Annie on the run....

ANNIE WINS BABY CONTEST!

....for "baldest baby girl" Hooray for Annie!

Is she....

WALKING YET?

Yes.

Annie walks.

09.01.10

Up until this Wednesday, Annie would take a step here, or there, but nothing we could consider truly walking on her own. But on Wednesday afternoon, Annie and I took our usual afternoon stroll up and down our block. Sometimes we take a push toy, sometimes Annie just holds my hand, sometimes we wear shoes, often we do not. Maybe it was because she was walking downhill a bit? Maybe it was the new, cheap, shoes from Walmart? Whatever it was, it was magic...

Those first steps are supposed to be so amazing, I've often thought I would do cartwheels when she took them. But the more I thought about it, the more I realized, it wasn't that big of a deal. Oh but it was. It wasn't the steps themselves that were so incredible. It was the look on her face as she stood alone, shaky, terrified and looking around for something to hold onto. Completely capable of not only standing alone, but probably running down the street if she had the confidence to do so. But yet, there she was, lower lip out, ready to pout. She wanted so badly to plop down and whimper as she so often does. But not this time! She stuck that lower lip out a little farther, waved her arms around as if to test her balance, and then toddled on down the five or six steps it was to get to me. Annie doesn't hug (she doesn't have time for such things) but as she toddled, she held her arms out, sped up, and threw her little arms around my neck. She was no longer pouting, but grinning and giggling.

She's been testing those walking legs a few times a day since. I love setting her somewhere and running ahead, so that she'll come wobbling towards me, arms outstretched, ready to give me another proud hug.

http://s708.photobucket.com/albums/ww86/MeekFam/?action=view¤t=zootripandanniewalks2-1.mp4

Nature girl

So much for teaching Annie about nature, she's a natural! She can't get enough of the grass, dirt, leaves, anything she can find to explore. We've spent quite a bit of time outdoors the past few days - and enjoyed every bit of it.

Ernie's celebrity status & Annie's recent play date...

Annie thought her new Ernie pal was pretty cool...

THEN...we borrowed one of Ernie's movies from the library, now she knows he's a celebrity!

Annie & Ava spent some quality time together.

Annie and Ava watching "Your Baby Can Read"

Play date at the park with Maddy, Grant & Annie

No E.I. for us...for now....

Well, life has been handing us some excitement lately. Some blog worthy, some not so blog appropriate -- today's big news: Annie doesn't need "early intervention".

We've recently gone through a series of meetings and evaluations with the county to assess Annie's developments thus far. After meeting with our coordinator, a speech therapist, a developmental therapist and a nutritionist -- it has been determined that our kid is "normal". As a mater of fact, if it weren't for galactosemia (which automatically qualifies her for such intervention) we wouldn't qualify for "assistance".

We've been given a novel on Annie's assessment, but here's a snippet of the summary, and I quote:

"Clinical Narrative of Developmental Domains Evaluated (Summary):
Annabelle is a happy girl who is using babbling, laughing, whining, crying and single words to communicate her needs and wants. Her strengths are that she is a happy child, she appears to like adult and child interactions and displays age appropriate oral motor skills. She displays age appropriate receptive (hearing/understanding), expressive speaking/talking) language and phonological/articulation skills at this time.

Further assessments recommended: None at this time."

I'm not sure how this makes me feel. Part of me is thrilled to hear "happy girl" and "displays age appropriate..." -- and yet, a part of me reads this and thinks...wow - we needed a team of strangers to come into our home and tell us this? (Which by the way, all the of the "strangers" were very kind and very helpful.) But THIS is a complication of galactosemia not covered in the guide book. The complication of distrust in ourselves as parents and raising our children under medical and developmental microscopes.

I'm relieved that "at this time", we don't need to add a developmental therapist, speech therapist and nutritionist to Annie's pediatrician, geneticist, dietitian, genetic counselor, pediatric opthomologist (and additional geneticist and dietitian we intend to start seeing in Boston come October). One less appointment on our calendar sounds good to me. And although it's sad that I needed this evaluation to feel comfortable about Annie's progress - it's great to have someone from the outside come in and say "no, really, your kid is fine." So as ashamed as I am, for not knowing, with confidence, these things myself....I'll have her re-evaluated in 6 months, with hopes of the same reassurance.

But for now, we can coast....and just enjoy the ride for a while. :)

13 months and the new toy box...

Annie officially has the first year underway - hard to believe this time last year I could set her on the dining room table and know she wasn't going anywhere. Yesterday I caught her with a mouthful of cat food (it was just a matter of time, I spend most of my day saying "Annie, NO, leave kitty's food alone"... and she laughs at me -- so time to think of a new arrangement for feeding the cats).

Daddy has made Annie a huge, beautiful new toy box that she is sure to love for years to come. She's already told us there seems to be more room for toys in there...

Annie is keeping me too busy to keep up with the blog these days -- here are a few of the weeks highlights:

Unraveling toilet paper rolls....

I'd rather smell my foot than eat this carrot...

...no, really, I would...

I love Ava!

...been busy parallel parking.

The Giant Rubber Duck

Talk about little things putting a smile on your face (or I guess in this case, big things...) We found this giant rubber ducky at the zoo this weekend. I can't help but giggle every time I see it.

1st PGC Conference

We're back from our first PGC Conference -- we visited lovely Minnesota (which was far more lovely than I had anticipated ;) We met lots of wonderful people for the first time, some for the first time in person finally, and we reconnected with our usual bunch that we rely on so much. We were fortunate enough to have both Granny's accompany us - to take care of Annie while we soaked up as much info as possible in the sessions.

And did we soak up the info! It was nice to finally be in a room full of people...all who were aware of galactosemia and just as concerned as we were. It was also very, very hard. Here we are, in a room full of "experts" -- and yet, no one can agree on diet, no one can tell us with certainty what foods are safe and what are not, and more importantly, none of the "experts" are even sure diet restrictions are even improving the outcomes of galactosemics.

So you've told us our child is galactosemic. You've told us the only "treatment" is to make sure she has a diet low in galactose. You've given us a list of foods that are "safe", "questionable", and "forbidden"...and told us to relax and use our best judgement. (Those of you who know me, know Momma doesn't "relax" very well....particularly in this situation.)

We also learned that the "experts" are starting to think strict diets aren't exactly creating better outcomes for galactosemics. (ie. what "damage" is done, is already done...possibly in utero, so diet, aside from seriously high galactose foods, is of little consequence). SO...now the one "treatment" that I've been tearing my hair out trying to follow (strict diet), is now, "not necessarily helping" -- and they feel we should relax our diet restrictions. But, they're not sure, not exactly sure...we need more research...so in the mean time...do what you think is best...what makes you comfortable.

Momma is anything but comfortable.

I would have to say the conference was a real eye opener...to all that we don't know. It's terribly frustrating, as all we want to do, is what's best for Annie. It's very hard, to not know what's best for your baby.

On a sunnier note! Life does go on! After the conference was over, we were able to get out of our hotel and do a little sight seeing -- we had a gorgeous day to wander Minneapolis and truly enjoyed the chance to have some fun.

Most of our PGC Midwest group :)

Minnehaha Falls

The Cherry

Annie walkin with a little bit of help.