Great Grandma Metzka & Annie having lunch
Annie (8mo) with the Easter Bunny3.27.2010
3.21.2010
Twenty six thousand dollars....
You did it Mom!(Grant, and Mommy, Denise)
The hard work has paid off....
Somewhere in the ballpark of....
26,000 dollars
...they're still counting extra pennies.
We' couldn't be more thankful. We couldn't be more blessed. Those of you who supported us by running, walking, eating, drinking, donating, bidding, praying, listening, hugging and countless other ways - thank you so much. Anything we can do for Annie and friends regarding their health is always worth every bit of effort. But what a reward to have made such a difference. The Grant's Wish Fundraiser is over, and it was good....it was very, very good.
XOXO
Momma, Dad & Annie (Annie's first 5k!)
Annie enjoying the big day
Grandpa Meek, Dad & Annie partyin' for Grant's Wish
Annie & Avery with their Momma's
Aunt Shannon with Annie & Avery with her Daddy
Grant with Annie's Grandpa Fitzpatrick3.19.2010
This is it! This weekend! Grant's Wish!
I've been posting for months about the Grant's Wish Fundraiser -- this weekend, the event is finally here!
Please join us to raise money furthering Galactosemia Research:
Grant's Wish - Wilmington, IL
5k Run/Walk in the morning
Dinner/Dance/Silent Auction in the evening
More details at www.pgcmidwest.com
Annie's gonna be there!
3.17.2010
Annie's latest Gal-1-P
Annie's latest blood test shows that she is now at 4.2 (Gal-1-Phosphate, in normal terms, this measures how much galactose is still built up in her body...non-galactosemics are a 0 (zero)...Annie and other galactosemics are considered "treated galactosemics" when their numbers are 4 and under.)
We're SO close to 4 (although, I'd be more comfortable around a 2...let's over achieve :)
4.2 - at 8 months
5.8 - at 5 months
7.0 - at 3 months
15.8 - at 2 months
35.8 - at birth
This is excellent news...as we were warned that with the introduction of solids, sometimes the numbers can stop improving for a while. So...we can relax (for a second) ... and add a few more new foods :)
We're SO close to 4 (although, I'd be more comfortable around a 2...let's over achieve :)
4.2 - at 8 months
5.8 - at 5 months
7.0 - at 3 months
15.8 - at 2 months
35.8 - at birth
This is excellent news...as we were warned that with the introduction of solids, sometimes the numbers can stop improving for a while. So...we can relax (for a second) ... and add a few more new foods :)
3.16.2010
Research
Galactosemia research has very little funding.
We can put people on the moon, build bridges, transplant lungs...we're pretty sure we can help galactosemics live a better life with some aggressive funding.
Just a few more days till GRANT'S WISH - register to run, register to walk, register to eat, drink, and be merry, browse the online silent auction, or just make a donation.
www.pgcmidwest.com
We can put people on the moon, build bridges, transplant lungs...we're pretty sure we can help galactosemics live a better life with some aggressive funding.
Just a few more days till GRANT'S WISH - register to run, register to walk, register to eat, drink, and be merry, browse the online silent auction, or just make a donation.
www.pgcmidwest.com
3.14.2010
Happy 8 Months Annie!
Ready to celebrate St. Paddy's Day!
Carter & Annie
We're on the move! Annie crawls, started cutting her first tooth and has fed herself some snacks -- all in one afternoon! Growing up SO fast! We're enjoying spring, looking forward to some Cubs games soon, and excited for the Grant's Wish Funraiser this weekend - looking forward to seeing so many of you there!
3.12.2010
Help Annie raise funds, and have a great time!
Annie's says:
COME TO MY PARTY!
Grant's Wish Fundraiser
March 20th
Support Galactosemia Research, have a good time!
(Click on link to the right for registration and more details!)
3.10.2010
We've got a winner!
I don’t usually utilize this public forum of sorts to hop up on a soapbox. My intentions are to share Annie info and photos with friend’s and family thirsty for chubby cheeks and updates. However, last night I had an experience that has compelled me to ramble it a bit. How about I set the scene and then spout off?
(I ran into an acquaintance in passing….)
Acquaintance: Hey there, how are ya?
Me: Great, thanks, and you?
Acquaintance: Not bad, how’s that baby?
Me: Doing really well.
Acquaintance: How old is she now, I can never remember these things?
Me: Just about 8 months, we’re working on getting some teeth and she’s been starting to try and crawl--
Acquaintance: (Gets a serious look) So, is she a winner? A keeper?
Me: (confused?) Of course! She’s such a sweet girl, I can’t believe how fast she’s growing--
Acquaintance: Well good to hear it, so many of these kids these days have problems, and “they” will tell you things like Downs are a “blessing”, but that ain’t no blessing, no problems are….glad to hear you’ve got a winner…
Me: ….well, we’re not without our problems, but Annie is certainly a “winner” (all of this went unheard as Acquaintance was still mumbling about)…
Now I consider myself pretty outspoken, and I certainly have the ability to be insensitive at times (unintentionally of course). But it really caught me off guard that someone would go out of their way (note genetic disorders were not even the topic of our brief conversation?) to make sure I knew, that a “healthy” baby, was desirable. Obviously this was a rare, isolated incident - and obviously the insensitive comments were made without knowing much about me, or Annabelle.
But it did make me think…and stew…and wonder if that’s how most people look at things? I mean really? Let’s be honest here…there’s not a moment of the day that I sit and think, golly, galactosemia is such a blessing. I’m so blessed that we can spell galactosemia, I’m so blessed that Annie will be following a strict diet for life, and that she may have challenges ahead of her that we can’t even imagine right now. If only everyone could experience such a blessing…those of you without galactosemia in your lives are really missing out.
Of course not.
But would I trade a galactosemia-free life for toothless grins? Have you heard my Annie giggle? Nobody is perfect. Annie has ten fingers and ten toes. She has her sight. She has her hearing. There are SO many things that can go wrong with us, what’s a little galactosemia? Or Down Syndrome, or Cystic Fibrosis, or blindness, or a really bad attitude? Everyone has a story, this one is ours.
Galactosemia is not a blessing. If I could prevent Annabelle from having so much as a bad hair day, you can bet I would. But Annie is a blessing. She’s a big bundle of sloppy kisses, warm cuddles, bright smiles with a set of pipes that can wake the whole neighborhood when she feels like letting’ loose. She’s got Dad’s face and feet, and Mom’s thighs (sorry kid) and stubbornness. She’s everything to us, and oh yeah, she happens to be galactosemic too.
So for anyone who hasn’t experienced anything but “winners” and “keepers” - I can tell you, a little adversity isn’t that bad. And I could go on forever about this topic, but my baby is working on crawling and I don’t want to miss another minute.
(I ran into an acquaintance in passing….)
Acquaintance: Hey there, how are ya?
Me: Great, thanks, and you?
Acquaintance: Not bad, how’s that baby?
Me: Doing really well.
Acquaintance: How old is she now, I can never remember these things?
Me: Just about 8 months, we’re working on getting some teeth and she’s been starting to try and crawl--
Acquaintance: (Gets a serious look) So, is she a winner? A keeper?
Me: (confused?) Of course! She’s such a sweet girl, I can’t believe how fast she’s growing--
Acquaintance: Well good to hear it, so many of these kids these days have problems, and “they” will tell you things like Downs are a “blessing”, but that ain’t no blessing, no problems are….glad to hear you’ve got a winner…
Me: ….well, we’re not without our problems, but Annie is certainly a “winner” (all of this went unheard as Acquaintance was still mumbling about)…
Now I consider myself pretty outspoken, and I certainly have the ability to be insensitive at times (unintentionally of course). But it really caught me off guard that someone would go out of their way (note genetic disorders were not even the topic of our brief conversation?) to make sure I knew, that a “healthy” baby, was desirable. Obviously this was a rare, isolated incident - and obviously the insensitive comments were made without knowing much about me, or Annabelle.
But it did make me think…and stew…and wonder if that’s how most people look at things? I mean really? Let’s be honest here…there’s not a moment of the day that I sit and think, golly, galactosemia is such a blessing. I’m so blessed that we can spell galactosemia, I’m so blessed that Annie will be following a strict diet for life, and that she may have challenges ahead of her that we can’t even imagine right now. If only everyone could experience such a blessing…those of you without galactosemia in your lives are really missing out.
Of course not.
But would I trade a galactosemia-free life for toothless grins? Have you heard my Annie giggle? Nobody is perfect. Annie has ten fingers and ten toes. She has her sight. She has her hearing. There are SO many things that can go wrong with us, what’s a little galactosemia? Or Down Syndrome, or Cystic Fibrosis, or blindness, or a really bad attitude? Everyone has a story, this one is ours.
Galactosemia is not a blessing. If I could prevent Annabelle from having so much as a bad hair day, you can bet I would. But Annie is a blessing. She’s a big bundle of sloppy kisses, warm cuddles, bright smiles with a set of pipes that can wake the whole neighborhood when she feels like letting’ loose. She’s got Dad’s face and feet, and Mom’s thighs (sorry kid) and stubbornness. She’s everything to us, and oh yeah, she happens to be galactosemic too.
So for anyone who hasn’t experienced anything but “winners” and “keepers” - I can tell you, a little adversity isn’t that bad. And I could go on forever about this topic, but my baby is working on crawling and I don’t want to miss another minute.
3.07.2010
Home Sweet Home!
Annie's first time on a park swing, she thinks it's A-OK! :)After over two weeks of traveling, Miss Annie and I are home, along with Dad. We drove to Florida with Auntie Colleen, and drove home with Daddy. We spent most of our time on the Gulf coast of Florida, visiting the Seabird Sanctuary, Florida Aquarium, long walks on the beach (on the warm days! Darn cold, we must have brought it south with us!), John's Pass, etc. We took a more leisurely route on the drive home to stop in Chattanooga, TN where we did a little sight seeing, visited the zoo, checked out the mountains and had a great time. Annabelle was a great little traveler! She's grown so much since we left! We were pretty sure she'd have a tooth by the time we returned, but still just little ridges on those gums. Annie came a long way with her crawling attempts on vacation, but still just manages to go backwards....any day now, we'll have our hands full...
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