Off she goes!

Annabelle started preschool last month.  I stressed about the choice of her preschool and when she would enter, apparently three is the new four when it comes to pre-preschool.  I'm pretty old school, we skipped that experience, so by four, she was more than ready.  We visited three different schools as a family, checked the snack procedures everywhere, stressed about days of the week and start times (ok, just me really).  Shamefully, I actually had a pro/con sheet, and maybe a few graphs in order to pick this perfect little heaven worthy of housing my kid for a few hours a week.  No need for intervention, I know how ridiculous this all sounds. 

We settled on a school and got to work on meeting her teachers and starting the whole "galactosemia conversation".  After asking around and stealing a few ideas from trusted galactosemia mom's who have gone before us, we settled on a one-page write up to introduce Annie.  One page of just-the-basics on galactosemia in order to help them understand her diet.  But more than that, we tried to make sure that Annie's preschool experience was as normal as possible.  I tried to be cool during our one on one with the teachers, but as always, on the way out, my husband kindly pointed out that I could have said half of what I said. I was a jittery mess hoping I said enough, not too much, didn't scare them off, but didn't make them think it wasn't a big deal.  Either way, after graphs and pro/con lists, school visits, sleepless nights, galactosemia handouts and drilling Annie over and over again about checking all her snacks, reading labels, and remembering to show her medical bracelet to anyone handing her food...it was time...to let her go!

It was like holding a horse at the gate.

Big sis was ready.

Exactly. What. I. Was. Waiting. For.

I loved seeing her confident, excited and ready to go. 

I was more mamarazzi than usual this morning.

Backpack on, ready to walk to school.

We walked Annie to school as a family.  Annie gave baby sis a ride.

And in she strutted, barely remembering to give us a little kiss.




Annie has been in school for almost a month.  She has made new friends, learned new songs, brought home oodles of paintings, drawings, and other goodies she has created.  Every morning she is excited to go to school and even occasionally, when we pick her up, tells me "I wish I could just stay at school all day, Mom."  That's what I want to hear.  Let us see if that's what you're still saying in ten years?  But for now, I just want to roll around in the joy of a short school week, a happy kid having new experiences and the innocence of it all. 

Of course I still grill her every day on what she had for "snack time".   And every day she tells me, "it was safe for me mom". 

Her first school photo:

Four years of Annie.

Annabelle June will be 4 this week.

 

Four years...?  Only 4?  Or 4 already?  I'm not sure which is more fitting, but I feel both equally.

 

Hard to believe we once looked like this:

A few weeks before we were three.

No one called me mom, I had NO idea what "full time job" meant, I had no idea I could love like I love now.

So much changed on July 14, 2009, as it does with any baby, and any mom could type out some heart felt story about how their child changed their lives. 

And of course, I will. ;)

There she is!  Pink, loud, amazing...we made a person!

Incredible.  I know, I know...like we're the first people to make a baby.  Obviously it's been done before, but really, once you do it, wow... (that's all I got, WOW.)

Here's the little miracle again.  A day later.

As I was flipping through pictures to use for this post, it struck me.  Before we even left the hospital, our little peanut, was already taking on that orange (jaundice) glow.  We had no idea.  First time parents.  I'm sure the hospital staff assumed she had her hue due to typical infant jaundice, and sent us on our way.

Our sweet, orange, jaundice baby.  We were home for one day - and a day away from news that would rock our world.

At a routine, three day old check up, we started to suspect something wasn't right.  I'll spare the details, as I've told that story before.  But it was then that we first learned of galactosemia, detected by a newborn screening test (hmm, I vaguely remember tucking some sort of paperwork into a folder, regarding some info that would never pertain to me, right?)  It was possible, that baby Annie was "galactosemic", nothing confirmed, but to be safe, we put her on soy formula.  That's right, because after 9 months of researching the importance of breast feeding, and 36 hours in the hospital being tortured by the breast feeding nazi-nurses...we now found that breast milk could potentially end the life of our baby, at the very least, decrease her quality of life severely.

Woah.

Days 3-10 are a complete blur to me.  We started to put the pieces together, Annie's jaundice, a few other liver signs, daily trips to the lab for heel pricks to test bilirubin, and hours and hours a day we couldn't cuddle her as she was strapped to a photo light blanket to bring down her bilirubin.

 

THE day.  Day 5.

I post this horrible picture, because I know there are other parent's out there, right now, on day 5.  This was the day everything we read about galactosemic infants came true.  Annie was ultra jaundice, completely lethargic, she didn't budge for over 24 hours (no eating, no fluttering her eyes at us, a limp, orange, noodle).  Sadly, this was the first day the new grandparents visited Annie at home, we all passed her around, trying to pretend we weren't all as nervous as we were.  I had only been a mom for 5 days, but that was enough to know, this was not right. My stomach turns just imagining all that I didn't know that day.

I think I was always destined to be a "hover-mom", probably too cautious, too involved, over-bearing?  But whatever my potential, this day, solidified my future parenting.  I would have run to the ends of the earth with that baby searching for answers - and four years later, that's what we're still doing.

Annie was born on July 14.  On July 27th, the official results were in.  She was indeed a "classic galactosemic", Dad got the call at work, and came home to tell me over an early lunch.  I was just getting out of the shower, I sank to the floor in a towel, finding it hard to breathe.  Crushed.  At that moment I knew, any hope we held out for some false positive was over.  Complete devastation.  As if I hadn't spent every chance I had, researching galactosemia, and sweating over the complications: liver damage, brain damage, speech issues, learning disabilities, tremors...

The initial results confirming our diagnosis.
 

By now, Annie had adjusted to her soy formula (beyond the usual infant colic-y time that we would endure till about four months).  Her color had improved.  She had "come back to life" from that tragic day five.  Yet I was still gasping for air, on pins and needles, trying to make sense of everything.  Talk about a curve ball...

We struggled, and loved through that first year.  Luckily for me, Annie eventually took over.  I'm sure she could sense my nerves and worries, maybe because I held her and cried the majority of the first month?  Maybe the way day five of her life changed me forever, it gave her the will to show me I could let up a little? 

Who's lethargic now?  Annie, one year after entering our lives. 

 



And she turned two.
(FYI, this was her first french fry, and first food ever "out")

She became a big sister at two and a half.  Welcome little sister, Emeline.

Annie turned three. 
She looks miserably galactosemic doesn't she?  (sarcasm, in case that's not dripping through the screen) 
Her birthday party was this day, she read half of her birthday cards herself.

Nearly four.  Growing up fast.  Absolutely beautiful.

 

 Today, we are a family of four:  Dad, Mom, Annabelle & Emeline.  If you saw us walking down the street, you'd never imagine we had anything but an uneventful start to parenthood four years ago.  Currently we are fully involved with The Galactosemia Foundation as the outreach coordinators.  I would give anything to go back in time and give "day-five-new-mom-me" a hug.  So that's what we try to do, comfort new families and share our story.

www.galactosemia.org

 

We have been incredibly lucky to have a local support group, GAMA (Galactosemia Association of Midwest America).  Individuals and families from this local group made our first year bearable. Their support provided those first few months, is really what inspires us to reach out to the next set of new families.

www.galactosemiamidwest.com

 

We also owe a great deal of thanks to Newborn Screening and a diligent doctor.  Without an early diagnosis, Annie's healthy beginning might not have been what it was.  Because of this, we are currently getting involved with the Save Babies Through Newborn Screening Foundation.  Every galactosemic baby should have the start (or better) that Annie did.

 www.savebabies.org

I made Annie's birthday post about galactosemia.  It's so not what she is about.   Really, she loves to read, tell really good (and many horrible) jokes, she sings, she dances, she loves her friends, she's sassy and sweet.  She starts preschool this fall.  She's my fishing buddy, she's an amazing hiker, and loves the outdoors. 

She's a caring big sister too!

But regardless of our luck thus far, and our seemingly complication free trip through galactosemia, I can't forget those first few weeks, and those who aren't as lucky.  Our future is very uncertain, and our efforts with the wonderful organizations making a difference will continue to be a huge part of who we are. 

Easter 2013

A rather quiet holiday for us - very rare!  A weekend of enjoying the mild midwest temps outdoors, fishing, sidewalk-chalking, swinging, hiking -- and plenty of chocolate bunny eating and easter egg coloring!  Just the four of us...

Don't worry, we let him go...

We're watching for baby ducks!  Love is in the air on the pond ;)

Popcorn on the dock = dining al fresco

Spring

Blogging isn’t my thing lately.  Every week begins, seemingly long, and yet somehow we go from Monday to Friday in the blink of an eye.  Weekends are much like the weekdays with two little ones and a business.  Our Tuesday is as good as a Saturday, sometimes that’s in our favor, but more often than not the Saturdays feel like Tuesdays, rather than the other way around.  Whatever, so we’re busy.  Story of everyone’s life…

I won’t even pretend to catch up from where I left off.  Emeline is walking now, and dancing.  Lots of dancing.  Anything even remotely resembling a tune and she stops, puts her hands up and bends her little knees and sways.  Lots of “talking”, she’s clearly fond of Dad, has her own sound for the cats, and has “no” down pretty good (with a swift, “nah, nah, nah”).  She’s picking up a few signs which she does rather sloppily.  However, if some crazy expensive gourmet chocolate is in sight or sniffing radius, she has the signs and sounds for “eat” and “more” down perfectly.  Her favorite hobbies are unloading, unraveling and emptying: book shelves, drawers of kitchen items, her sister’s underwear drawer, tissue boxes, magazine racks, toilet paper rolls…the options are endless.  As is the work to be done, following her creative reign throughout the house on any given day. 

Busy, busy bee

 

Annie is continuing to go from 3 to 16.  Tonight she locked herself in the bathroom a few times claiming to need privacy while brushing her teeth.  I can only imagine what a decade will bring.   She loves hanging out with her friends and cousins and attending her "Little Learners", "Jumping Beans" and "Wiggles & Giggles" classes.  Annie's social calendar is regularly booked with playgroup dates and family field trip adventures.  Her reading skills continue to grow.  It’s crazy, but it doesn’t even faze me now to hear her off in the other room flipping through the national geographic and reading aloud.  She is an amazing big sister, often reading to Emeline, sharing toys and food with Emeline and looking out for her.  All the while, maintaining a sort of reality for the little thing by throwing in a careless shove, snatching a toy she could care less about, or resorting to baby talk in attempt to regain the spotlight.  After all, we keep it real around here.

Cousins

Special friend, and fellow Wiggler & Giggler/Jumping Bean

Twins, two and a half years apart

An awesome get together with some of our favorite people.

 

When I'm not photographing the kids or restocking bookshelves, I've been keeping busy with our galactosemia work.  Our local Grant’s Wish 5k is just around the corner in early May. (http://mini-meek.blogspot.com/2013/03/grants-wish-5k-may-4th.html) I’ve been fielding plenty of new family emails, our latest have been from Spain, Australia, North Carolina & New York.  And we’re cooking up a benefit concert later this summer that should be a great event.

Cabin fever is an understatement around here.  It’s been a long winter.  We’re really looking forward to some sunshine and getting outside this holiday weekend. 

Happy Easter from our blog to you, wherever YOU are!

Emeline, 12 months, Annabelle 3 1/2 years

 

Grant's Wish 5k - May 4th

Many of you have been our friends and family long before we could spell galactosemia.

 

Many of you know us because of galactosemia.

 

Some of you may have even met us along the way, without ever realizing galactosemia was such a huge part of our lives.

 

Whatever has brought you here.  This post is for you. 

For those of you who are thinking, "WHAT is she rambling about?  Is someone sick?"

 

Well.  Kinda.

 

Galactosemia is a rare genetic metabolic disorder.

1 in 60,000 births, so they say.

Galactosemia does not have a cure, nor does it really have a treatment.

Currently, galactosemics follow a controversial diet as their only form of "treatment" in the hopes of minimizing or coping with complications such as:

cataracts

learning disabilities

speech difficulties

liver failure

kidney failure

brain damage

premature ovarian failure

tremors

and more....

 

Those of you who know our Annie, may or may not know that she is galactosemic.

 

Currently Annie has defied all the odds.  She is seemingly complication free, despite being galactosemic.  Not all of Annie's friends have been so lucky, nor are we guaranteed the same health in the future.  Annie maintains a strict dairy free diet.  At three and a half, she has never tasted a "gold fish" cracker, an ice cream cone, or an M&M.  She never will.  All in hopes of dodging some of galactosemia's worst complications.

 

One of the most frustrating aspects regarding galactosemia is the lack of information.  Being so rare, very little research has been done.  As parents we are constantly searching for answers to make sure we are caring for Annie the best we can, and struggling to find ways to ensure her future health.

 

On Saturday, May 4th a fundraiser will be held supporting galactosemia research and awareness.

Please consider joining us or donating to this cause:

Grant's Wish

http://www.galactosemiamidwest.com/tg_event/grants-wish-5k/

 

Annie's Wish = Grant's Wish

 

 

 

 

 

 

 

 

 

Fall Family Photos

Thank you to our Aunt Cherie for the fantastic photo day.  Impossible to choose - here are a few I couldn't resist sharing :)

 

Fall with the foursome

Most of the leaves have fallen, we've already had a halloween party or two, we picked out our pumpkins just in time for carving and pumpkin bread making!  Emeline is now 8 months - crawling, climbing, standing, shuffling, cruising...mostly smiles, lucky us!  However, no longer content to be watching the world go by, she is all up in it, and protesting loudly when not holding what big sis is holding, standing where big sis is standing, or eating what big sis is eating!

 

It was pretty chilly and windy for our pumpkin hunting!

Super Dad

Teeth chattering but still searching for the right pumpkin :)



2012's pumpkins :)

Our "bird" feeder

Emeline - 8 months, the ONLY shot where she wasn't crawling away at warp speed....not sure we'll get a 9 month photo.