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