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.

MORE good news!

What a difference a year makes! We're finally getting a string of GOOD news! First no glasses and now, Annie's new Gal-1-p is (drum roll please):

3.4

This makes Annie officially a "treated galactosemic". Now we'll struggle to stay here, but it feels good to be under four. We've gone from: 35.8, to 15.8, to 7.0, to 5.8, to 4.2, to 6.1 and now....a lovely 3.4

Annie parties....

Mommy, Annie, Carter & Alyshia

Avery & Annie sharing very nicely.

Grandpa Fitz gets Annie some birthday cake.

Annie the morning after her party opening presents!

Ah...Annie's party. I have to admit, the whole ordeal has been my life for the past few weeks. I'd chalk it right up there with wedding planning now that I've done both. I've never put on a big party and made every morsel for it from scratch -- it was a learning experience. And I'm glad to say I can do it... ;)

We are so grateful to everyone who came out to celebrate with us! Sorry for the heat...but sharing a July birthday with Annie, I know that's just par for the course! We enjoyed visiting with everyone, and regret not being able to spend more time with each of you. It was so fun to watch all of the kids having a great time together in the little pools and with each other. Thank you thank you.

Annie opened her gifts the morning after her party. It took us all morning! You're all way too generous. She received so many wonderful things and we are so appreciative.

Next stop for the Meek Family? PGC Conference in Minneapolis. We're anxious to meet some new families and hopefully gain a lot of knowledge to keep Annabelle happy and healthy.

365 Days of Annie....

It's going to be a busy blog week...first Carter's party, then Annie's great news at the eye doctor -- and here I sit in the wee hours of the morning on Annabelle's FIRST BIRTHDAY! (I'm not staying up to blog (although I feel sappy enough that I could have) I'm waiting on some cupcakes and other various goodies.) So, lets see, this time last year, I was in labor. I had a hospital bag packed with one boy outfit and one girl outfit....and while we were anxiously awaiting which one we would need I was seriously starting to reconsider "natural childbirth". I've learned so much this year, the first of which, love and honor thy husband....and completely ignore his wishes on the birthing process. Next time, epidural...asap.

But that's not at all what I'm thinking about today. I'm thinking back on the first moments we saw Annabelle, and that's who she was, Annabelle June...tiny baby, LOUD baby, with squinty eyes and a head full of dark hair. The way I felt so awkward holding her and yet, I knew she felt just as awkward being on the outside...nothing was the same for her, just as it wasn't for me. Well, there we go, something in common already :) I wasn't immediately confident as a mother, but I was certainly confident that we were going to figure all of this out together. Now I would bet one of her favorite places is snuggled in our arms...and I can, without a doubt, say that I feel empty if I go a few hours without holding her. So much for awkward beginnings.

I stayed up through labor (which was overnight for us), I stayed up all the next day (staring at our new baby), and I pretty much stayed up the day after that...probably 72 hours of Momma-bliss with no sleep. I really don't remember sleeping at all...until sometime maybe in October ;) I know people would say, "can you believe how fast time is going"?...and quite honestly, every day last year up until Christmas felt like it was still July 14th. When you become a mother, you hit the ground running, no part time, no half days, and certainly very few coffee breaks ;)

And oh, the health issues. Galcto-what? Oh, Galactosemia...right, I'll google that in just a minute. We need to see a geneticist? And a genetic counselor? Along with a dietitian? Ok. I remember that Friday, Jeremy was scribbling down galactosemia on a scrap of paper, and said, "Annie needs soy formula"? At that time, we switched her to the soy, but full out expected whatever tests showed she was "galactosemic" were certainly false positives. After all, like Great Grandma Fitzpatrick says, "in this family, we eat anything that doesn't eat us"! Surely our baby will have a lifetime full of cheesy potatoes and ice cream cones. I remember actually chuckling at the thought of life any other way.

Of course the chuckling ended, Annie's tests continued to show this wasn't a fluke. Annie is galactosemic. I crumbled at the news (and I'd like to think I don't crumble much.) I had already read the worst of the worst...brain damage, liver failure, learning disabilities, speech difficulties...I began to look down at Annie and wonder what her life would be like. It was all so foreign to me, the diet, the complications, I honestly expected that she'd never walk, never talk, never smile. More often than I'd like to admit I just held her and cried. Cried about her future, cried about her diet, her restrictions, her challenges...

And what did Annie do?

She grew.
She ate like a champ and she grew some more.
She started smiling.
Then she started giggling.
She rolled over.
She sat up.
She started solid foods.
She grew some more.
She started babbling.
She wiggled back and forth on her knees for a few weeks...
and then she crawled.
She got some teeth.
She started feeding herself snacks.
She started recognizing pictures in books.
She gives high fives.
She claps.
She chases kitten around the house and pulls out his fur. (good kitten).

That's what Annie does. I worry. She lives. She explores and learns. She's having a good ol' time, and it's starting to catch on.

I know I'll never stop worrying, that's what all mother's do. But in one short year, Annie has taught me more about life than I could have ever learned in my first 30. I know we'll have our good days and our bad. I know there are challenges ahead that we can't imagine today. But I also know that there are fabulous moments in each day - and my new job is to make sure I don't miss them.

First 1st birtday present!

Trip to the park!

Big girl lunch!

First flower delivery, just for Annie!

(believe it or not, she gobbled up some zuchinni earlier in the day faster than she ate this cupcake)

Year one: done!

Hallelujah!

Sometimes, a little good news goes a long way. Annie had her one year appointment with the eye doctor to further check on her vision and her hemangioma that is interfering with her vision. At her last visit we found that her "bad eye" was slightly improving and her prescription was lowered in her glasses. I had a teeny tiny hope going in today (and I was dreamin'!) that we'd come out without glasses and everything would be fine. But of course I've learned to expect the worst, and be pleasantly surprised by anything else. Well....it turns out, Annie's vision in her bad eye has AGAIN improved...and so much so that the Doctor has decided that it's not enough to warrant glasses! I about fell over. I'm sorry, did you say she DOESN'T NEED TO WEAR THE GLASSES? Yes, that's correct, at this time, she doesn't need to wear her glasses. We need to continue patching the "good" eye for an hour a day. But at least from now until the next appointment in November -- NO GLASSES.

Now, I realize, glasses aren't THAT big of a deal. But it's just on top of what seems like a long list of health issues to begin with, so I feel like it's a HUGE victory for us. One less thing to remember and one less thing for Annie to throw on the floor and beat me to saying "no no no".

And all this, less than two days from Annie's big first birthday.

Hallelujah!

Big room, big chair...little baby!

Let's do this already!

Happy Birthday Carter ol' buddy ;)

Annie attends her first 1st birthday party! Happy Birthday to cousin Carter...

Annie & Carter with the Granny's

Annie's first 4th of July!

It doesn't seem possible that June has flown by, we're already into the middle of summer...and our little Annie is just day's away from the big first birthday! We've been having a great time. Enjoying the sunshine, doing lots of swimming and boating, traveling and visiting...constantly on the go! Annabelle has just started walking holding on with one hand, up until recently she had to be hanging on to our hands with both of hers. She's still pretty wobbly, but I can see the light bulb starting to flicker in that cute little head of hers..."hmmm...this might be a better way to get around" ;)

We're about a week away from a slew of 1-year doctor appointments. We'll get a new Gal-1-p number from the geneticist soon, the 1 year shots from the pediatrician, a visit to the eye doctor (cross your fingers her eyes are getting better!). And we are a little over two weeks from our family trip to the PGC Conference - we're all looking forward to meeting so many of the families who have been so helpful to us this first year!