Spring Break Vacation

Grace has been home on vacation & we are lucky enough to have a great nanny..

they went to Art Lab one day together & then for a long hike in the area..(Grace went for a nice ride)

 

Here's some random pictures from the last week..

 

Back to school Monday!

 

  Loving Frozen Yogurt with my BFF, Abby!

 My friend, Dominic gave me "Sophia" the cat.. I love her!

The Gang at "Toe Jam" Puppet Band..the first Monday of vacation!

Visiting the art lab & painting..

Friday morning with Mom.. entertaining myself above & then below

I built a Boat for my Daddy..who's always talking about boats!!

  This is my little friend that visits my mom in

the yard.. we call him Max!!

 

 

 

 

Hope you are all doing well..

 

We are going on a 'real' vacation in 35 days!! Can't wait..

 

love,

pattie & gary, Grace & maxwell



Random Pictures & Updates

Grace is doing better.. here's some great pictures that have been taken in the last

few weeks.  Her gtube was checked for a leak and the mic button did have a leak

but I don't like the new manufactured mic buttons.. they just seem to be leaky..

we will keep an eye out.. but it's certainly frustrating!

 

The good news continues.. Grace is drinking lots by mouth!!

And chewing & swallowing!!

Even for school (who since September has not been on board with us to feed her), they

recently saw her drink & swallow 4 oz of water just the other day..

she has taken quite a bit of liquid by mouth..

she starts the day with 130 ml's (4.5 oz) of formula through her gtube, but

then has s 3-4 oz Yogurt smoothie!!

 

Then with her nanny after school, she drinks 4+ oz.. prune juice & water..

& lots of water..

 

She's chewing too.. different types.. cheez its, fishes..

we are looking into getting her into another feeding therapy center in the area!!

Maybe this is the start of something BIG.. we can only continue to hope & help her!!

 

 

Grace also went to the dentist for the first time on 4/10..

she did great.. our friend, Tia was with us..and & she did great on her lap..

see pictures below..

 

 

   Fun & silly times with Mommy!!

 

 

  Eating pretzels dipped in Spinach & Herb Tastefully Simple dip!! She LOVES dip.. w/ or w/out pretzels or anything to be dipped!

 

 

 

Thanks for keeping up.. she certainly is getting big..

 

Love,

pattie & gary, Grace & maxwell

 

 

 



Happy Easter..

Sorry I didn't post yesterday..it's been a long past 4-5 days here at our home..

Grace, unfortunately has not been feeling well..

seems everyone thought it was her gtube (I swear sometimes it's just easier to 'blame' that)..but this time it wasn't... My gut feeling was it was a little more complicated.. POOP..

poor girl had some terrible stomach pains last week that woke her up from

a deep sleep.. she was constipated.. backed up so bad..

An eight hour wait between two hospitals last Thursday, finally gave to some

relief..but we are watching her carefully..as she did get a little dehydrated.

 

The good news is she drank out of a cup & from a syringe like a champ

this weekend..so we are capitalizing on that!

Friday she had 20 oz of fluids & Sat, 17 oz.. that is WONDERFUL for her..

and she is now taking daily prune juice (& likes it :) & water, and even

yogurt smoothies... we'll get there!!

 

Today she went back to school & had a little more reserved/quiet day..

but then tonight she had a really big bowel movement..and it seemed

to do the trick..she was back to herself (biting, pinching dada!) lol

 

 

We are going for a gtube study test at Hasbro, on Thursday..

please keep her in your thoughts & prayers..

We just want to make sure everything is moving as it should.  She did

lose a little weight the past few days & we just want to fatten her back up!

 

 

 

Hope you all had a nice Easter..it was low key with Vevo & Vevo' for us.

 

Off to bed..as sleep around here has been rare!

 

 

Love you all,

pattie & gary, Grace & maxwell