TGIF & EOM 10:07pm

Just finished billing.. (deep sigh).. but I'm trying not to complain..

you guys must be sick of reading about it!  So here's Grace 'in training'

to do billing next month!! :)

 

 

 

Anyway, everyone's scale is different. 

Grace had a nutrition

appointment yesterday & she was 13 lbs., 11 oz when we last went a month ago

and yesterday, she was 14 lbs. 8oz.  So, as long as she continues to gain

with whoever she is being weighed with..she's doing great!!

In a month, we'll go from Neosure which is more of a 'baby' formula

to Pediasure, which is a 'toddler' formula!!

Maybe she'll like the taste of that better :)

 

I gave her a cookie today..

Look at that face.. she did great sucking on it & putting it in her mouth..

Nutrition wants us to offer her food at least 1-3x's a day..

it's not as easy as it sounds!  But we'll try!

 

 

Yesterday, she had some visitors over..

here's Abby & Olivia (lu lu) holding Grace..

they really enjoy holding her!  And Grace is very relaxed with them.

 

 

 

And today, after her 'helmet' appointment.. they shaved a little inside & now Grace can see.  The only thing is that when we took it off (after we got home), there was this big red mark/welt on her

forehead, right side.. so I don't know if they shaved it off unevenly.. so we're letting

her go without the helmet tonight, and then trying tomorrow for a period of a couple of hours, etc.  The last thing we want is to keep the helmet off..because she had it off for the 6 days she was in the hospital, the head scan showed she stayed the same with no

growth spurt either.  The 'helmet' is really the least of our problems..she does well with it & is in 23 hours, like she's suppossed to. But we want her to be able to wear it, without having a welt on her little noggin!!  But she does look great with the helmet up above her eyes, then on top of her eyes!! :)

 

 

 

Have a safe & happy weekend everyone!

A year ago, we were in Maine for the long weekend..

thank God, we are home & Grace is doing great!!

 

 

 

 

 

Love,

pattie & gary, Grace & Max

 



We have Teeth!! 7:30pm

After months of teething, we now have teeth!!

Two on the bottom..

this picture is not that good, but there are two teeth there..

 

"Grandma's Sweetheart"...

does she look soo big to you guys, too???

 

 

 This is tonight, after bath.. she's wearing high water pj's, there 6 months..

so we need to get some 9 mos/T ('tall')

We are going to nutrition on Thursday, and then pedi surg on Friday a.m., along with the helmet people.. appointments galore..but we get an accurate weight as well!!

 

Tomorrow's our last day with our PT, J.R... I'm already sad!

The other pt did call today & made an appointment for next thursday..

they are in the process of hiring as well, so it'll be a few weeks before she can see

us consistently, on a weekly basis.  I need to talk to OT & find out what their goal is

for Grace.  And we are looking into speech/feeding out-patient clinics to get her

into for the fall.  Busy! Busy!

 

 

 

Kids are going back to school.. Good luck to our friends kids :)

Abby, The Medeiros Boys, and all the others!!

 

 

 

 

 

Love,

pattie & gary, Gracie & maxwell



First time at the Zoo! 7:58pm

We went to the zoo today, first time for Grace.. now that we

have a year membership..that'll be one gift that we renew yearly!

There was alot of families there.. and it'll be great to compare pictures

from this year to next year with Grace.

 

She did well in the stroller.. liked looking around!

 

Grace & the goat..

 

 

We've been putting Grace in her new 'chair'.. it looks a little too mechanical, but 

without her helmet on, she sits in it pretty well & it'll help her concentrate

on eating when she's in it, vs. just a regular high chair.. she tends

to slouch & it doesn't fit her that well (it's too wide)

 

She was getting tired here!

So these were taken yesterday, today we took her helmet off while she was in the chair.

And she did alot better, than her head bobbing..

we'll get a tray for her chair too.. that way she can play with things in front of her..

but as you can see the chair works really well right with the table.

My portuguese little girl, we've been giving her finger foods

to get her to hold them & eat them..

she's eating Portuguese Sweet Bread here!!

She did pretty well with it!!

 

 

 

 

A nice weekend was had..

 

 

 

 

 

 

Hope you all had one as well!!

 

Love,

pattie & gary, Gracie & max



Boppy's & Onion Rings 7:38pm

It's Friday.. and it's been a GREAT week..

Grace is back to feeling 100%.. she looks great too!

We had 'the' car today, so we were able to go to Target with Vevo..

walked around a bit, Vevo pushing Grace..

I got a couple of plastic bins to start putting Grace's clothes in it that don't fit

(now mind you, Auntie Heather..it won't be as great as your basement

looks.. it looks like a consignment shop!!).. but at least I have the tools to start!

A long Fall project, I do believe!

 

 

This was Gracie a year ago...

And here she is TODAY.. Wow!!!  She is certainly getting big!

And she's healthy!

 

 

We finally got a boppy.. and I think she likes it.. she just chilled out today on it.. and hoping once she continues

to strengthen her core, it'll help her to sit up as well.

 

Here she is holding an onion ring tonight.  Daddy was eating them & she would watch him.. put it near his mouth & then eat it.  So we put it in her hand.. and she actually

did a great job bringing it to her mouth, and licking it.. almost chewing on it..

Maybe I just need to skip over the purees.. lol

 

 

 

The car saga continues:  the 2nd car is back, but needed  additional $200 work, done today.. & our mechanic said he wouldn't drive it til we get the brakes done.. another two weeks!  Deep sigh! 

 

 

 

Hope all is well with everyone.  Kids in Fairhaven are heading back to

school next week.. yikes!  Enjoy the last few days of summer off!

Now, I'll never get to see Auntie Heather & Abigail, says Grace!!!

 

 

 

 

Love you guys!

pattie & gary, Gracie & max



Full day home! 7:35pm

Grace's first full day at home went great.  She is all smiles!

Vevo & Vevo' came over, as Mommy went to run some errands..

I think Grace forgot what nap time is.. she slept for only an hour this am,

and then this afternoon just an hour too!!

I will need to get her back into a routine!

Gracie had a bath tonight..and it was the first time

she really was kicking alot!!  She got Mommy all wet!

Mommy & me after bathtime!

 Smiling at Mommy!!

And  wondering why Mommy keeps taking my picture?

We had a great day! Tried to pick up the 2nd car.. and NOPE..

it wouldn't start.. can you believe it?? It's been in the shop since May, every time we go get it, something is wrong with it.. and unfort, with the $$ we've put into it..

we are hoping to get a couple of more years out of it!

Thanks for reading!

All is well!!

Love,

pattie & gary, Gracie & Max



We're Home!!! 4:41pm

Ran a little late this morning to see Grace..but got there in time for 'rounds'..

so that's all that really matters.

Her oxygen was off & the pediatrician was fine with letting her

go home today, as long as pedi surg said the gtube looked ok.

Lucky, for us .. Grace's pedi surgeon that follows her was back from vacation today..

so he stopped in & said, 'looks great. make an appointment with me, and you can go.'

 Here she is at home.. I think she really missed her favorite chair!!

She's been smiling since we got home.. now is napping!

These are two ottamans that we picked up last week for all her toys.. in the corner of the room..outta sight.. :)

And here she is again, just a few minutes ago.. she was playinng with her new dolly.."Dalila".. we tend to name things after who/where we get them from.

Thanks Auntie Dalila!

Our friends, Peter & Paula surprised their 3 sons with a trip to Disney this morning..

they left today.  Have fun!!

And in other news, we're getting back the 2nd car tomorrow ..woohoo!!

I have to work tonight..

no idea what's for dinner!! :(

Thanks for keeping us in your thoughts!

Love,

pattie & gary, Gracie & Maxwell



Rasberries & Update! 11:10pm

I've been 'begging' God alot this morning, before we came, to heal Gracie so

that she is off 02 and we can take her home!

What a wonderful sight to come in & see that her 02 was turned down to 0!!!

Thank you, God!

We just need it to be continued..

She's still on the monitor, and they really want her stats to stay above 90..

she sometimes fluctuates between 88 & above.. the real test will be

this nap she is having right now.. we don't want her to fall under 88 while sleeping!

Pray with me, please!!

Grace looks GREAT today, too!

She was awake when we got here & very playful.. definitely feeling better.

The only downfall is her gtube was leaking around 3:30 this am, so they stopped the feeds as of then..we are waiting for pedi surg team to come in & decide if they're going

up a size on the mic button.. we can always come back for a f/u with her doc this week.. so I'm not to worried about that.. We do a good job at home keeping the button

clean & dry.

I've been teaching Grace how to do 'raspberries' with my mouth..

yesterday, Daddy got to close to her mouth & she gave him her first raspberry!!

It was really cute!!

Thanks for your thoughts & prayers.

Love,

pattie & gary, Gracie & Max

What a day! 10:03pm

Another day in Hasbro.. when we got there this am, Grace

looked pale & wasn't really herself.  She had been bumped to 1 liter of 02

last night; and they reported that she was 'irritable' in the night..

(well, she is not feeling well..I think she deserves to feel a little irritable!)

By 1pm, she was smiling & playing with some of her toys that we brought up;

and we were reading some of her favorite books to her.

Her 02 #'s were good, so I asked they put her on 1/2 liter and she has done

really well with that..(still on that as we just spoke to them)

Here she is from this morning, taken with my cellphone..I should've really taken a picture this afternoon because she looked alot better.  But at least she's alert & smiling!

We got the results from the virus panel & it was entirely negative!!!

So, what she has is a common virus, that will just take it's course.  We are hoping that she can ween off the 02 by Sunday, and we can go home!  They are at the thought that if she came in off 02, she should go home without it.  She just needs a little whiff to get her thru this part of not feeling well.

We just spoke to them to check on her..and unfortunately, the nurse told Gary that

the g-tube was leaking more than half her feed, so they stopped feedings.

Well, we are pissed!!!! We've been there everyday, all day since Wednesday/early Thursday morning & her gtube has been fine.. it leaks a little, but it's been fine.

We even had the pedi surgeons, who see Grace look at it, and they said it's fine..no

infection around it, etc.  Honestly, I think some of the nurses aren't educated on g-tubes, and don't know that the notches have to be lined up (we had to do it ourselves a few times); or leave Grace's arm (unfort) in a 'cuff' so that she can't get to it to pull it.

They told us that a pedi surgeon is on their way up to look at it.

Geesh!!!  So, we are not happy right now!!

Here are some cute pictures that were on my cell phone..

Gracie swinging at Auntie Heather's a few weeks ago!

 This is the doll that Abby let Grace take to NY..

And just a "hi momma" picture!!

Tomorrow we remember our service & burial of Maxwell.

Gone from our lives, but forever in our hearts!!

We love you sweet boy!!

Can't wait to have Grace home.. no 02 & feeling her bright self!!

Thanks for keeping us in your thoughts & prayers!!

Love,

pattie & gary, Gracie & Maxwell



Afternoon Update. 4:16pm

Well, it's not the G-tube..so that's good news.

It is, a viral infection..is where they are leaning.. but won't get the final

bacterial cultures back til tomorrow.  Her respitory needs are an alert, she's having

to have a little oxygen here & is breathing some fast belly breaths.

She has a new rash on her body as well.. small red dots.

So, it could be a viral infection from vaccinations done 10 days ago, or

just something viral she caught.  They want to keep her for a few days to watch her..

help her to ween off the oxygen again!  She is still eating via g-tube & that's going well.

We are heading home for much needed showers, dinner & SLEEP! 

It sure has been a very long two days.

Thanks for all the positive thoughts & prayers!

Love,

pattie & gary, Gracie & maxwell

Hey, God..it's me Grace's Mom..are you listening?! 8:25am

After a high fever Wednesday evening, we ended up taking Grace to the

on-call pediatrician, who admitted her to St. Luke's.

Grace had a high fever, but was acting her usual cute self.

After alot of bloodwork & urine collection, they are treating her for a

bacterial infection.. possible cause, the G-TUBE!!

We are very sad & disappointed .. with all the prayers

that are lifted daily for Grace.. we just don't get it!!

She is healthy as a horse.. if not for that freakin g-tube.

Well, we were transferred this am to Hasbro.. so please keep us in thoughts & prayers!

I will keep you posted as we know!

Thanks..

And God if you are listening, I think our little miracle has been thru enough in the past year! For Sure!!

Love,

pattie & gary, Gracie & max

Pictures as promised. 12:45pm

Here are some pictures from our trip..

The Red Coach Inn, across from the falls, for breakfast on Sunday morning!

 Great Aunt Gloria & Gracie.. Aunt Gloria is 90!!!! Good genes on the pacella side!

There's another Aunt who will be 100 next year!

Nonni holding Gracie at the Country Club.. we went for dinner on Saturday night with brother & sister in-law.. it was very nice.

 Johnny Jr., Grace's cousin who will be 3 in November.. giving Grace a kiss! Aww..

And Nonni & Grandpa having one last hold before we leave!

It was a very nice visit! A nice surprise that went well..

Gary & I got to see Batman on Sunday..very scary, but good!

Nonni babysat.. Grace slept! :)

She's an easy baby!!

Love,

pattie & gary, Gracie & Maxwell



We're Home! 8:35pm

We're home from our mini vacation with the In-laws..

and Grace did great on her 8 hour trip to/from Niagara Falls, NY..

I'll post some more pictures tomorrow.. just

wanted to update everyone that we are back!

Sometimes it's really hard to come back.. they are such wonderful people..

and just being away, cleares my head from all the 'hooplah' that goes on around here.

Back to PT tomorrow, and then seeing OT on thursday.. it's not really those

appointments, it's just good to be away..get to read and get some extra sleep in! :)

Thanks for thinking of us while we were away!

Thanks to sister, Lisa M who sent Grace some birthday presents & we

got them today! "Sassy" toys.. because Grace is a sassy girl.. bath toys..

and DIAPERS.. :)

Hope everyone is doing well..

Have a good week!

promise i'll post pics tomorrow!

love,

pattie & gary, Gracie & Maxwell

Greetings from Niagara! 8:28pm

Well, we made it up to Niagara Falls, NY.. we are actually in Lewiston, which is like Fairhaven to New Bedford to Niagara Falls, NY.

The surprise was great.. left Grace at the front door, as we hid behind the garage..

and waited for someone to come..

The sign on the door says, "no solicitation".. LOL..

Grandpa comes to the door & not sure what to think!

When we say "surprise"..he says he thought he knew who the baby was.. lol

We went inside & he couldn't find his wife.. finally, Nonni (grandma) was

sitting on the back porch.. & he told her, 'you won't believe who's here.. pattie & gary, and the baby'..she said "noo.."... soo she was very surprised!!

Of course then we had to hear that the bedroom wasn't ready.. my MIL

loves STUFF!!!!

Grace has slept well & today it rained so we just went for lunch

and drove around a bit.. tomorrow we'll hit breakfast out.. and maybe do

a little shopping & a good walk with the stroller will be good.

Tonight, Aunt April & Uncle Johnny came over with their 2 year old, John..

soo cute..we haven't seen him in a year.. he's very social, laughing & playing with Grace.

heading out for ice cream..  hope all is well with everyone!!

Abigail let Grace take a doll with her to NY.. this is "Jazzy"

and Gracie laying on the floor together.. Jazzy is having a great adventure in Niagara!

Thanks Abby!! Miss you babe!!

Love,

pattie & gary, Grace & Maxwell



Unfair. 5:02pm

Grace & I have had a busy day.. she had a doctor's appointment this morning

that went really well!!  He weighed her in at 15 lbs., which makes more sense with the last weight gain about 4 weeks ago.. I think her pediatrican's office scale is wayyy off! :)  We're going with her weight as 15lbs.

Today, we remember Maxwell.. as it is his 1st anniversary of his passing!!

We love him with all our heart, we will never forget him.

We are sad that we can not see what he looks like, will never be able to play with him, and that he will never have a earth relationship with Grace. 

We are SURE that he is having a relationship with her from where he is!!

We WILL always love you!!

Death is so unfair! But so is living..

Another man in the news from our area beat his 1 1/2 old baby ..

he is in the hospital with a brain injury!  Please pray for this baby!

how can this 25 year old have custody of the baby & then hurt it to the point

that the baby is hospitalized; but I have to lose mine??

I hate these stories.. especially on days like today! :(

Thanks for the calls & texts.. prayers especially for today!

love,

pattie & gary, Gracie & Maxwell



One Year Check-Up! 3:06pm

Let me start by saying, "every scale is different"..so as long as babies continue

to gain weight with the scale and person that is tracking her weight, we're all set. 

 But it is a little, tiny weenie frustrating!

Grace went to her pediatrician today..and here is the report:

"She's as healthy as a horse!", he said.  Lungs are clear.  Heart sounds good.

And she's gained 2 1/2 lbs. since he last saw her 3 months ago.

According to his scale, she is 13 lbs. 11 oz.

26 1/2" long!!!

My tall, little girl!!

  And here's a show of diapers that Grace has worn since birth.  The first is a 'micro-preemie" diaper, then a Newborn

(she also wore a "preemie", the 3rd one is size 2..and she is currently wearing size 3!!) 

At 1 year actual:

Grace loves to smile & is blabbering alot!

Grace is in size 6-9 month clothes for onesies & one-pieces; for bottoms she's only wearing a 3 mont..(small bum! she'll thank me when she's a teenager! :)

Grace has started to roll over from tummy to back.

She reaches for toys.  She can hold toys in both hands, individually & together.

She transfers toys from right hand to left.  She is dominate on her left hand.

She doesn't like to wear socks, or anything on her feet.

She's got no teeth, yet!!

Auntie Lisa got Grace this puppy for her birthday, and here she is playing

on the floor with Daddy..surronded by her other toys!!

Grace loves to lay on the floor & play.

She loves to be read books too!

We are heading to surprise Nonni & Grandpa in NY..we are leaving Wednesday..

they will be super surprised to see Grace.. and we can't wait to leave!!

I wish it was Tuesday night already!!

Thanks for keeping up with us!!

Love,

pattie & gary, Gracie & Maxwell



The Birthday Party! 9:25pm

Happy Birthday to our blueberry!!

The picture below is of me & Grace & Will & Kelley.   Will was born at 28 weeks, and was in the next room over from Grace while we were in the NICU..

I was soo happy to see them!! And don't the babies look great!!

The cake! Blueberries are piped in the corners & all around! It was a very yummy cake!!

Daddy giving Grace  a taste.. she was looking at it! We'll try another piece tomorrow!

"Yummy!"

 And all the generous gifts from family & friends..

Alot of developmental toys for Grace to play with, hold & (put in her mouth!)

Thanks everyone!!

Dr. Seuss came from Great Aunt Theresa & G. Uncle Ray.. Thank you!!

It was a beautiful day.  It was very HOT outside, most people stayed in the house, which of course made the house hotter.  But it was very nice..with family & friends.

Grace even got a pretty good nap in.. then had a later night's sleep.

Cousin Ben & Emily were great with her.. Ben & I hung out for the day..

Thanks to everyone who made her birthday so special!!

Thanks for reading!

love,

pattie & gary, Gracie & Maxwell

p.s. Always remembering Maxwell, especially today!