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!