Wednesday, December 07, 2005

Rule #1: Don't let the small stuff get you down

Thanks everyone for being so supportive. I think it was just that everything had kind of built up and I had a mini breakdown. I know that Sylvie's issues are not big deals at all and we're doing everything we can to address what needs to be addressed. So she's small. So what?

Happy news: Sylvie has become a lean, mean (well, sweet actually) waving machine. She waves at stangers in stores and on buses. She waves at Theron and I. She waves at the cat, the dog, the Christmas tree and even the radio. She even sounds like shes saying "Hi!" in her cute Pebbles Flintstone's voice while doing it!

Can I hear you say "Awwwwww!"?

Tuesday, December 06, 2005

The good news and the not so good news

Sylvie had two doctor's appointments yesterday; one to see about the helmet and the other was her 9 month check-up. The good news is that Sylvie will now only has to wear her helmet for one more month and just overnight and during naps. Yay!

The not so good news is that her growth, already slow to begin with, appears to be plateauing. As of yesterday she weighs 13lbs 13oz and measures 25.5". She's wearing 3-6 month size clothes and stage 1 diapers, (although she'll probably be in stage 2 soon since they are for 14lbs+). Her pediatrician is concerned enough to want Sylvie to see a nutritionist (to teach us how to provide extra calories) and a gastroenterologist (to see if she is possibly having problems absorbing nutrients) and maybe down the road an endocronologist (who would check her gorwth hormone levels). Hearing this really upset me, even though I know that failure to thrive (such a HORRIBLE phrase) is often associated with Noonan Syndrome*. I feel like we are doing something wrong, like not feeding her enough. But she eats! A lot! She gets solids 3-4 times a day plus as much boob juice as she wants! She has yet to reject a single food we've offered her and she is VERY interested in whatever we happen to be eating. The girl loves food. But for some reason, she's just not growing like she should. On the upside, her pediatrician did note that Sylvie is very social and her babbling is indicative of normal intelligence, which lessens some of the other potential concerns associated with Noonan Syndrome.

One other thing which isn't really all that bad but it's not good either is that Sylvie is also a little behind in her gross motor skills**. I've contacted Early Intervention to set up an assessment for her and if necessary they should create a program of therapy to help get her back on track in that regard.

I keep telling myself that we are lucky that Sylvie's issues are not bad at all, a fact that is driven home to me every time I take her to one of her doctors at Children's Hospital where we see so many kids with far worse problems. She's a very happy, inquisitive, content kid. And for that I am so very, very thankful.

*We still haven't had a definite diagnosis on whether or not she has Noonan, and we may never know for sure. It's one of those things that can't always be tested for. She had some blood drawn at her last appointment with the geneticist to screen for a particular mutation that is known to cause Noonan Syndrome but the thing is that only about 50% of kids thought to have Noonan carry this mutation.

**Meaning she's not yet sitting up or trying to pull up to a standing position as is typical for babies her age. However, her fine motor skills, such as picking up a cheerio between her thumb and forefinger and putting it her mouth appear to be, well, fine.

Thursday, December 01, 2005

Another reason why self-tanning baby lotion is really unneccesary (as if you needed another reason)

Yesterday, while at Sylvie's Cardiology appointment*, the doctor took one look at her and said, "She sure likes her sweet potatoes, doesn't she?"

Sadly, I've been waiting to hear a comment like that. No, it wasn't because I'd brought her to the appointment still smeared with remnants of her last meal...I may let my baby roll off of a couch, but I DO clean her up before taking her out into public.

No, the truth is that Sylvie has a condition called Carotenemia or Carotenodermia. There's no need to panic though because it just means that her skin has an orange cast because she eats alot of foods that are high in beta carotene, found in orange vegetables like carrots or sweet potatoes. Baby food manufactureres seem to try to induce this condition because just about everything in those little baby food jars contains an orange vegetable. The main ingredient for chicken and rice? Carrots. For turkey and rice? Sweet potatoes. For vegetables and chicken? Carrots. And if, like us, you try to save a little money and buy bulk packs of veggies or dinners, most of the jars contain orange food items as the main ingredient. The veggie pack contains peas, butternut squash, sweet potatoes and carrots. The dinner pack contains chicken and rice, turkey and rice, turkey and sweet potatoes and macaroni beef. 8 out of those 11 different types of baby food are primarily carrots or sweet potatoes.

Frankly, I'm amazed she isn't as orange as an Oompa-Loopa by now.

*Because of Sylvie's two minor heart defects, she sees a cardiologist every 6 months. She had a brief electrocardiogram (heart monitor thingie) and an echocardiagram (ultrasound on the heart) and both showed no problems. Yay! We've been told that she will most likely require heart surgery in a few years because the defects she has can become problematic later in life, but the doctor said that with the current surgical techniques her hospital stay would be less than a week and probably only about 3 weeks till full recovery. Sounds about as bad as the appendectomy I had when I was 14!