Day +231

The past couple of days I've had to remind myself several times "it's in Georgia's best interest".. to have an MRI to make sure her leg is healing, to get an NG tube so her body can get the most nourishment, to keep telling her the new "line" is ok as she is crying about it again and again.
Tuesday was a very long day - because Georgia doesn't have a central line they sedate her with gas then place an IV and keep her asleep with propofal.  This is the third time Georgia has had gas, and it will be the last.  It's never easy watching your child be sedated but the process is made much more traumatic for a toddler who doesn't understand why a mask is being held over her face.  Georgia was fighting and crying saying no, no as I tried to comfort her - she was upset going to "sleep" and was raging mad when she woke up.  For the better part of two hours following sedation Georgia was hysterical and there was nothing to calm her - that isn't my daughter.  As she was flailing around she pulled  a few inches of her NGg tube out, when the nurse put it back down she was rightfully pissed.  I knew she wouldn't like the NG but I also knew that wasn't the bulk of the problem.  Once we finally made it up to the clinic following her MRI she was still hysterical, all of the clinic folks know her well and knew this wasn't typical for Georgia.. finally several nurses and our doctor asked what they used to sedate her, when I said, gas everyone went, Ohhh... I guess it isn't uncommon for kids to be very upset following a gas sedation.. if they go down mad, they wake up that way as well, it also leaves a feeling of being uncoordinated and fogginess which to a toddler is both scary and maddening - it would have been really nice to have this information beforehand.
Late yesterday evening our doctor called to let us know that Georgia's MRI looks "stable".. some of the abnormalities are stable and other have improved.  Her feeling is that we shouldn't need to have another MRI for at least six months - all good news.  Due to the fact that the tumor she had in October was so destructive, she had three biopsies/surgeries which caused scar tissue and that the bone is re-generating there is a high probability that an MRI will never look totally normal.
The NG has been a big adjustment for all of us but particularly for Georgia, overall it has been really upsetting for her.  She is scared when I hook her up, upset when I change her shirt or have to adjust the line at all.  Bath time is traumatic because my girl who usually says more when I am pouring water over her head doesn't want her face to get wet.  At this point she won't turn her head to the right and keeps looking at Brian and me, touching her face ever so gently saying, line?  Her body is having a hard time adjusting to it too, she has been sneezing a ton and it's clear that her sinuses are irritated.  The important thing is that so far her body seems to be tolerating the formula well, something I was fearful of with a highly allergic kiddo.  Georgia's special "caviar" of formula can only be out for four hours so we're getting into a new routine of replenishing the bag through the night.  We're working on cutting down the feed time as we ramp up the feed rate but right now she's hooked up 16 hours a day.  It's hard to see Georgia scared of this new addition but I still believe we made the right decision, her body needs nourishment to heal, grow and thrive - that is certainly in her best interest.

Blake & Lauren came over in their Team Georgia

shirts to cheer up their cousin.. it worked!