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Sunday, March 12, 2017

Rough Patches!





Sometimes LIFE is rough!  We've experienced some recent rough patches..but Thank God we
have our own little village & they are taking care of our bellies (with good food), our soul (with lots of
conversations) & keeping our family in their prayers.. 

I'm sad to tell you.. that my MOM has passed.. it's been slightly under a year that my dad passed..
and now my mom has gone & joined him.  She has a difficult time this past year.. with being in/out of the
hospital with her own sicknesses & let's admit they were married & together 50 years.. I'm sure
she was a bit lonely.

For my immediate family, it was a visit to Vevo's house every weekend..
Grace would get very excited when we pulled up to the house..she knew who was inside.
My  mom & Grace would go back and forth with "mama", Grace's favorite word & my
mom trying to get her to say "dada".. 

Grace was able to 'facetime' Vevo a week ago while both sat in different hospital beds..

Yup.. Grace just had a 2 week stay at Hasbro Children's Hospital..
she went in for a revision of gtube or new one..of course it was the latter.
She had a couple of complications with an immediate 24 hour fever & 
it was a very scary time for her dad & myself.  But as we all know Grace's strength
& resiliance is something out of this world.. SHE is destined to do something huge.. 
we are sure of it!!

Now, she's home.. finally going back to school tomorrow & more loving than usual..
Eating more by mouth.. soup with a spoon, water through a straw & different cup..
I hope her next surgery is to take it out completely.

And to MY personal village - THANK YOU!!




A fruit centerpiece from an old but great friend, that I've just been lucky to reconnect with!!

Our Princess!! Looking healthier than ever..with her 2 new favorite dolls.. from my co-workers..
whom has just made this last week manageable!

Another set of beautiful flowers from one of my part-time jobs.. Ty!!



Love,
pattie & gary, Grace & Maxwell

Thursday, January 26, 2017

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

Monday, December 26, 2016

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


Tuesday, November 15, 2016

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

Monday, September 12, 2016

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

Tuesday, August 30, 2016

"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!)

Wednesday, August 3, 2016

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