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)

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