sylvie and Sara are a month apart in age, with Sylvie being the elder. Despite the fact that Sylvie has consistently taken in many more calories on a regular basis than Sara, they are only about 1lb. apart in weight with Sara being the scale tipper! I've said it before and I'll probably say it again (because I suck at coming up with new material) but I think that a lot of the calories Sylvie takes in goes to her hair. Well, it's the only explanation I can come up with as to how she stays such a skinny minnie when she eats like a horse most of the time. Bleedin' good news On advice from our pediatrician, we'd had a series of blood tests done to check Sylvie for bleeding disorders which are commonly associated with Noonan Syndrome. Our most recent trip to a doctor's office ( I say 'a' instead of 'the' since she's has so many different ones) was with the Hematology department at Children's Hospital for follow up blood work because of an abnormal result in a platelet aggregation test, (not excess platelets as I had originally thought). The doctor was very nice and explained that all of the other tests had looked fine but they wanted to recheck this one thing to be on the safe side. Long story short, (yeah I know, too late) the follow up test was a-ok! Woo hoo! We'll still have to have her rechecked before any surgery, but we don't have to worry about adding a hematologist to her list of regular specialists for the time being, thank goodness. Sylvie's most recent measurements were taken at this appointment and she weighed in at 17# 2oz and was 28" long. (Either she shrunk an inch and a half since her 15 month appointment with her pediatrician or the nurse who measured her then was just reeeeaaly sloppy when she did it.) Poop, here it is On three separate occasions now I've gone in to Sylvie's room, hearing she's awoken from her nap, to find that she's decided to do a little exploring. In her diaper. Which was FULL OF POOP. She'd be sitting in her crib, proud as can be, murmuring in her sweetest voice and holding out a stinky little butt nugget for me to see. I guess I'm lucky that each time she's done it the poops have been nuggety and not squishy since that would have made the experiences all the more disgusting. Hopefully there will be no more visits from Mr. Hanky. Fun and Games Sylvie has learned a new game from her Thursday playgroup called Where oh where has gone? (basically, it's Peekaboo!) At playgroup, this game involves sitting in a circle and taking turns putting part of a mini parachute over one of the kid's heads while saying the "Where oh where?" chant, followed by the chosen kid pulling the material down to reveal him/herself while everyone else (read: playgroup leader and parents) exclaims, "Peekaboo!" Sylvie will play the "standard" way at home, hiding behind her bib/shirt/skirt while saying "way oo way" and then grinning hugely when she reveals herself to our peekaboo! chorus, but she has also extended the game to objects, handing us a ball or toy while saying "way oo way", indicating that we are to hide it so she can find it. Last week, I heard her saying her "way oo way" to her EI therapist during a session and when they were looking at a book with characters hidden behind panels that opened up on each page. Standing up, falling down She's VERY close to walking and is standing independently of longer and longer lengths of time. Ok, so those 'lengths of time' are less than a minute...but she IS getting better at it. She's finally gotten big enough to ride her little car from G'ma & G'pa Johnson, although she has yet to master turning corners with it. She loves to climb up slides and stairs. She also thinks she can go down stairs head first...as I found out about a week ago much to my horror. Theron volunteered to look after our friend's Sean & Amanda's pets while they are away on their honeymoon. We've got Sadie the dog at our place but stop by S& A's house every other day to check on their cats and fish tanks. Sylvie started off after one of the cats who decided to flee up stairs. I allowed Sylvie to follow with me close behind, making sure she was safe. Ha. We'd reached the top and the cat had disappeared into a room and Sylvie was gesturing after it and signing/ saying kitty over and over. Thinking she wanted to continue the chase, I started after the cat saying the "Where oh where is the kitty?" chant...thus committing the ultimate act of stupidity by NO LONGER BEING BETWEEN SYLVIE AND THE STAIRS. Of course, Sylvie decided it would be much more fun to go back downstairs and I wasn't able to catch her before she fell. I cannot even begin to say how horrifying it is to see your tiny baby fall end over end down stairs. I shrieked something like, "SYLVIE! OHMYGOD!" and Sylvie just shrieked. I ran down to Sylvie and scooped her up in my arms and I just held her...too frozen with shock and terror and guilt to check her for injury. Theron had come running having heard the thuds and the shrieking seeing us rocking halfway down the stairs immediately knew what had happened and very gently took our crying baby from me to see if she was hurt since I was clearly not in the any state to do so. Nothing appeared to be broken. In fact, she had not one bump, bruise or scrape from the fall. She was fine. She was fine. She was fine. My self confidence as a parent, however, will probably be in a full body cast for quite some time. I know it's one of those things that can happen on occasion, even to good parents, but that doesn't make it ok that I was careless. Thank-any-and-all-deities she wasn't hurt. So there you have it folks I came, I blogged, I confessed. Hopefully you will have seen that aside from the horrible-falling-down-stairs incident, things have been going exceedingly well with our wee girl in every respect. She continues to be of angelic demeanor about 99% of the time with only rare and brief flare-ups of temper, mostly due to frustration. She does get a little grumpy when we tell her no sometimes but so far we've not had any real tantrums. I am under no delusions that we'll be able to avoid them completely...I'm sure Tantrum Sylvie is there, lurking in the shadows, waiting to go all Vesuvius on us in the middle of a restaurant or mall or--heaven forbid--an airplane. But I'm getting ahead of things. Right now she is our little curly-headed-sweetheart-genius-baby. July pictures coming soon!

15 Month check-up

Sylvie had her 15 month pediatric appointment today and --Huzzah!-- all we heard was good news. Her currents measurements are 29.5" long and 16#10oz. which puts her in the 15th and 3rd percentiles for height and weight respectively. Dr. G was very pleased with her growth and also with her language skills which, according to her, are rather above average. Dr. G was then moved almost to tears (I kid you not) when after having apologized in advance for having to give Sylvie two shots, Sylvie hugged her and gave her a comforting pat on the back. (We didn't tell her that Sylvie almost always pats a person on the back when they hold her). Of course, poor Sylvie still screamed her head off when she got the shots, but she recovered quickly. The doctor said that based on Sylvie's current rate of growth length-wise, she would quite likely reach a final height of between 5'-5'5". If this proves to be the case, then I guess she won't be so "wee" after all!

May Sylvie update

Our gal is doing very well, in every way these days. She's crawling like a pro now and almost ready to start walking. She conitnues to add new words to her vocabulary, both vocal and sign, and has developed some very cute habits, such as: "talking on the phone"-- said phone being her playphone, a spoon, a toy, a doll or even her own fist. She will jabber away, quite aggressively, in a language that sounds like a cross between Russian and Klingon until she very sweetly says, "bye!" Trying to get her to talk on an actual phone when someone is on the other end is another story however as she would rather just push the buttons. "ticky,ticky"-- whenever we tickle Sylvie we have taken to saying "ticky, ticky" while doing it. She has adopted our habit and loves to poke us in the ribs or belly while saying "ticky, ticky!" "good doggy...I mean daddy"--sometimes Sylvie decided that we have been especially good parents and favors us with head pats. She'll gesture for Theron to bend his head toward her and she will pat it. Then she will do the same to me, and the cycle repeats numerous times. All the while she murmurs approvingly because we are such good doggies...I mean parents. "feed the parents"-- this actually started a few months back but I don't believe I've written about it yet. Sylvie likes to pretend to pinch off our moles (and in Theron's case chest hair) and then pretend to feed them to us. Sometimes she "snacks" on them herself. Disgustingly cute or cutely disgusting? You decide. Speaking of feeding, Sylvie has begun to catch up some on her weight gain. At her last appointment with her nutritionist, we learned that she had gained 2lbs in two months (yay!) and is now back on a growth curve, if still below the 5th percentile. We also saw her cardiologist this past week and he said that things looked the same as before so no immediate steps needed to be taken to address her heart defects. We go back to see him in a year for another checkup and to discuss plans for her surgery, which will probably be done sometime before she turns 5. He has assured us that the surgery is quite common these days so, while we're not thrilled with the prospect, we know that she needs to have it. Next week, Sylvie sees her pediatrician for her 15 month checkup and a week later, she'll see her GI again. I'm hoping that the GI will no longer see the need fot a gtube once she's seen how well Sylvie's been gaining weight on her own. Keep your fingers, toes, eyes...whatever you can cross, crossed!

A tooth! A tooth! Finally a tooth!

Sylvie has experienced two breakthroughs this month: 1) she can pull herself into a standing position and 2) her lower left central incisor! Ladies and gentlemen...she FINALLY HAS A TOOTH! And it looks as the the lower right central incisor will be popping through the gum any day now as well. Luckily, she's had no obvious discomfort while teething and I'm hoping that holds true for all the rest of the pearly-whites-to-be. As for the weaning, it has gone extremely smoothly for both of us. I had the one bad day early on and I finally went ahead and boobed Sylvie to ease the pressure. Then we went another couple of days without and I developed a sore spot on one side, (presumably a blocked duct), that I again relieved with nursing Sylvie. I coud tell though that my milk was just about gone. At this point, I'm pretty sure that the dairy has closed down until future child(ren). Bye bye, boobs....Thaaaaanks foooor the maaaamarieeees...hyuck, hyuck.

March update

A lot happened with Sylvie this past month: She turned one, travelled to Savannah for the first time where she finally got to meet her Uncle T, attended her first bridal tea and (extra-utero) baby shower, had her hair cut, started bah-ing when shown pictures of sheep, learned how to sit-up all by herself AND...she's started talking to us in a second language--well third if you count baby jabber--by signing! So far she knows the signs for "more" and "milk". Sylvie and pal S also had their first visit to the Children's Museum.

Sylvie's first haircut!!! (Before and After)

The peer-pressure became too great so today we jumped on the haircut bandwagon. Here are the results.

Just a quickie...

Yes, yes, I KNOW I've become less than regular with my blogging but any of you who have or have had small children probably know why. I promise a much longer post about our trip to Savannah for M's baby shower and J's bridal tea v. soon but right now all I have time for is a little bit of bragging about our baby girl. New skills she has aquired recently include: *spreading arms wide (or sometimes just one) in response to the question, "How big is Sylvie?" *pointing at herself in response to the question "Where's the baby?" *self feeding with spoon (see photos in post below) *having her blood drawn in a much more nonchalant and mature way than her mother was able to do until she was in her late teens. (She had a blood draw yesterday that lasted for a couple of minutes because they needed to take quite a bit of blood. She never cried once but only fussed impatiently at being restrained during the procedure. If I didn't know better I'd wonder if she were really my child since I am and always have been a big whiner about needles.)

She got skillz

Sylvie's first birthday!!!

Wow. Has it really been a whole year already? Has it really been 365 days since our wee one switched from quasi-amphibian to full on oxygen breather? Wow...just wow. Amazing to think how different she is now from when she first came into our lives, all blob-like and covered in cream cheese. Amazing to realize that so many of the feelings that I'd felt before her birth, and thought were the deepest most profound emotions one could have, were but ripples on the surface of what I realize I am capable of experiencing now. A couple of people I'll call "Stinky-Goo-Head" and "Slimy-Muck-Ball" (please know these are actually terms of great affection) have told me that I worry too much about Sylvie's various and sundry health issues. I don't agree; I think I worry about as much as your average new parent. However, I do probably harp on the more negative things health wise with Sylvie on this blog...mostly because I need to vent about them. And I'll admit that I've worried incessantly about Sylvie's growth and weight gain (or lack thereof) and I've filled sheet after sheet of paper with the details of Sylvie's diet, what she's eaten, how many calories she's taken in in a given day. I've worried about how she's yet to crawl or pull up or stand unassisted especially when I've been around other moms whose children, though a month or two younger than Sylvie, are 10 lbs heavier and toddling around like pros. I know that all kids develop differently and at their own rates, yet I've worried. But the other day, I was paging through What to Expect the First Year, something I do only rarely because it has so often fed my fears rather than soothed them and I happened to read the milestones for a kid her age and I gotta tell ya...she's above average on just about everything but the standing up thing. I've been afraid to be "that mom", ya know, the one who goes on and on about how gifted her kid is and such. Well, forget that, because I'm going to take this opportunity to puff up with mommy pride and relate to you all of the things our Sylvie is doing. She speaks! momma, daddy, kitty, doggy, Izzy, booby (and yes it means she wants mama juice), hi and bye (with a wave!) and mmm! (which doubles for "I'm hungry" and "that looks tasty can I try some?") Sylvie the Action Figure! clapping, pointing, "conducting", "singing" and bouncing to music, can roll a ball back and forth to us, plays peekabo, stacks/unstacks rings, recognizes people in photos AND she's finally started pulling up into a standing position with a little help from Theron and I. She's just incredible, our girl. Everyday she grows more and more amazing and beautiful and...wow. Just wow. Happy birthday baby! Love, mommy and daddy.

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!

On The Worst Day of Christmas

On the worst day of Christmas my true love, his mom and me, took Sylvie to the ER where she got an IV. On the worst day after Christmas my true love, his mom and me, took Sylvie back to the ER for another IV... ...and an overnight stay at the hospital. Obviously things are better now or I wouldn't be making light of the situation, but at the time it was a no good, very bad, TERRIBLE Christmas night AND night after. WARNING: some uncomfortable medical procedures and other TMI will appear in the following recount. On Christmas eve, Sylvie was not overly interested in eating and ended up regurgitating her dinner. The following morning she upchucked after breastfeeding, but managed to keep down a bit of cereal with fruit but was somewhat listless during the opening of presents. In the early afternoon she started crying for no discernible reason until she finally fell asleep. We figured she'd feel better after she slept and so Theron took his mom, brother and his brother's wife for a drive to see the quintessential New England town of Marblehead. Meanwhile, back at the Wallis dwelling, I was trying my best to comfort Sylvie who had woken from her long sleep still fussy and as a bonus, feverish. I got a reading of 100.2 using the armpit method which is supposedly as much as a degree or two below the actual temp, so I was a bit freaked. I consulted What to Expect the First Year and then called up my mom for her opinion and both she and the book suggested that an ear infection was the likely culprit. Since I had also noted that Sylvie's diapers had not been wetted at her usual frquency, I called Sylvie's pediatrician's after hours office line and ended up talking to an on call nurse. I related the symptoms and she told me that it was probably a good idea to get Sylvie to the ER to check for dehydration. I called up Theron on his cell and it turns out they were on their way back and just around the corner buying movie tickets for C and L to see a show later that evening. As soon as they got home, we packed up to go to Children's Hospital and after making sure C and L had the bus schedules to get the to and from the movies, the rest of us got on the road. We arived at the hospital around 7ish. The ER rooms were full at that time so another section of the hospital on another floor had to be opened up for us overflow patients. Sylvie had a pretty thorough exam and nothing was showing up as the cause for her misery. Her ears looked fine, so no ear infection. Another very common infection in her age group which causes symptoms such as Sylvie was displaying is a urinary tract infection. This brings us to the the first of several medical-procedures-that-you-hope-never-need-to-be-performed-on-your-infant-daughter-especially-on-Christmas: a urinary catheter was briefly inserted so that they could collect a sample, which was clear and did not bear any obvious signs of infection. This was confirmed after the sample was tested but it was also noted that her urine contained elevated ketone levels, a sign of dehydration. As if our yuletide cheer could take anymore of a beating, blood work and an IV were ordered. It was beyond heartbreaking to see our baby girl screaming while the nurse and her assistant tried and failed THREE times to get the needle in. Her veins are so tiny and the dehydration advanced enough that the veins kept "rolling" (I think that was the term they used). I'd been by Sylvie's head trying to comfort her while they searched for a vein but at one point I had to leave the room because I began sobbing. Linda came out with me and held me while Theron stayed with Sylvie. They finally had an IV specialist do it but it still took her TWO MORE tries to get it in. If you're counting, and I certainly was, that means she had FIVE pokes. And they weren't quick pokes either. I'd pulled myself together enough to stay with Theron by Sylvie for the final jabs, the two of us doing our best to calm her but feeling just so helpless and ineffectual. Finally, they had the blood samples and the IV going and then began the search to find the cause of her illness. We were told it would take around 24 hrs for the lab results to come back. The attending pediatrician felt some small lumps in Sylvie's bowel and said "It's probably fecal matter, but I'm ordering an x-ray to be certain." Sylvie had to be woken from her exhausted sleep for this and though she expressed her discomfort and fear quite loudly, at least we knew this procedure didn't really hurt. Wearing the requisite lead apron, Theron held her in place for the two xrays, then cuddled her back to sleep as soon as it was over and luckily, the xrays confirmed the suspicion that the mystery lumps were in fact poop. The IV had been in place for several hours, longer than would usually be the case but the attending Pediatrician was concerned about giving Sylvie fluids too quickly in case her heart was unable to handle it. We were given the option to admit her overnight so they could completely "tank her up" or to take her home and give her fluids the ourselves; as she was acting much more like her old self, cheerfully babbling away and waving at everyone and everything, we decided to go home and do our best to get fluids into Sylvie ourselves the next day. (Well, really later that same day since it was 3:30 am when we finally left the hospital.) The doctor told us that if we grew concerned about Sylvie for any reason that we should bring her right back to the ER. A nurse came to remove the IV which very distressingly caused blood to squirt from the back of Sylvie's hand and onto my own as I was helping to hold her still. Yet another experience from the whole ordeal that I hope to God is never repeated. So exhausted, but glad that nothing majorly wrong had been discovered and that Sylvie seemed to be back to her old self, we headed home. Big mistake. Theron, L, Sylvie and I were all very worn out from our long, harrowing evening and slept in. Chad and Lindsey left before any of us woke up in order to hop a bus into town in hopes of squeezing in a few more hours of sight seeing before their flight home. They had left their luggage behind having prearranged for Theron to bring it when he picked them up from their walkabout to take them to the airport. I breast fed Sylvie as soon as she was up but when I put her in her highchair to try an feed her a little cereal and fruit as well, she threw it up. We cleaned her up and coaxed her into taking a tiny bit of cereal but any time we offered her water or juice or pedialyte, whether in a bottle or a sippy cup, she pushed it away. All through the day we did our best to get small amounts of food and liquid into Sylvie but the only thing she would take with any real enthusiasm was breastmilk. Theron returned home and decided to whip up a batch of his excellent chili for us to have for dinner. Dinner had only just been served when suddenly Sylvie had a massive bout of diarrhea. L was kind enough to wash out her poopy clothes while Theron bathed a very unhappy baby. She was acting very lethargic and we were extremely concerned about her hydration becoming dangerously depleted once again. I had previously discovered by accident that Sylvie liked to drink water squeezed out of a washcloth while she was in her bath so I I tried it using some fresh water in a cup and she drank it almost eagerly. I then poured some pedialyte into a cup and was able to get a decent amount into her that way although there was no way to measure exactly how much fluid she was getting. We got her dried off, dressed and into the car as fast as we could and headed back the hospital, arrivng almost exactly 24 hours after we'd arrived the first time. This time, they didn't check her urine but they did receive a fesh stool sample shortly after we arrived and the current attending pedaitrician (different from the previous nights attending) smeared a bit onto a card to see if it would test positive for blood. It did. However, he did not seem overly concerned about this as there was no obvious blood in the stool and its not uncommon for trace amounts of blood to be present due to anal fissures and such if one has been constipated and straining to poop (and Sylvie had been constipated...remember the xray of poop?) The doctor even said that a false positive could be caused by having eaten things such as beets, but we knew that wasn't the case. Although he wasn't very concerned, the doctor decided that Sylvie should have a couple more xrays and an ultrasound to check her bowels..plus more blood work and another IV. Once again, getting those last two procedures completed took a nightmarishly long time, requiring 4 MORE needle jabs. After the third try by one nurse, another nurse came in to make the attempt. He asked us if we'd prefer it to be in her hand or her foot and I just said, '"PLEASE JUST GET IT IN," and, thank god, he got it on his first try. By this time, Sylvie had been poked with a needle in the backs of both hands, the crooks of both elbows and in the tops of both feet, so the poor baby had prick marks and bruises all over the place. The new xrays and the ultrasound looked just fine and finally, Sylvie was diagnosed as having gastroenteritis. In Sylvie's case it was no big deal really but it's the kind of thing that generally just has to run it's course. The only thing the doctor prescribed was the IV to get Sylvie fully hydrated, but to be on the safe side, she was admitted for observation and to see if her latest lab results showed anything. It was again, very late (or very early depending on how you look at it) by this time and it was decided that I would spend the night with Sylvie at the hospital and Theron and Linda would head back home. Theron was scheduled to work the next day but said he'd call in late so he could swing by to check on his wee girl and to drop Linda off to stay with us until Sylvie was (hopefully) released. Sylvie and I both slept pretty well even with nurses coming in periodically to check her vitals and the next morning she was acting very much like her old self once again. One more blood test had to be taken unfortunately (That's 10, count 'em 10 needles in 2 days) but wonder of wonders, the lab tech got it in just one go. Theron called to see if I needed him to bring anything and to say that his workplace had told him that under the circumstances, he shouldn't worry about coming in that day so he and Linda would both be coming soon. They arrived shortly thereafter and t wasn't long before the current attending pediatrician (yet another doctor) came in to tell us that all the labs came back normal and that Sylvie should be fully rehydrated and we could take her home as soon as the IV had been removed, HURRAY! I'm sure there are details I've neglected to mention and some of the things that I said happened on the first night probably happened on the second and vice versa, but that's the gist of it. Sylvie was sick a couple more times at home but slowly began to take fluids and food again and is now almost back to her usual intake of both. I'd say she's 99.9% better as of today. However, it'll probably be some time before Theron, L or I fully recover from the whole thing!