Chronicling Julia's journey back to health after being diagnosed with a brain tumor in late October, 2012.
Tuesday, January 1, 2013
New Year's Day
my little one finally managed a smile for Nona today. She has been
having a rough go! She is still getting the hives off and on and seems
to be very agitated. I told Carrie she is probably sad and just wants
to start to do things. She will be moved on Thursday to Children's, we
think. It has been hard as so many docs are gone and everyone seems to
be in the holiday mode! I hope she gets to move and things start to
move soon. I am going over tomorrow and will see her and give as many
kisses to my girls as possible! I think that they all need kisses.
Each and every one! Amanda is ready to be home and have a schedule. I
think that Julia would like one too. It is hard for all of us with no
schedule! Julia has no fever, and her WBC is a bit lower but she
needs another blood transfusion. They don't know why she keeps needing
them at this point and think that the ng tube is irritating her throat
and such and she may be bleeding there. Bummer city! I don't know why I
feel that things will be better when the Grammies are there, but for
some strange reason I do - I guess just better because we will be seeing
them! Love you all and hope you had a great first day of 2013. It
was a very brisk but beautiful day here and we are supposed to be dry
until Sat. just a bit chilly. Love it!!! I will try to post after I see my sweet pea tomorrow afternoon. Love to you all. Grammie Jen
And a quick update from my visit with Miss Julia. Things were quiet in the PICU (words I've been told by the nurses to never speak aloud) and we were all able to hang out in Julia's room with her. Oliver and Finn loved getting to visit with her. Oliver told everyone we saw, from the security guard to the nurses that he is "almost Julia's brother." She
has grown so much, even just in the last couple of weeks since I saw
her last! She is getting stronger, too, and more control over
where her eyes track. Carrie helped her to sit up with her legs dangling
over the edge of her bed, and she was working so hard to hold herself
upright. More than anything, she loves to be held by her mom and dad. She is working so incredibly hard all the time, and in their arms she sleeps deeply and peacefully.
Wishing everyone a wonderful 2013. Thank you for your incredible support of Julia and her family.