Jan 2017 Update

What a nice winter we are having.. aLOT of snow a few weeks ago, but it went away 

within 2 days.. that's good!!

Unfortunately the illness haven't gone away that quickly.. & Grace has had a tough

winter with being sick.  After Christmas vacation, she was home for 2 weeks with

a cold that went into a pneumonia!  She was hospitalized for 24 hours..

we are Thankful that she is feeling better & now back to school full-time..

and progressing wonderfully!!!

A note from her teacher this week.. Grace is learning her colors (picks 2 out of 2 at 100%)

& when at 'task' she does wonderfully.. of course she is soo SOCIAL that she

loves to see where her friends are around the room & what they are doing.. 

At school & now at home, Grace is using sign language very consistently.

She says, 'mama' by voice & has called her friend "noah" at school..

she also has said 'nona' (her grandma in NY) on the phone..

Her core strength is really improving..and she is close to standing independently..

she is scooting on her bum to get to places on the floor

and she is riding a scooter at school during her PT sessions.

Thankfully, she has restarted her outpatient PT sessions.. and trying to get a couple of days a week.. 

her strength should just continue.

Here she is yesterday.. in her cute outfit on her way to school..

Love her!! 

Finally.. she is in a size 5.  

Two new pairs of sneakers this weekend - size 8.5

Still loves MUSIC, especially playing the drums.. & listening to her cd in the car

attends a music class weekly.

Signing on a regular basis.. "me", "want" "my turn", "baby", "dada", "nurse", "help"

"eat" & "drink".. among others...

Thanks for thinking of us & reading about our precious little one!

Love,

pattie, gary, Grace & Maxwell

Merry Christmas!

Merry Christmas!!

Grace is getting so big.. she is in size 4/5 (XS).. no more 'toddler'.. although she is still fitting

her little bum in size 4T pants, although i think that is also starting to get a little tight.

A nice family Christmas was had.  This year, is the first year, she really enjoyed

the lights & the wrapping/unwrapping of the Christmas paper.

We visited houses that displayed lights & Dada even put lights up

on our own house.  We even named our tree, "Mr. Tree".  He will stay up til January 2nd, so Grace can

enjoy the lights on it... she enjoys walking up to the tree & feeling his little arms (bristles)..

  Daddy & Grace, Christmas morning..

Santa visited... Princess Tent & Red Cube chair

Grace was really a JOY this Christmas Season..

it's fun to be a child at Christmas, but it's even better to see Christmas through

your child's eyes!

Merry Christmas everyone!

Keep the magic of this season in your heart throughout the year!!

love,

pattie & gary, Grace & maxwell

Grace.

Transitions happening & Grace is doing great.. 

I started a full time job in mid September, just after we got back from our cruise..

and Grace is at her new school & program full time.

We had a few bumps in the road in the beginning, but things are running smoothly.

Grace is really learning with more 1:1 (one on one) assistance in the classroom..

she no longer throws her stuff/toys, when she's done with them.

She's getting PT, OT, & Speech through school and her outpatient speech therapist

says she's doing great with tongue movements & making some extra vocal noises..

 (she thinks we're getting close to talking.. whoohoo!)

As far as eating by mouth, Grace is doing great.  She has mastered closing her mouth on 

a sippy cup to drink water & a spoon to eat food.

She loves soups & we just keep practicing!!

Here she is eating her snack tonight.. Doritos!  She loves strong flavors..has always

loved them.  She does great with her tongue lateral & pushing from side to side

as well as swallowing some of the chips.  

As papa Louis would say, "She's getting there!"

Grace uses her walker alot at school & walking around by just holding an adults hands (over her head).

her favorite thing is music & playing ball.  Her teacher reports that they play ball with the other

kids in the hallway & at recess & Grace is full of belly laughs.

Tonight, we played ball (with a very big ball) & she tries to bounce it .. (basketball player in the making?)

We are enrolled in a SouthCoast Music Together class & have been for the last

9 weeks.. Grace absolutely LOVES it..

it's on Saturday mornings, so dada gets to come with us too.. Grace

used to go when she was alot younger.. it's much more enjoyable to watch her now..

as a matter of fact the class comes with a song book & a couple of cd's of the songs & she listens

to it at night to lull her to sleep.

Thanks for keeping up to date with Grace!

I'll have to post again with weights & heights.. she is getting very tall.

But I can say she is in a 5T shirt & 4T pants!

Love,

pattie & gary, Grace & maxwell

Cruising..

HI! We all just got back from our yearly Cruise Vacation

& it was wonderful!!

 Our first day.. on our balcony..watching us sail from Boston!

Splash Park fun!!

Love her!!

BERMUDA!!

This was Grace the whole trip.. "Fist-Bump" Queen!! Here's one of her favorite crew memebers..

we also met another from India, who has a 5 year old daughter, Grace!! He was wonderful with

our Grace.. hope to see him next year!!

Great trip..if you've never been.. I highly recommend..

#Cruising!

Love,

pattie & gary, Grace & maxwell

"Never underestimate the power of a Girl!"

Grace's 1st day of school today.. Pre-K/K .. in a new program & a new school..

with new teachers & new kids..

She's my daughter.. She's a girl.. She's adaptable, she will be FINE!

(mama's mantra for the day!!)

This is her first school picture for the year!!

Grace will be attending a program that will give her more one on one services..

hopefully this will catch her up to her peers in a few years!  Everyone is telling us that we will

see huge growth.. I hope her nutrition is getting her to that point as well!

It's hard .. As much as I was excited to get her back into the #Routine & #BacktoSchool

it's been a rough morning.. & she's only been gone an hour!

I hope the teacher checks in with me later.. 

She had a tough time getting on the van, she was the only kid in there.. she's a child that thrives around other children.. I'm sure she's the farthest out, so she was the first to be picked up... right?

You'll do great, Grace!!

Mama & Dada just worry too much.. I think that's called "Helicopter Parents".. (LOL).. I'm sure our friends are getting a kick out of that.. yes, we are admitting to being helicopters!

The good news.. it's only 3 days..& then we are on our way to a beautiful cruise for a week!

Then we'll have the firsts start all over again on the 12th..

LOVE YOU BABY GIRL!!!!

Mama & Daddy (& Max!)

Happy 5th Birthday Baby Blueberries!!!

It's here.. the day has arrived.. Grace & Maxwell are FIVE!!! 

boy, that went fast, didn't it.. feels like just yesterday I was posting that they have arrived into the world.. 

now we are celebrating a five year milestone.

Yes, she's still on g-tube.. (but it's getting her stronger & good nutrition) plus we are playing

with a real food blends.. another company who offers an organic blended food diet vs. formula..

hoping to start that in the next few months on a regular basis.  She's eating & swallowing though.. & even that she's doing so much better than when she started.

Yes, she's not walking independently yet..but she's soo close!!

Walking between Mom & Dad holding our hands..she does fantastic!

While holding both her hands, walking with just one person..she does great.

Standing against the couch independently.. & laying on her belly lifting up her head.. she 

is truly getting so strong!  

We have to remember where she started, as much as sometimes we don't want to..

it's her story.. She has been diagnosed with Celebral Palsy..but even with a 'diagnosis' (sometimes for treatment necessities) she's doing GREAT.

Today is about GRACE & MAXWELL..

HAPPY BIRTHDAY to my little BLUEBERRIES!!!

We LOVE you!!

love,

mom, dad & max

In the life of Grace..

It's happening.. we are getting close to the date where it all began..

it brings me into some PTSD, but in trying to stay positive it brings me to a place where

I can honestly see Grace is getting older & bigger..and she's soo smart.. so receptive.

She understands what is said to her.. cognition is spot on!

  Yup! Grace will be sporting her new glasses in about 4 weeks.. we did this one time before remember? and she wasn't very good about keeping them on?  Well, her eyesight has improved quite a bit since then..but she's got some nearsided-ness (both mom & dad are nearsided) happening..so we're hoping the glasses will help.  Stop taking Mama's off & wear your on!!

Is this a Milestone or what????  I mean look at this big girl.. with the right positioning..she stands on her own..

sure, she's leaning on the couch a little..but just the fact that she's up & standing there..long 

enough for me to take the picture..  Gosh, I love her!!

And from a friend who recently watched her for a few hours.. 

I love this picture!! Sitting up straight..(which she has been doing for awhile), her infectious smile

and overall happiness!!   

Grace has been 'sharing' quiet a bit lately.. your turn, then mine! her & i play her favorite..drums alot!

She loves to take a book & turn the pages..

She's walking everywhere.. (we rarely carry her).. if she motions to get down, we don't stop

her.. we simply let her slide down & then hold her by hands only & she walks to where she

wants to go.. 

She's back into Music Together (can't wait to take her on Friday).. it's going to be so different this

time around.. we went a few years ago when she wasn't sitting up on her own.. Our babysitter took her last week & they had a great time.. she's even scooting for her own toys..

She's better at independent play.. I can go to the bathroom & leave her with some toys... (wink!)

And most recently we have started pretend play..

she's always been good with pretending with a baby doll..but we're now pretending with 'soup' & a bowl..

or a coffee mug & 'coffee'... 

I can't belive in less than a month she will be FIVE!!! Can you believe it...

In a week or so, I will be have written this blog for FIVE years.. how crazy is that!!

I love you Grace..and I'm soo proud of you!!!!

love,

mama, dada & Maxwell