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.

4 comments:

Chloe said...

Sorry to hear that Space Baby's growth hasn't picked up the way we would have liked. But she's definitely got a Buchanan appetite and she's a smart little girl to boot.

I'm sure at least one of the specialists you'll be consulting will be able to figure out what's causing her wee-ness and treat the problem. I'm also sure that it's nothing you guys are doing that's causing this. Babies are all different and grow/develop at different rates.

As far as motor skills go I was (and arguably still am) a bit delayed in that department myself. It kept me out of kindergarten for an extra year while I worked with OT specialists who taught me how to do things like skip and gallop properly. It took an extra year or two to learn to tie my shoes and ride a bike without training wheels. But in the long run I turned out pretty normal. (Right? RIGHT???)

And on the bright side, Sylvie can keep wearing her cute 3-6 month outfits for a little while longer. Maybe for Christmas we'll get her some fabulous threads in the 6-9 month range to inspire her continued growth. Do they make infant pleather?

Manda said...

Don't know about Pleather but Travis and I saw a onesie on the today show that said "No one puts baby in a corner"

We both want to get one for our kid....maybe we'll get one for the Shpace baby!!

Robyn said...

Sylvie certainly sounds related to all of us. According to my Dad I was incredibly wee for a very loooong time. I supposedly looked newborn sized when I learned how to walk.

Both Chuck and Mike had to go to therapy sessions as little kids....poor Charlie was a drooler. Ask him. Heh heh. But had to work on his motor skills and he ended up being quite the athlete.

Anyway, we all turned out fairly normal. I'm still on the short side, but then so are many other people I work with.

Regardless of how things may be, you've a beautiful child who's lucky to have parents like you and Theron.

River mom said...

Paige, You sure have loving and wonderful relations don't you? I am sitting here typing in tears. Thank you all for being so supportive and I agree with you all. This can and will be handled and Sylve will be a Bright, small
statured, big appetited, Buchanan tree kiddo! Love you all G'ma J