"The sea does not reward those who are too anxious,
too greedy, or too impatient.  One should lie empty, open,
choiceless as a beach - waiting for a gift from the sea."

- Anne Morrow Lindbergh

Day at the Beach...



These photos make me cry... with happiness... sadness...
for all that we have and for all we have lost.
Mostly for what we have...




Scarlett found the feel of the sand between
her fingers and toes to be a quite unsettling.

Family...


Cousins...



Fun! Fun! Fun!

Maegan (3 years), Scarlett (22 months), Ava (15 months)

Summer Sunshine

Scarlett's new splints have given her soooo much confidence.

My two loveys...

July 2007 Update

Scarlett is thriving!  Scarlett is happy!  Scarlett is delightful!

What is Scarlett up to these days you may be asking (in case the photos don't say enough, ya right!).  Scarlett is soooooooooooo close to taking her first steps by herself.  She can walk for hours and hours and hours using the slightest touch of our hands for guidance or by using her plastic walker.  If we let go for a brief moment she will do one of three things... (1) stand on her own for a couple of seconds, arms outstretched, until her knees buckle and she crouches to the ground, or (2) she'll take a couple of steps and then fly forward, assuming we will always be there to catch her (hence why you may notice a couple of goose-egg bumps on her head from time to time), or (3) she'll plop down on her tush and get very very angry at us for letting her go (her pout is earth-shattering!).  If we had the energy to match Scarlett's we would be walking her from dawn to dusk, she never ever wants to stop.  From the moment she wakes up she wants us to take her walking.  It is exciting and exhausting attempting to keep up with her.

Scarlett received her custom-made orthotic splints (see photo below) this past month and oh my goodness, what an incredible difference they have made in Scarlett's ankle strength and her confidence!!  There was absolutely no adjustment period.  From the moment we first put them on her feet she was off and running so to speak.  Her confidence peeked from that moment forward and now she is soaring.


Scarlett's Custom Ankle Splints,
(they fit right inside of her shoe)

Scarlett is the Signing Queen'.  She loves sigh-language!  We can't even keep up with the number of signs she now knows.  She surprises us every day with new ones.  Off the top of my head I can list off some of them:

Milk
More
Dad (her favourite sign right now!)
Please
Baby (another favourite)
Dog
Chair (another favourite)
Eat
Elephant
Happy
Sad
Shoes
Socks
Butterfly
Flower
Book
Table
Ball

She waves bye-bye. 

As far as vocalizing words, she is becoming more confident.  She has been experimenting with lots of new sounds lately which is great.  Her favourite word of all time is 'Hi!'.  Scarlett probably says 'Hi' at least a thousand times a day.  Everywhere we go and everyone we see (whether she knows people or not) she'll give a big enthusiastic 'Hi!'.  It is the one word that gives Scarlett the biggest response and the warmest replies.  People can't help but respond, whether we're in the supermarket, at the park, or walking down the street.  If people walk by and seem to be having a bad day, Scarlett will say 'Hi' and soon bring a smile to their face :)

As for other words, anything with a 'ck' in it like: duck, truck, socks, blocks, etc. - she says 'Kaa' for all of these.

She can say 'Pleeeeease' (very cute when she does it!)
Dad
Mom is 'Mom-Mom'
Ball is 'All'
Dolly is 'Olly'
Baby, she says 'Baaaybeeee' (very cute when she says this too!)
More is 'mmmmmmuhhh'
Creepy (or as Scarlett says it 'Creeeeepeeeeee' (don't ask, Frank started her on this one)

Scarlett is very loving.  She gives the best hugs and kisses ever xoxoxoxoxoxoxx (you can see Scarlett giving her cousin Maegan a hug and you can just see the joy and love she puts into her hugs).

She does very cute animal impersonations too:

Cow is 'moo'
Chicken is 'brock'
Sheep is 'baa'
Cat is 'mee-oww'
Dog is 'rfffff'
Snake is 'sssssssss'
Lion is 'roar'
Bear is 'grrrroar'
Rooster is 'ah-ah-ah-ah-ah-ah'

She can say Ee-i-ee-i-o, but when she says it it sounds like 'eeee-ayyy-eeee-ayyyy-eeee-ayyy'.

Scarlett loves dancing and singing.  She definitely has rhythm (not sure where she gets it from).  Anytime there is music in our house (which is pretty much always) her little body is groovin.  And she loves playing instruments.  Drumming is her favourite.  She also plays the harmonica, recorder, and maraccas.  She can sing and sign 'Twinkle Twinkle Little Star', 'Itsy Bitsy Spider', 'If You're Happy and You Know it', and the 'Hokey Pokey'.

Oh, and we have no idea how she learned this, but when we say 'shhhhhhh' when she is being too loud she will yell or scream even louder!  Adorable and too funny.  And when she is patting our cat Gromit she is quite rough, so we will say 'soft' or 'gentle' and with these words she will hit harder.  How do kids learn to not listen to their parents so early in life??  I think discipline is going to be a lost art in our home.  Neither Frank or I are interested in being hard on Scarlett - ever, and Scarlett doesn't seem too keen on listening anyhow so it all works out.  I know we will pay for this parenting style later on in life.  Oh boy are we in trouble.

So basically what all of this means is that Scarlett is Brilliant.  Absolutely Brilliant.

I find it so fascinating how quickly children learn.  Sometimes I will look at Scarlett and witness something new that I haven't seen her do and I just say 'how did you know that?'.  Amazing really.  Never ever underestimate the little souls in your life.  I learn far more from Scarlett than I do from any one else in my life.  She is a remarkable little person.

As for other tidbits of Fedorak family news, way back in January we had booked our vacation for July.  It would have been last week actually.  We would drive to Seattle to visit friends, then fly to Montreal to visit more friends and then off to Buffalo for the Hunter's Hope Krabbe Family & Medical Symposium.  Unfortunately Scarlett developed a fever while we were in Seattle (mere hours before our plane was to take-off for Montreal) and it was then that we made the decision to take our baby home.  Her little body was telling us she wanted to go home.  She ended up with a bad cough and cold.  Poor baby.
Part of Our Vacation (the only part actually)...
 

 

Scarlett with Duncan & Sandy in Seattle (Sandy is our dear friend who lost her first son, Logan, to Krabbe disease).  Her second son, Duncan, thankfully is Krabbe-free and healthy.  He is all boy and he just loves sports!!  Frank and I can't wait until we can get Duncan up here and teach him to ice-skate and play hockey. 

Although Scarlett wasn't feeling well during our visit we had a wonderful time and Sandy made us a phenomenal BBQ salmon feast - mmmmmm!  Duncan is such a cutie and he and Frank had a blast playing with water guns and playing baseball.  Frank is one big kid!  We definitely plan on going back for a longer, more relaxed visit.  Thanks Sandy for everything!!  We love you both so much!

Thankfully Scarlett is now feeling soooo much better and back to her energetic self.  Sadly, the vacation we had waited all year for was not to be.  It would have been so wonderful to finally introduce Scarlett to all of the families that have loved and supported us from afar.  Oh well, in the grand scheme of things Scarlett's health is first and foremost and by next year she will be one year stronger and healthier.  Who knows, maybe by the time next year's Symposium comes around she will be ready to walk in the 'Laps for Life'.  Every day we witness our dreams becoming reality.

Life is busy and wonderful.

Hugs for all,
Lisa, Frank & Scarlett
xoxoxooxoxoxoxoxoxx