4 Gone in ONE week! 7:21pm

By week's end, we have managed to 'rid' of 4 people/docs that

Grace doesn't need to see anymore!! Woohoo!!

 

Of course, Endocronology from yesterday..no need to go back!

Yesterday afternoon, Nutrition out of Hasbro Hospital..we said our good-byes,

as we changed her feeds to 7x's a day, dropping a feed overnight..

from 800 ml's a day down to 700 ml's.

Grace will see a dietician at her new feeding clinic..

 

 drumroll please:::: NO MORE HELMET!!!!

Now, of course there's a few conditions here..but I'm going with the NO HELMET!

Her helmet, as you know, has been off for two weeks because it was causing her head to get red & hurting her... well, we took her in today for a scan..and low & behold,

we are in the single digits for the roundess of her head.  And for the first time, (this is based on the last time we where there, which was 4 weeks ago.. she gained 5mm in her head -growth!)  The roundess went from 16.2 to 9.6 (remember when we started this, this guy, (not a doc) was not sure we'd see any improvement.. well, HA!

So if there was a 'magic' # where it should be, it's like a 6.

We are at a 9.6. Wonderful!

The helmet is getting small for her, he even agreed..

so we will see the doc that referred us for the helmet in January & look at old

pictures & decide to not put it back on.  But as of today, we've all decided she

no longer needs it.. especially since it's leaving marks on her head & too small for her!!

(I'm very happy!! Reality is that her flat spot on her right side has really gone away, her forehead is more rounded, and she looks great to us!!)

 

 

 

 

 

And then in sad news.. our favorite pedi surgeon, JA is leaving the practice

that we go to at Hasbor.  We've been seeing him since April, while Grace was in the hospital.  It's a career move for him..but we will MISS him soo much.  He's

Great with Grace.  Her g-tube area looks great, he said.. there's other pedi surgeons in his office that will continue to follow Grace, when needed.

This is ONE doctor that we didn't want to LOSE!

But we wish him well!!

 

 

 

Grace is getting so big.. and doing so well..

 

 

 

 

 

we are hopefully Christmas Tree shopping this weekend.

Got our new Christmas Stockings to put up.. after we straighten up a bit.

 

 

 

Enjoy the weekend!!

 

love,

pattie & gary, Grace & max :)



Good appointments today. 8:56pm

Grace had a couple of appointments today & both went well.

The first was Endocronology.. her pedi surg thought he

saw some breast tissue developing & we should just get it checked..

so that was today.  They said that little girls, around a year, have what's called

a 'mini puberty; but it goes away some until they really have puberty

(hopefully not til she's 16!)

No bloodwork. No further appointment needed.

Yea!!

 

 

 

And then an appointment with her nutrition at Hasbro..

our last visit with them actually, because she will be followed by a

dietician at her feeding clinic.  But they did agree for us to drop

her night time feed.. or less than 100 ml's, so she's going to be down to

700 ml's in 24 hours.  She's been gaining steady.. actually caught up pretty well

for her 'corrected' age in weight.. 15-25% percentile (just a #)

So we dropped 2 docs in one day :)

 

 

 

Tomorrow is the helmet guy (who is not a doc).. I don't know how I feel about it,

I just want to make an appointment with the plastic surgeon who referred us

& move on from the helmet.. I think her flat spot looks great.. it's really rounded out more, on the side of her head.  And it just seems no matter how often we go to this

guy (every 2-3 weeks), the helmet is never been on straight.  And

honestly, I dread going to this appointment cuz it's soo frustrating!!

 

 

We see her pedi surg tomorrow morning too..at least he'll be brighter..

and happy to see how much Grace has gained & looking..

 



 Grace loves to pull herself up to the sitting position..she's almost got it!!  I think she was watching "wheel of fortune".

 

 

 

 

 

This morning, we got an email from a very special couple that we met in Maine..

for the last year, both Gary & I have honestly thought of them..and wondered

how they were doing, when they went home, and how they're baby Izabella

was doing.. & ironically, they emailed this morning..saying they follow the blog!!

Hi, Sam & Jeneca & Izabella!!

It's so nice to be back in touch with you all again!!

We're glad to be out of the NICU (as I'm sure you are), but we do miss

the special people we met.. :)

 

 

 

 

 

 

 

 

Thanks for thinking of us today!

 

love,

pattie & gary, Gracie & max



Just some cute pictures! 6:15pm

Playing with Daddy.. sitting up like a big girl,

and trying some chowder :) .. she loved it!

Tried grabbing Daddy's pasta off his plate too, we'll have to try

that new food this week.

 

 Grace playing with her laptop!

I was trying to get her holding her sippy cup, but the minute the camera comes out she has to look at me..

 Reading the flyer..

 

 

 And eating Daddy's chowder..

she liked it!!

Look at all those curls!!

 

 

 

 

Love you mama's girl :)

 

 

love,

pattie & gary, Gracie & max



Another good appointment. 5:14pm

Another good appointment today with Dr. B, Grace's neurologist.

He was impressed how far she has come..

and how big she is!  He enjoyed watching her maul her binky..lol

with her new teeth coming in from on top, she is really using that binky

these days.  He really liked that she's using her right hand more, and

transferring toys from both hands & midline.

 

 

Grace is feeling better.. although she's still a little stuffy...

not 100% yet..but getting there.

 

 

This morning, helping Daddy hold his breakfast bowl..

 

 Mommy & Me time..working on "mama" & "dada"

look how good she can lift up her head..

Dr. B is not concerned with her not crawling yet, he

agreed with us that she stiffens her body up when she's aggravated..

and that's a maturity thing..as she gets older (corrected she's only 12 mos, 13 on Friday).. she'll mature & break out of the stiffness.

She's doing great!!

 

 

 

 

Grace is playing with Daddy on the floor..

I haven't fed her at the table in a few days, because she hasn't felt well..

but we will get back into that tomorrow..

maybe sausages :) & toast..

 

 

 

 

 

 

 

Thanks for reading everyone!

Love,

pattie & gary, Gracie & max



Sickies :( 8:44pm

Daddy's been sick for four weeks.. ughhh!!  A cough, bronchitis,

more coughing, and lots of complaining!

 

Now poor Gracie has a stuffy nose, and today started with a cough!

She's still smiling though..so that's always a plus.

 

Tonight, I feel like I have a very dry throat.. I hope it doesn't turn

into anything.. tis the season, I supposse.

Hope it doesn't last long.

 

Morning naptime.. precious!

And chillin on the floor, trying to suck on some vitamin C..a tangerine

 

We still haven't been able to put the helmet back on..we will try again tomorrow..

Grace has a few appointments this week.. 5 to be exact!

Tuesday, Thursday & Friday..

 

I've already cancelled her speech person for tomorrow.. just

to give us each an extra day to recooperate

from whatever may be brewing!

Please keep us in your prayers!

 

 

 

 

 

 

 

Thanks for reading!

Hope you all had a blessed Thanksgiving Season..

 

 

Love,

pattie & gary, Gracie & max



The two EE's! 8:03pm

Edaville & Eating!!

 

Now I'm not going to post everyday about her eating..

but if we get a good picture, of course I will!!

 

Saw my good friend tonight & she had asked about how I came about

finding this feeding clinic.  Well, it was all me.. I googled feeding clinics for

infants... there is one at Hasbro, but you have to go thru GI (& she doesn't need

to see a GI specialist); there's on in Fall River, who never called me back..

& this one down in Sandwich, called me right away.. I am very excited

to be giving Grace new foods & seeing what she does with them..

and today I got her next 3 months schedule with them already!!

 

 

 This was breakfast this morning..she tried an egg yolk, hard boiled & grated down.. she was sticking her fingers in it..

she ate a little..did great!  We also gave her some sweet potatoe puree in a the cup you see upside down on her tray.. because she wants to hold everything herself & dumped the cup in her tray.. it was very funny!!!

And then a little toast to go with her eggs...

 

 

We also went to Edaville Railroad tonight..it's a park with thousands of lights on display..I remember going there as a child..there's a train ride & Grace did wonderfully!!  She was full of smiles!  She got to wear this beautiful hand made sweater made by my friend's mom, Debbie!! It fits her well, but still a little big..so it'll last throughout winter for sure!!    She didn't want to wear her hat much.. I don't know,

she used to be a hat girl..now she takes it off! (maybe scorned from the helmet?)

So when it got chilly we put the blanket on her head.. :)

 

 a REALLY good picture of Grace..not

so much of Daddy :) looking the other way.

This is great too!!

We got there around 4pm & left at 6pm.. she was starting to feel cold & got a little sad/crying.. but she did great

on train ride..& we held her too.. it was wonderful to share Edaville with my husband & daughter.. hopefully they'll stick around for years to come! (Edaville that is!)

 

 

 

 

 

 

Went to a friend's wake tonight.. so sad for her parents, and her husband.

But her Mom was her rock.. please keep them in your prayers!

 

 

 

 

Watching Frosty the Snowman now..

love my Christmas movies!!

 

 

 

 

Happy Weekend!

 

Love,

pattie & gary, Gracie & max

 



Happy Thanksgiving! 10:06pm

Happy Thanksgiving!!

We have a lot to be thankful for, most of all that we are HOME

with Grace enjoy Thanksgiving Day.

 

Trying Cranberry Sauce with her NUK

She also had some mashed potatoes!!

 

 

And then was passed out!!

 

 

We tried her helmet on tonight, and just had to go in to change her & she was crying a little bit.. unfort, we took the helmet off her..I think it really just bothers her.

We are going back a week from tomorrow & Gary is going to give the guy 'heck'..

I think I'll sit in the car.  I just don't think this man is very good with the

whole helmet thing!  He's always adjusting & re-adjusting & it still leaves marks on her head.  Geesh!!

 

 

Anyway, we had a nice day at a dear friends home this morning for

coffee & a mimosa (i needed one!!) & then turkey dinner with my parents,

and my brother & Nikki.  It was a pleasant day!

 

 

Tomorrow, Daddy is home.. so we are planning on going to

Edaville Railroad.. for festive light watching, a train ride & some good pictures.

I can't wait.  We used to go there as kids.. and I'm excited to be taking

Grace there.. as her first year!!

 

 

 

A shout out to "Karen" in North Fairhaven.. she was walking her dog this morning

and saw us come out of our friends' home with Grace & asked,

"this is the blueberry right??"

She has been following the blog since last year...

Thank you, Karen!!   I know alot of you keep up with the blog, and I don't

know all of you.. it's always nice to hear someone say they read it & think of Grace often.  Those happy thoughts, and silent prayers are what keeps

 Grace & her Mommy strong!!  Thank you!

 

Wishing you all a very Happy Thanksgiving Season!!

 

 

 

Love,

pattie & gary, Grace & max



Operation Eating..day 1. 9:04pm

Okay.. Grace did soo well yesterday with strangers.. heehee..

maybe she was just performing!

 

No.. today went well.. Grace slept til 7:45am.. Wow!!

Then we had Breakfast..

this was her before picture..

She was using her Nuk, had her sippy cup on her tray, her chewing tube,

powdered up Rice Krispies on the tray, yogurt with sweet potatoe & apple on the right

and pears in the little blue cup in front.

 

She did really "drinking" her Pear smoothie..

gagged herself twice with the green chewing tube

and held her sippy cup for a little.

 

This was her after picture..soo

she did pretty good.. it's a good sign when her face is messy!!

 

 

Grace had OT today.. and then we went on errand to CVS..she did

great.. then off to vevo's house & back home for nap.

I'm thankful that Grace sleeps so well...she takes a good 2-3 hour nap every day

in the afternoon; and goes down between 7pm & 8pm for 10 hours.

She's growing for sure!!

 

We have not given up on the helmet (YET!)..however, we have it off

in these pictures because she had a pretty good size 'welt' on her head..

we see the helmet guy (don't get me started) next Friday..so he needs, again!

to fix it!  Her pedi advised us to put Benadryl on her head 4x's a day,

and leave the helmet off for a few days. 

 

I gotta say..I really ENJOY seeing her without it on!! 

We're waiting to see the plastic surgeon in Jan., on her views of if it's helped enough

to take it off!

 

 

 

Here's another feeding try after nap time:

 

She was not into it at all.. a powdered crouton and some water!

A couple of snapeas as well.. she likes to throw them on the floor

to hear me say, "Uh-oh"... LOL.

 

 

 

 

Oh.. by the way, her top tooth is coming in!!

she will never give it up in a picture though..but trust me I have felt it!

 

 

 

Happy Thanksgiving to you & your family!

Thanks for reading & keeping up with our family!

 

 

Love,

pattie & gary, Gracie & max



Feeding. 4:54pm

What a wonderful day!

Gary & I have learned more today about feeding with Grace, then

we have in a year!!!  Grace had an appointment at Spaulding Rehab, down the cape,

for a feeding evaluation..so she can continue with feeding clinics there 1x week.

Our goal:  to get rid of the g-tube & get Gracie chewing, swallowing & eating solids.

We're off to a great start!!

 

 This was her outfit today! Thanks, Auntie April for her 1st & beautiful sweater dress!!

 

We learned & bought new tools to help with feeding.

On the left, the blue & green food mill (to grind & make into 'powder' anything, so she can eat everything)..

the white think is a NUK (she has used this before, kinda like a toothbrush, with small nubs at the tip.. helps to "awaken" the mouth & she holds it in her hand herself. 

The green thing is new from today..it's a stretchy tubing that provides sensory feedback for biting & chewing..she did GREAT with it today at the clinic, using it to chew & bite on.  And then of course her spoon is the far blue thing.

 

 

Grace likes spicy foods!! She ate some powdered up Cesar Snapea crisps..

(you usually see these in the salad aisle..as it is a topping for Salads).  She also drank Sweet Potatoe puree from a little cup & had a little sweet potatoe with her NUK & Spoon. 

 

I made a special trip to Kmart when we got home to get her new grinder

and some snacks from Stop & Shop.. we will grind croutons, veggie sticks (need to get apple sticks (she had those today!!).. sweet & spicy.

 

Snapea Crisps!!!

Crispy Onions (garlic pepper), Veggie Stix & Croutons.. & of course I will add purees to her daily diet, both with a spoon & in a little cup.

 

With her new hand held grinding machine..we can grind anything..

we put it down on her tray in front of her, telling her what is is & then letting her

"play"  with it..putting her hands in it..(textures) feeling it.

 

 

 

This new found way to allow Grace to eat what we eat & finally to taste different

textures & foods, makes Gary & I very excited.  Grace's new speech pathologist at Spaulding already, is wonderful.. and we are excited to start this in our home..

We are committed to trying eating at least 2x's, if not 3x's a day!

With Grace's recently GREAT weight gain, her gtube feeds will probably be

reduced a bit, this of course, allowing her to be more hungry for food!!

 

And Grace has a new sippy cup!!! We are going to start her with

this, since she seems disinterested in the bottle.

"It's mine, Daddy!!"

 

 

 

 

In other news, I bought Grace some play-doh as a treat for a great job done today..

and here she is playing with it.. It's in a plastic baggie, so she can see it (& not eat it!)

 

 

 

 

 

Play Doh Soft Pack.... just great to start feeling playdoh!

 

 

 

Thanks for reading up on us.  We hope to try some grounded/powdered turkey & maybe some mashed potatoes & cranberry sauce!! Can't wait to show everyone pictures!!!!  We are soo proud of her! With the right people on her team, she can conquer anything!!!! Love you Gracie girl!!

 

 

 

 

 

Love you guys!

pattie & gary, Gracie & max

 

 

 



Grace's 15 mo. appointment! 9:50pm

Today was a good day all around.

My mom is finally home from the hospital after 10 days..

and Grace had a great wellness check at her 15 month pedi appointment.

 

Her weight (with their scale) is 17 lbs. 15oz!

Her pedi is happy with the weight..but agrees that her pediasure should

be cut a little..probably by end of the month when we see nutrition & her pedi surgeon.

The nurse (very flimsy) took her height at 26 1/4"..

we are not so sure about that.

 

She got 3 shots..her 2nd flu & her 15 mo. vaccinations.

She's on the growth chart for weight, and just under for height.

She showed her pedi that she can roll from her belly to her back & then back

again.. on those very narrow tables.

 

 here's my big girl.. & with Daddy reading a book!!

 

I learned a new recipe about two weeks ago.  My cousin, Ayse sent me a recipe for "Baklava" a greek & lebanese dessert.  Then my friend, Beth gave me a lesson how how to work with the phyllo (it can get very dry, and it's so paper thin..very delicate).  I had all the ingredients to make the recipe & with all that has happened in the last week.. finally got to make it yesterday (Sunday).  This is the finish product!  It takes good.. I really need to get some cans & give some away for the holidays.. I can not eat more than 2 more pieces.  It's a very rich, sweet (sugar & butter) dessert.  But it is delicious!  Gary helped too.

We do enjoy making holiday cookies as well.

 

 

 

Tomorrow is a big day for Grace as well.. we are heading down the Cape

for a feeding team evaluation.  I'm excited to see what they can do to help us start Grace on solids & we bought a new 'cup' for her to try vs. the bottle.

Wish us luck!

 

 

 

 

I again, heard of someone that I know that has recently & suddenly passed away.

She is my age..maybe a year younger.. my heart goes out to her family, husband, children.extended family.  Sad!  So much death lately.. :(

 

 

 

 

Happy Birthday Daddy!! Today is REALLY his birthday!!

 

 

 

 

Thanks for reading!

pattie, gary & Gracie & max



Preemie Awareness Day. 8:57pm

HI, All.. I'm writing in PURPLE..as it's the color for

Premature Awareness Day, which is today..

I'm remembering ALL those babies born daily that are born too early!

Some of them make it.. some of them don't.

I remember all my friends that I met in the NICU..

Will, Eleanor, & Sam's daughter too!

I thank my facebook group of Preemie Moms who are very supportive

in all situations!

 

 

 

 

 

I'm sorry I haven't written much this week..it's been a crazy week!

My mom is still in the hospital, probably coming home Mon or Tues.

Daddy went to the ER, Tuesday night & has a touch of bronchitis..

and a cough that won't quick!!!!!!!!!!!!!!!!!!1

Grace was having a good week, but then yesterday we noticed alot of sneezing,

and coughing.. followed by some wheezing this morning; we decided

to take her into the ER this morning... just a cold it seems, the wheezing is from

the back of her nose with all the gung that's in it.  We're doing albuterol treatments

every four hours.  She's still her smiley self though.. and wants to play, when

she should be sleeping!

 

 

Here's a few pictures from her this week:

 

Mommy & Grace!

 

 Using a tissue!! She HATES that.. what baby does!

 

Hi, Momma!!

 

 

 

Please keep in prayer the family of AF, unfortunately lost her battle this week.

RIP!!  And for RB, who lost his battle with cancer.

Alot of sad people this week, my heart goes out to them!

 

 

Next week.. Grace's feeding evaluation on Tuesday;

and her 15 mo. check up on Monday. Will be a busy few days before the Holiday!

 

 

 

 

 

 

Love,

pattie & gary, Gracie & max

 



Daddy's Surprise Party!! 8:51pm

I had Daddy's surprise birthday party last night & boy, was he suprised!!

We held it at our church hall, and it was themed..

"50 Shades of Gary"

we had black & white pictures of him when he was a little

on black paper background.

It was a huge success!!

All the pictures on the wall..

Daddy at 2!! Look how tall...

 

 

the cake..

My brother, John & nephew..Andrew!  Great pic!!

FRIENDS

The star of the night.. Gary & our friend, Ross did a GREAT speech..welcoming him

to the 50 club!!

 

 

And his two favorite girls!!

His birthday isn't til the 19th, but now I don't have to worry about it anymore.

Love you babe.. Happy early Birthday!!

 

 

 

 

p.s. Lots of prayers needed for my Mom..who had an unfortunate accident last night..

she tripped & hurt her face!  She's in ICU..and despite what could've  happened..

doing ok. 

 

 

p.s.s. Thanks to Monique & Madeline who babysat while we could enjoy!

 

 

 

love,

pattie & gary, Grace & max