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)

Mosh Posh!

A mix of things that have happened... as we enter the most exciting time of the year

with a little one...

  Christmas concert at school.. this year, Grace "walked" in with her teacher ..rather than sit in the wagon & be in it the whole concert.. & she sat on her teacher's lap...

She actually signed some of the song.. "You better watch out".. :)

  Grace with Christmas at an event!

Seeing the Christmas Tree for the first time... she LOVES it this year!!

Pacella Tree!!

  just giving some love!

And after a Warm December day of shopping.. Grace gets to go to the swing!!

She absolutely LOVES the swing!!

Thanks for reading!!

Love,

pattie & gary, Grace & maxwell

Happy homecoming day!

It's been 4 years that Grace has been home from the NICU! 

125 days was a long time back then.. she came home at 6lbs 4oz..

of course as a Preemie Mom, you remember weights & dates like this one.. 

it sure was a CELEBRATION!!

I remember exactly what she was wearing.. this newborn "Rock Princess" dress..

it was a 4 hour drive home..(I drove!). with her pulse ox & 02.. I remember it was a nice drive home!

There she was!!

And today has been a great day.. it's been a great 4 years with Grace..

& as every day passes, she's getting stronger, more loveable & beautiful!

This week, finally, Grace started weekly feeding therapy.. it must be already working..

today she 'bit' & swallowed 3 veggie sticks.. with every swallow I applauded & gave

her a 'good job high five'.. she was so proud of herself too!!

It's working & all starting to come together..

  and here she is 4 years later...  telling her Mama to be quiet!

This week at her speech therapy..  sitting up like a big girl..

She has come soo far!! I think the Christmas Season is going to be tougher this year with the tree & lights..

she's already touching the tree!

Thanks for reading about us for 4 years!! 

couldn't do it without all of you.. 

'it takes a village'.. silent prayers are the best!

love,

pattie & gary, Grace & maxwell

World Prematurity Awareness Day!

It's World Prematurity Awareness Day...

Hard to believe Grace is 4 & thriving, when in the first 72 hours they were afraid we

were going to lose her too.. as a matter of fact, I remember it as if it was yesterday..we

had spoken to the hospital chaplain in much of a daze talking about a baptism & last rights..

Who were we? Why were making this decision only days after our babies were born..

it was suppossed to happen like this!

But it does.. fortunately, after a long road, we were able to take Grace home..

& she is thriving..truly Amazing!

But Maxwell went to a better resting place. 

1 in 8 babies are born prematurely, and alot of times there is no rhyme or reason!

I don't say it often enough..but I'v been in a group of MOMS that all have premature babies..

I've been able to meet a few of them through out '1 x year' get togethers..

They are the strongest moms I know.

And the children..just WOW!!

Wear purple today.. consider donating to your local March of Dimes..

we will do another individually wrapped snack drive for the moms in NICU in December..

It's our little "Bless you, Mom" in memory of Maxwell & in honor of Grace.

****************************************

I'm a crazy lady when it comes to moving furniture.. I have a small house, but I like

to move the furniture around all the time. So with a friend's help..we created a little nook for

Grace in her room with toys & books; and I moved the living room furniture around.

Grace LOVES it..She has more rolling room..and last night she was all over the place,

putting her claws up & making vocalizations.. as she was the tickle monster!

As the person playing with her..you're suppossed to roll to chase her..then tickle her..

which she then abrupts in laughter.. it's the cutest!!

She's Amazing.. Amazing Grace.

Love,

pattie & gary, Grace & Maxwell

November check-in.

Here's our monthly check-in.. Grace continues to make some great strides!

We had to do a Modified Barium Swallow Study last week (basically because the school 

are nervous nellies & weren't feeding her what we were sending in.. COMMUNICATION is key here!!)

Anyway, we didn't learn anything new..other than she is cleared of 

thin liquids & eating purees & some solids.

The problem isn't the food or water, but that she needs someone to guide her & remind

her "SIP-DOWN".. the way Gary & I and her feeding clinic person does it..

Grace is a very independant 4 year old!!

Well today, Veterans Day.. Thank you to the Brave for serving our country in the past & present!!

We think about those overseas that continue to keep America safe!

Grace went to a birthday party for a friend from school on Sunday (the only girl from his class that went)

at the local roller skating rink & it was her first time there.. so first time on a scooter & roller skates!!

She did AWESOME.. and absolutely loved it!!

She loved the loud music, seeing her friends..and was laughing the whole time..

(& it was clearly a work out for Mom & Dad!!)

 I think someone might be asking Santa for these kinds of roller skates for Christmas!! And the roller skating rink is about a 1/2 mile from our house..

I see this new adventure in our immediate future!!

I hope you can see this 2nd video..if not, let me know & I'll try again!

It was definitely a PROUD mom & dad moment!!

And onto just one more proud moment.. Grace has reached the 50% percentile on her growth chart..

she is 33 lbs 36.5" tall.. even while wheaning her gtube.. 

she's gaining weight, her belly/gtube area looks good..

stronger every day!

Thanks for reading & keeping up with our family!

Grace is deifnitely an inspiration!

love,

pattie & gary, Grace & maxwell

Rocky!

From Rocky.. "Getting stronger!!"

Grace is doing amazing!!! Her strength is amazing.. 

she is doing wonderful in school and with the help of her teacher & therapist, she's

getting stronger!!

This week at PT, Grace rode her tricycle (by herself!!)  I will upload it

for you today!  It's worth watching... We are so proud of her.

She can now walk with us holding each of her hands & she is asking

to go into the kitchen more frequently to open cabinets!! Yes, she likes to open cabinets

and see what's in them.

Yesterday, we had feeding therapy & she ate yogurt on a nuk brush.. a nuk brush

is an oral motor tool and we dunked the brush into the yogurt & she ate quite a bit..

this is going to be next week's snack for school. 

She has a barium swallow study coming up in the next few weeks..keep us

in your thoughts for that.. We're not sure we'll get alot of information..hopefully

she'll be in a good mood to swallow some liquid & maybe some yogurt.

She's getting big that is for sure!!

thanks for reading!

pattie & gary, Grace & maxwell

Fall. October 2015.

Hi.  It's been a month.. trying to get the computer to co-operate so I can add pictures,

WORK. FAMILY. LIFE. 

You know those things that might get in the way from me blogging!

But I figured if I updated monthly.. that wouldn't be so bad!

Grace is doing great in school.. just a virus last week had her out for a couple of days, but

some good friends & sitters stayed with her so we could work, a quick trip to the ER (long

night), and a few nebulizer treatments...and she's seems back to good!)

She's in pre-school all day now. 8:30 (with the bus) til 2:30..

she's doing alot more standing independently at school (still supported behind her),

trying to get better use of the walker..

feeding is 'ok'.. we're scheduling a barium swallow test within the next month..

g-tube is what it is.. we've weaned her a little to make her hungry & she's tasting

& eating alot more meltables..

Communication with the school seems better..

but had a meeting yesterday, and it would be nice just once to hear MORE positives in meetings

that anything else.  It makes me sad that Grace isn't up to her peers yet, but for what/where

she is .. I just have to be grateful (trust me I know that.. sometimes it's just hard!)

Her receptive language & social skills are definitely her age!

She's been called the 'little mayor' of her school, waving to all the kids as she passes them

by in her wagon.. (she uses a wagon for transporting from class to nurses office, etc).

Here's some pictures:

 With my Dad.. & NO she doesn't have a kitty!!

Her first birthday party for a friend..at Bay state gymnastics.. Momma got a workout too!

She is finally wearing 3T clothes.. 4T shirts.. what strides she has made in gaining weight..

in May '15 she went into the hospital at 24 lbs.  She is now a healthy

31 lbs, and about 38" tall.. 

Thanks for keeping up with her..

OCTOBER is baby infant loss awareness month..

we remember the 2 miscarriages we had prior to the twins

and of course MAXWELL..

the sad part is wondering what Grace & Max would be like

together!  She LOVES all her friends & school and her friends love to play

with her best.. I know they would've been great friends! Now he watches over her,

and no matter what anyone says.. it's NOT really for the best!

Love,

pattie & gary, Grace & maxwell