Happy Homecoming!! 12:23pm

Happy Homecoming!!

It's official, we've been home a YEAR!!

 

 

 

On the left, Grace today at 18 lbs. 1.5oz & on the top right, leaving MMC a year ago, in her Rock Princess onesie..and then on the bottom right.. AT HOME!!

 

 

I remember the days leading up to her departure so clearly. 

I don't think Gary or I slept a wink the night before..we arrived early at 7:00 a.m.

to get Grace ready to leave.

It took us 4 hours to get home, as we were driving 55mph all the way..

Grace came home on oxygen, and a foot monitor.

If you notice in the picture, the bottom right picture she is in her 'giraffe' chair,

and in the picture from today on the left she is in her Giraffe chair...

WOW!!

 

 

We are glad to finally be home for a year!

Happy Homecoming my sweet Mama's girl!!!

 

 

 

 

 

 

 

 

 

 

Love,

pattie & gary, Gracie & max

Tree Shopping! 8:04pm

We went and got our Christmas Tree on Sunday..

after having a fake tree up for a few days, a small fake tree I might add..

we decided, with Grace a little older let's start the tradition of a real tree

with her.  So off we went.. trust me she is smiling in this pic:

 

That was our tree..right to the right :)

 

 

As soon as we get the lights & some ornaments on it..I'll post a picture!

 

 

I got a new Vera Bradley purse on Saturday for my 'early' birthday gift..

and finally got out of the dark ages, and have upgraded to an iphone 4..

I haven't gotten in yet..hopefully by Thursday..

so I'll be downloading pictures from my phone to the computer..

and who knows what pictures may be posted!

 

 A nice bright blue purse.. makes me happy :)

 Grace is using her sippy cup..but now that she isn't eating in the middle of the night..

her last feed is either 1 or 2.. by 8:30 she is thirsty & hungry.. so we've been giving

her food & yesterday she took 25ml's by bottle!!

 

 

Just a cute mom & me photo!!

 

 

 

 

 

Tomorrow is a BIG day for Grace, Mommy & Daddy..

you'll just have to come back & read why!

 

 

 

 

Rudolph is on.. I must go & watch my favorite Christmas movie..

and my other favorite, Elf is also on..

 

 

 

Thanks for reading!

love,

pattie & gary, Gracie & max



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