SIX.

SIX.

Can you believe it???

We had a GREAT time celebrating Grace's SIXTH birthday at

Great Wolf Lodge!

We brought her most fantastic nanny & her 3 year old daughter.. we swam, and swam

and floated.. Grace absolutely LOVES the water so she was in heaven.

I think this might be her yearly birthday gift.. the house party happens tomorrow.

 I LOVE THIS PICTURE!!

At SIX.. "unoffically" weighing in at 40 lbs!  Approximately 42" tall (will confirm at six year old heath check next week.  LOVES playing basketball, loves music & swimming/water.

Frequently washes her hands (in school & at home).

Walking & gaining strength daily.. walking in walker & by holding ones hands.. has been seen 

letting go & taking a few steps on her own!!

Eating, especially with her friend Zoaria.. hash browns, bacon, SOUP, fishies

on a new formula- Nourish/an organic blend of vegetables - food based.

Sassy & pinchy.

Expresses needs & wants by signing.. learning signs quickly & efficiently.

CUTE!!! VERY CUTE!!

To my little love bug.. Thank you for making ME your MOM!!

And to my lovebug in Heaven- Thank YOU for being my Heavenly Angel.. 

it does NOT get better with time.. please don't say that phrase.. 

Love,

pattie & gary, Grace & Maxwell

Less than a month...

And Grace will be SIX.. (6).. how can that be??

I was in a store at lunch today and saw a new mom & dad 

with three week old twins,

A Boy.  And a Girl.

I was sad... 

I wished them the best.. told them Congratulations.. and i meant it..

but I secretly I wanted to tell them, I was a twin..that I had twins (one in a more heavenly home), 

but then I didn't want to appear like the crazy lady in the store. 

So I wished them well ..and left.  Sad.

As I've always said.. I think my sadness is What could've been.

What would they being doing together?

Grace is so adaptable & very loving..but she is also at times a terrible three year old..

She's chronologically six, but developmentally maybe 2-3.. certainly in 

some ways.. entering that 'terrible 3 year old stage'

Anyway.. she is having a GREAT summer!  We have a great sitter watching her, last week

she enjoyed a splash park, a pool with a friend & is learning to go on the potty among

other things.  This week it's back to school for the next five weeks.. monday thru thursday, 1/2 days.

She's eating by mouth more..not 100%, but definitely more.. it takes discipline from

our part too.. and sometimes that's the last thing we want to do..

"she'll get there" by dear father in law would say..

She will.  She still melts my heart with all her hugs & kisses!

She is a very loving child!!

  Notice how she is holding her FORK :)  Yea!!

I think this might just have to be her birthday picture!

I love her.  I love you too Maxwell!!

love,

pattie, gary, Grace & maxwell

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

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

Paddling upstream..

School's coming to an end.. which for me just brings a little extra anxiety!

Grace is a routine girl.. who am I kidding? SO AM I !!

For the summer, she'll be attending a summer school program - tuesdays through thursdays 9-12..

then what?  Let's see, I've signed her up for Music Together (we've done it when she was smaller, so I'm sure she'll love it now) on Friday mornings.. and then our wonderful PCA will make sure she 

gets out to the zoo & parks, and a whole lotta fun.

From Sept 2015 - Preschool Full Day

 Spring 2016

Look how much she's grown & changed.. I'm sure someone who hasn't seen her in awhile will see a huge difference.. I see little differences here & there.. (if i could get the picture to be sidebyside I'm sure it would be easier to see)..

The anxiety of where Grace will attend school in the fall is happening right now.

It's already starting.. the worry, the fear of doing the right thing for her..

Currently, she is in the public school system with a WONDERFUL (can't say enough good things) of her "paraprofessional" who is with her ALL day.. She has taught Grace so much, & works wonderfully with her.

The thought of having the school use her as Grace's 1 on 1 for next year, is just a thought in our mind..as we asked the school & the intention of having Grace repeat preschool where she is & the answer was a "NO."

Why not? They make us feel like they don't want to educate her there.. :(

So the "team" decides that Grace would thrive through a collaborative education system, with the number of kids in the class alot smaller & more direct one on one support.. OK, I'll give them that.. she does need to be 'educated'.. & might do better with alot more 1:1 attention

however, Grace is the queen of her current school.. from 1st graders to 5th graders.. everyone knows her,

she is Ms. Social Bee & everyone as she is, is motivated by her & her by them..

what happens with that? This team knows the expectations of mom & dad when it comes to 

feeding, swallowing, PT, OT, & Speech.. do we start all over again??

I know I worry too much..but honestly, as I repeat all the time..she is FOUR.. 

FIVE even..   what's in the best interest for Grace??

As a mom of an adult down syndrome woman recently said to me, 

"Pattie its just the beginning of the on-going battle you will have with the school & honestly, the social part is as much as a big deal as the education part."

In cases like this, I just wish it was easier.. an "on going battle" with the school system..

really?? As if LIFE wasn't hard enough..

Thanks for keeping up!

pattie & gary, Grace & maxwell

With all the rain, there is a rainbow!

So much happening lately.. I feel I haven't had time to even blog the good things happening..

Grace did have a revision surgery on her gtube on April 21st,

not 'good' to go under & be in surgery..but good as in hopefully it has helped with leakage.

Today is the first day in 2 weeks that she didn't LEAK anything..not water at school or 

her formula.. So.. yea, things are healing nicely!!

The other good thing that has come out of this surgery, is from her awesome surgeon..

we're lucky to have her.  She recommended a company who blends real food up for tubies..

it helps with digestion & even growth etc.  Food like:  chicken, brown rice & carrots; hemp, kale & quinoa

& salmon, oats & squash.  So we are trying the variety pack..

This will be tomorrow's dinner.. 

So it comes in this pack like this.. & I just use a syringe bring up 60ml (2 oz) & make it a little thinner with 1 oz water..& then we 'bolus' feed into her gtube via the syringe.

We then follow up with the rest of her 'dinner' via her pediasure..

we started using this last Thursday & suffice to say, she has been pooping regularly!!!! (with no miralax)

And I even think she's been a little more hungrier..  we'll look into a prescription & see if our 

insurance will pay for it in a month or so.. if it continues to go well!

It's very exciting!

  Our little friend, absolutely LOVES ice cream..here she is eating my favorite, Black Raspberry.  Her friend, Abby was over a few weeks ago & they had cones in the back seat.. vanilla from McDonald's..

And then in bigger news.. NO MORE CRIB!!!

Grace has been sleeping in this new big girl crib for a few weeks now.. & at first it stunk, I'm not going to lie..she had a hard time going down.. but now she's doing great.. & sleeps all night!

She likes to be warm in a very cozy blanket. 

And for how long she is.. she still curls way up in it..

In school, she's doing fantastic.. the teacher's aide is wonderful with her..

She is learning how to eat off a spoon & closing her lips around it.. 

Today, her outside speech therapist thought she said, "Oh NO" clear as day twice..

We are signing her up for soccer , maybe swim..

she walks fantastically by holding each of our hands on both sides.. walker at school AlL the time..

We are so proud of how far Grace has come!

Thanks for keeping up!

To our friends in Florida - LOVE & MISS YOU BOTH!!!

love,

pattie & gary, Grace & maxwell :)

Saying good-bye

It's a sad day today... & tomorrow too.. I'm sad for Grace

& i'm sad for Vevoo.. (grandfather in Portuguese)

Vevoo has been sick & has finally gone to his home in heaven..

the good news is he's with Maxwell.. I hope they know how much they are loved.

Grace had her own unique relationship with Vevoo..and was even able to visit with

him last week.. & before that at the nursing home.. 

We would visit Vevo & Vavo weekly, she would sit on his lap & bite his oxygen wire.. (lol)

he would nod his head "no-no" & she would repeat it.. shaking her own head. "no-no"

He was so proud of her!!

When he heard he was dying, I was there.. & he cried.. saying he was going to miss his baby! (Grace)..

along with his other grandchildren who he loved dearly!

My dad was alot of things in life.. some good, bad & even ugly sometimes..

but he did what he could when he could..

in his later years, he was kind, he was loving & emotional!

He was afraid of dying.  He didn't want to leave my mother or his babies!!

Keep my families in your good thoughts & prayers as we say good bye to Vevoo!

 Our little musician!

Love,

pattie & gary, Grace & Maxwell

Back in Maine..

We've been away in NH for the last 2 days..

today we were at Maine Medical Center..the first time we've been back since

we left with Grace on 12/5/11.

We met up with our little friend, Will (who was Grace's little friend in the next room over when she was in the NICU)..it was SOO nice to see Will & his mom, Kelley..we hadn't seen them since

August of 2012 - at Grace's first birthday!

Here are some pictures from today:

 with Grace's Doc from the NICU.. 'Peter'..

Sticking out her tongue!!

  Many of the nurses from the NICU came out to say 'HI" to Grace..they were amazed by her very Curly hair!!  her outgoing personality.. and she said "hi" to all of them & waved!!  This is Susan, who was a  HUGE part of Grace's life when she was in the NICU..

felt like a life time ago..but also emotionally I think we were more overwhelmed than she was.

It was soo nice to see the respitory therapists, & the nurses.. Sue, Susan, Andrea, soooo many came out to visit with us & Will.. soo many familiar faces.. but unfortunately can't remember all the names..

THANK YOU, MMC!!!

Will & Grace back together again!!

 Grace hugging Will..

Topped off with a lunch in the cafeteria..where Will offered Grace his mashed potatoes

& told her to eat some of his yummy Green Beans!!

It was a nice visit! 

thank you!

love,

pattie & gary, Grace & maxwell

Pictures.. Snow & Coldy ..

Walking the mall.. Grace also has the same walker at school & she is doing AWESOME with it.. I've been pleasantly surprised watching her walk from classroom to office the last few times I've had to pick her up at school.. yay!!

Trying out Snow.. 

Our Snowday was IN side..  :)

Wearing big girl jeans.. this is actually from this week.. that's her best friend, Ally near her :)

Love you all,

pattie & gary, Grace & maxwell

January Check-in.

Sorry..it's been awhile.. things are busy..but I am committed to this blog..

so I'm going to commit to at least writing monthly!!

Grace had a bout of a fever virus last week, it was the first week since being in school 

that she was home for a week!  Good thing we have SUPER NANNY..who was able to stay with 

her while we worked.

January has been a good month for Grace..

as a family, we went away for 3 days a few weeks ago to the cape.. & had a good time..

here's some pictures..(YES, she is getting big!)

On a carousel!!

Fishing with Dada at the Children's Museum.. 

And her favorite.. in the hotel pool!!!!  We had a really nice time!!

Today.. was the BEST day in January for us..

We had to pick up Grace at school for an appointment & feeding clinic..

& I go in.. chit chat with the nurse.. waiting for Grace to come to the office with her teacher..

(Gary was waiting in the car)..

Well, I see her.. WALKING in her walker from her classroom..

(which if I had to say is a very long corridor!)

It was sooooooo awesome.. so I ran out to the car to get Gary & we watched..

She walked all the way up.. almost speedy in that walker..

(she has her own walker (finally) at school.. so instead of being transported in the wagon (sitting)..

she has been utilizing the walker more & more.. 

We were soo proud of her!!!

When she saw us, her face was priceless.. She gave Mama big hugs!!

Of course on her way up, a little girl (probly 2nd grader) stopped to say 'hi'.. & the 2nd

grade teacher was walking by & stopped to say hi to Grace & Grace blew her a kiss!!

Honestly.. Ms. Social Butterfly..

The 2nd grade teacher told me that her class saw her walking in the walker today & were so

happy... they were all waving at her & her back!!

(I know.. she should be running for office!)

Anyway.. in the words of Grandpa Pacella..

"She's getting there!"

Love you love bug!!!

Love,

pattie & gary, Grace & maxwell (our guardian angel forever)