Tuesday, May 3, 2016

With all the rain, there is a rainbow!

So much happening lately.. I feel I haven't had time to even blog the good things happening..
Grace did have a revision surgery on her gtube on April 21st,
not 'good' to go under & be in surgery..but good as in hopefully it has helped with leakage.
Today is the first day in 2 weeks that she didn't LEAK anything..not water at school or 
her formula.. So.. yea, things are healing nicely!!

The other good thing that has come out of this surgery, is from her awesome surgeon..
we're lucky to have her.  She recommended a company who blends real food up for tubies..
it helps with digestion & even growth etc.  Food like:  chicken, brown rice & carrots; hemp, kale & quinoa
& salmon, oats & squash.  So we are trying the variety pack..

This will be tomorrow's dinner.. 

So it comes in this pack like this.. & I just use a syringe bring up 60ml (2 oz) & make it a little thinner with 1 oz water..& then we 'bolus' feed into her gtube via the syringe.
We then follow up with the rest of her 'dinner' via her pediasure..
we started using this last Thursday & suffice to say, she has been pooping regularly!!!! (with no miralax)
And I even think she's been a little more hungrier..  we'll look into a prescription & see if our 
insurance will pay for it in a month or so.. if it continues to go well!
It's very exciting!


  Our little friend, absolutely LOVES ice cream..here she is eating my favorite, Black Raspberry.  Her friend, Abby was over a few weeks ago & they had cones in the back seat.. vanilla from McDonald's..


And then in bigger news.. NO MORE CRIB!!!
Grace has been sleeping in this new big girl crib for a few weeks now.. & at first it stunk, I'm not going to lie..she had a hard time going down.. but now she's doing great.. & sleeps all night!
She likes to be warm in a very cozy blanket. 
And for how long she is.. she still curls way up in it..



In school, she's doing fantastic.. the teacher's aide is wonderful with her..
She is learning how to eat off a spoon & closing her lips around it.. 
Today, her outside speech therapist thought she said, "Oh NO" clear as day twice..
We are signing her up for soccer , maybe swim..
she walks fantastically by holding each of our hands on both sides.. walker at school AlL the time..
We are so proud of how far Grace has come!



Thanks for keeping up!
To our friends in Florida - LOVE & MISS YOU BOTH!!!



love,
pattie & gary, Grace & maxwell :)