Chronicling Julia's journey back to health after being diagnosed with a brain tumor in late October, 2012.
Thursday, January 17, 2013
dear sweet angels, I don't have a ton of information as my oldest girl
is having a rough time with so many docs and people demanding her
answers to multiple questions and her little one being exhausted
mainly from lack of continuous sleep. So far she is "spitting in the wind"
about that. They don't seem to understand that a 45 min stretch of
sleep is just not doing it for a regular 2 year and certainly not for a recuperating 2 year old! The man that came at 6 this morning was so
proud that he hadn't come at 5 like he was supposed to and when Carrie
said that they were doing things to her until after 11 and then awaking
her about once an hour for suction that it just wasn't cutting it! I
get exhausted realizing how hard my little one is trying and not getting
rest! They are going to assign a case manager to her next week and
hopefully that will help give her some help with getting the various
specialists in sync and the therapy also. She thinks
that the docs are all really good, but it is just so very tiring! She
did get a bit of time with long time dear friend Leigh this morning, but
she didn't get out of the room until almost 6 this evening to try and
sneak a shower in and they said she was too late. She just broke down
and they reconsidered and let her in. YEAH for people with a heart!
Unfortunately she only got to hold Julia for about 45 minutes as she was
pretty scheduled and so many doc were coming through! Hopefully
tomorrow will be better. Terry will go in the late morning and stay
until Carole and Don get there Saturday afternoon. We are hoping that
that will give her a little break and give Terry the chance to give lots
of kisses and stories to our little one. I am so bummed that I still can't get my own kisses in and am afraid that she won't know her Grammie! Ah yes she will!!!!!
Anyway, my friends, my girl is progressing but it is very hard and we
sure need to pray that she can get some rest by being able to sleep in
the night. I know it will happen, now that they are becoming more and
more aware of it. Thanks for listening to a frustrated Grammie and
mom as she is so worried about her girls. Not to mention the third one
in Santa Rosa, at least she is hanging in and her dad and uncle are with
her now and she has the schedule of school. A good thing! Love you all, Grammie Jen