Grace's new toy!

Grace was fitted in her "Super Stander" today..

with the title super stander, I was imagining, something much bigger..

and 'scarier' for Mom & Grace..

it's not that tall, and really not that wide!

She hated it..but it was her first time in it..

just a little different .. We should have it in home by next week this time..

(because of her birthday party this weekend, it's one less thing in the house)

 

 

 

 

She does not look happy, does she?? But it's a pretty purple..

has that tray in front for her toys.. and I'll take a better pic next week of

the whole set up!  This will allow her to bear weight in her legs..

 

Starting today, she will do PT 2x's a week..

once at the center where we get services, (today)

& then Wednesday's in house!

 

 

 

 

Doing everything we can to help Miss Grace along!

 

 

Thanks for reading!

love,

pattie & gary, Grace & Maxwell



7 Weeks...

It's been 7 weeks since Grace had her g-tube resighted!  Only 7 weeks.. it feels longer, because we've seen sooo much improvement!!

First, she's not playing the banjo on her belly anymore!! There is no leakage..maybe a little, very little..we've been adding a little critic-aid cream around the gtube..and her skin looks great! NOTHING like before.. I can't believe she lived & we lived a year n half with so much leakage.  Now the only reason we are changing her more than once a day, is because of all the drool on her shirt from her teeth!

As you can see.. a mouthful!!!

 

 

Grace has always had a constipation problem..and we've always just given her Miralax once a day.. well, with some Preemie Mom friends that I know & reading up on it..

we are trying something new with her g-tube feeds.  It's called "blenderized" diet..

and whatever it is we are eating, we can puree & add it to her pediasure or other liquid,

and give it to her via g-tube.  Until I meet with her nutritionist, for now, I'm just

adding a high calorie puree to her pediasure...and I've been doing that for the

last week..and we've noticed a BIG difference in her pooping (not to be TMI)..but

it's soft & she's doing it daily!! YAY! "Natural fiber!"

So, I hope our nutritionist is on board with blenderizing..as I'm familiarizing myself

to get to that point for her feeds.  This way as well, she may just feel 'hungrier' to eat

more real foods.  For the last week, she's gone from 6 feeds in 24 hours, down to 4.

We are not seeing a huge need for hunger yet, but we will, I'm sure!!

 

 

  Grace had her first dip in the ocean last night.. her cousins were over & we went for a walk down the street .. to "our beach"..

here she is with Mama.. she loves the water...and she loved standing up in the ocean.

I see a beach day in our future!!

 

 

 

 

A lot happening..and not too soon..

a big week is coming up for us..

as we remember how far Grace has come..

we're looking forward to celebrating her 2nd birthday this Saturday..

August 3rd!! 

 

 

 

Thanks for keeping up with us!

love,

pattie & gary, Grace & maxwell

Week ending in pictures..

Just some great shots of Miss Grace for the end of this week...

 

 banging out to PINK!

Mommy & Me...

At the park..she loved it!

 

 

 

All in all, we had a good week!

 

 

 

 

Thanks for keeping up!

love,

pattie & gary, Gracie & maxwell



Moving ahead..

With the right equipment, we're giving Grace every opportunity

to be the best she can!

 

Today, Grace got her hip brace.. we're starting with a few hours at nap

time, that she wears it; and then again a few hours at bedtime.

This afternoon, at nap, she wore it for only 45 minutes.. she was fussing a little, so I took it off.  Now she is down for the night, and hopefully will wear it

for a few hours tonight.

 

She will eventually wear it all night.

This hip brace, will help loosen up her hips a little, and strengthen

her legs/hips.

 

Here's a pic from nap time:

 

   so it keeps her legs & hips in the 'frog' position..and for someone who loves to roll on her belly at night..that's what's going to be the toughest part for her... she really can't move in it.  That's the only thing I really don't like about it.  I know she will get used to it, and I'm already used to putting it on & off.. I hope she's just comfortable in it.  But I know it'll help her...

  An evening jaunt to the park tonight, Grace &

Mommy going down the slide...

 

 And Grace on her first swing ride in the park..

she absolutely LOVED it!!

  She looks so big!!!!

 

 

 

Next week, she gets fitted for a stander.. I think that's going to appear a bit more

daunting (the structure anyway)..but again, it's a step, literally in the right direction

to help her strengthen her core to stand & walk!!

Look at that smile..there's nothing we won't do to help her!!

 

 

 

 

Thanks for keeping up!

love,

pattie & gary, Grace & maxwell



Motivated weekend..

Grace had her (once again) first Swim class yesterday..she did great!  It was like she never left .. (we started in June, but then when she ended up in the hospital, we missed 3 weeks).  We got there a little early, so we had to wait.. she was really into watching the kids in the pool.. then when it was her turn, she was really into it.  (Our other 'preemie' friends, twins Journey & Harrison.. are joining us in the swim class.. so that's fun!)

 

 Giving Mama a funny face!

 

 

 

Just a cute picture.. Grace rockin the hits on my iphone!!



 

Visited with Vevo & Avo today.. & we always play the piano before

we leave.. Dada put Grace on the bench today & she was more than

happy to look at mama & smile for the camera..

She has long fingers.. could be a piano player!!

Grace actually sat for about 15 seconds by herself, playing the piano too!!

 

 

 

 

In other news, Gary & I have finally started to paint the office & clean it out..

this is a project we've wanted to do for about a year now..

the office is that room in the house, that just collects everything!

Here's a couple of before pictures, and before week-ends, we should have after

pictures.. We're painting it yellow & adding some tables..and then some 'things' from

IKEA..

 

 

Another busy week, OT, PT & Speech

picking up Grace's new hip brace on Wednesday & Vevo's birthday..

so I think we're doing breakfast with her!

Friday is Grace's neurologist appointment.. we see him every six months..

should be a good appointment.. she's gotten so big since 8 months ago! (last time we saw him)

 

 

Have a blessed week, all!!

Prayers to our church family who had a sad lost today..

RIP:  Gary S!!

 

 

 

Love,

pattie & gary, Grace & Max

 

 

 

Sorry it's been awhile..

Sorry, it's been awhile..guess I didn't really realize how long

it has been since I've written.  Honestly, I can't remember what we've

been doing the last week.. other than OT & PT for Grace, a few

doctor's appointments in there..and a few meetings for me,

new & old ones.

I'm tired.  But I wanted to post a "hello" and a few cute pictures!!

 

 

 

  Grace is sitting up better in her Princess chair..still loving playing catch!

My friend, Helena stopped by yesterday for a visit!

Great picture of her & Grace.

  And tonight at dinner!!

 

 

Grace got her new mic-key button today! Everything looks good.  We should be able to start the Pediasure 1.5 by the end of this week.. that's a more calorie dense version..

so she'll only need to take 135ml's by g-tube 4x's a day (vs. now 150 ml's 6x's day).

No more night time feeds.

We're hoping by morning, Grace will be hungry enough to EAT & drink

a bottle!!  We can feel that she is definitely getting heavier & stronger (trust me she is strong already).. with all her feeds & no leakage! (who would've thunk!)

 

 

Starting in two weeks, Grace will be getting PT twice a week, once at home

and then once at the center that provides the service.

She did see her physiatrist recently..and he had a little concern that her

femur bones are a little crooked in her thighs, but with the continued strength, and

bearing weight down in her legs..it should get better.  We don't have to see him again til January.  He has ordered a hip brace for her to wear during nap & sleep times..

to help loosen her hips up a little bit.  And then she will be fitted in a

'super stander'..to help with walking & bearing weight down.

She is doing great with PT..sitting on a stool & starting to sit by herself on the floor.

She is still wearing her braces on her feet & doing well with that as well.

It's been a long process for our little peanut..but she is getting there!!

 

 

Another round of swim class starts this Saturday!

We recommended it to another family, and they will be attending it with us.

Should be fun!!

 

 

It's been soo HOT..we've been staying in, for the most part.

Hope you're all trying to stay somewhat cool!

 

 

Things are busy here... getting ready & planning Grace's 2nd birthday..

wow..already!! Time flies!!

 

 

 

Thanks for keeping up!

love,

pattie & gary, Gracie & max

 



Cousins at the pool!

A gorgeous day.. spent poolside..

ahh.. how I miss these days..

 

Grace did GREAT in the pool..she wasn't even tired,

as her 12:00 nap time passed..she splashed, stayed in a floaty for awhile..

and played alot with her cousins.

Grace loves when the water splashes her face..she giggles..

 

  Playing together!!

And after a long day.. naptime!!

 

 

It's been a very nice long weekend..but tomorrow it's back to PT appointments,

and OT, Speech & Dr. Webster (her physiatrist)

 

 

 

Hope everyone returns safe & sound to work..

let's start this all over again! :)

 

 

 

 

 

Love,

pattie & gary, Grace & maxwell



Fireworks of our own!

Happy 4th everyone!!

 this was July 4, 2012

 

And this was yesterday..at the Mattapoisett Road Race..

 

 

 

  We went to a cookout at Uncle Ross' & Auntie Heather's..and Grace enjoyed swinging!!

As much as Abigail, & Olivia enjoyed pushing her.. :)

 

 

 And this is 15 years in the making..

here's my old roommate, Ross (on left, whom I lived with for 8 years),

and his Dad (from Australia) ..

soo nice to finally meet Mr. Hooley!!!

 

 

We had a really nice time!!

 

Got home a little later.. Grace took a shower & then..

the fireworks began..

"troublemaker" Gracie, pulled out her gtube..the entire tube!!

Panic set in for a few minutes, but then we were in the car

within a few more, and racing to Hasbro!

Her "pedi surgery" team met us..and they took good care of her..

They inserted a foley for now, and we'll be back in a week or two

to put the actualy mic button in.

Only a 3 hour round trip, trip to Hasbro...

not bad at all!!

Grace was almost all smiles while there..

And we all got to sleep til 10:30 this morning.. Gosh,

can't remember when that happened...

 

 

 

Hope you & your families had a nice 4th..and

have a great weekend!!

 

Grace has swim on Saturday.. after having to skip a few..

I'm sure she'll be very excited to get back in the water.

 

 

Happy Weekend!!

 

love,

pattie & gary, Grace & maxwell

 



23 months!

23 months.. which means in a month she'll be TWO!

Where has the time gone??

 

 

We had a follow up with the surgeon today..

Grace is doing great..gained 7 oz in 2 weeks.. the nutrition is staying in

her body!! She's in great spirits, with no leaking!

 

 

Grace weighs in at 18 lbs. 7 oz, and 31" long

She understands "everything".. if you say 'wave'; she waves..

she loves to point & grab everyone else's nose..

and she will touch her own.

Still loving music..

twinkle twinkle little star is a favorite..

and she's learning some sign language too!

 

  Playing catch... Grace loves playing catch!!

Eating a bread stick with marinara sauce.. she licked the sauce off

and sucked on the bread..

 

 

 

Grace eats dinner with us daily... whatever we're eating, she tries,

tosses, or throws :)  it's a learning process!!

 

 

Within a week or so, she will be off all meds

(two out of the three meds, she was taking to help with the acid burn of

her leaky gtube..now that she's not leaky, we can take her off those meds)

the third has been since the surgery to help move things along, and that's

going well too.. soo we are stopping that one as of tomorrow morning.

 

 

In August, she will be getting PT twice a week..

she will also be fitted for a 'stander' to help her posture in standing!

 

Our little miracle is getting there.. slowly but surely!!

 

 

 

Thanks for keeping up!

Have a safe & happy 4th of July!

 

love,

pattie & gary, Gracie & max