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