October 27, 2010
It has been a week since we weren’t sure about the future of
our baby girl. She has come a long way
from then and has continued to be the little miracle baby. This week has been a blur to us, but
throughout each part, we can feel the presence of our mighty God. We have had many times of sorrow and grief
and just waiting for the next moment.
That is when He has sent us friends to hug us and love on us and sent
family to comfort us and to help us sit through the long hours of waiting. We have felt the many hundreds and thousands
of prayers sent up for our dear lil’ Jo.
We are still unsure of the future, but God has preserved this little
ladies life and I am sure He has been rejoicing by the amount of intercession
that is being done on her behalf and on our behalf. Thank you!
So how is Josie doing?
She is one tough cookie! We
posted on the wall that she was able to get her breathing tube out on Monday
and was given a little air cannon that fit in her nose for extra oxygen. Then on Tuesday they stopped the oxygen
because she was doing everything on her own.
They decided to stop the oxygen in the midst of the Tornado warnings –
it helped to not have one more thing to worry about as she was being moved back
and forth from her room to the hallway.
Oh, what chaos!
On Tuesday they removed her arterial line, an IV line and
her catheter (too much information? – she’ll be so embarrassed later on in life
when she reads these!). She still has
her central line in her right shoulder area and will continue to have this line
for medicine administration. They
started her feeding tube feeds on Thursday or Friday night (time runs together
when you are at the hospital) and she is up to full feeds and handling them
well. Many of you knew she had severe
reflux problems at home and starting her feeds up made us a little nervous that
she would begin to reflux again. So far
that has not been the case – Praise God!
Today was a busy morning – the doctors and therapist all
seemed to come in a steady stream. They
included: Neurosurgeon and his PA, Neurologist, Physical Therapist,
Occupational Therapist, Speech Therapist and then to top it all off, she ended
up having an EEG. She was a tuckered out
little girl! The best part of those visits
was the Speech Therapist – she started messing with Josie’s mouth – of which
she didn’t like one bit at first. Then
she calmed down and actually seemed to enjoy being messed with for once. The last thing the Speech Therapist did was
to try a pacifier AND JOSIE TOOK IT! We
were so amazed! We haven’t been able to
give her a pacifier since August because her gag reflex had become highly
sensitive. I have now given it to her
several times today and she keeps taking it – amazing!
As I write this, Josie just had another seizure – not sure
if it was the busy day or the nurse was given the go ahead to turn her more on
her right side (the side where the tumor is) than she has been and if that jump
started something in her brain. Not sure
we’ll know the answer to that one, but it is what it is – poor kiddo! Not an easy thing to watch.
Josie’s case goes to the tumor board on Friday and from
there we will hopefully find out more of what is to come. We know that they cannot do anything until
she is more healed and that is at least another week away (usually 2 weeks
post-op). This tumor is aggressive, so
they can’t leave it alone for too long, but she has to be stronger before any
other procedure.
We are feeling the weariness of this week – we are both
tired. Pray for Josie, pray for us, pray
for our girls, who are being shuffled around a bit.
Blessings and good night,
Darcia & Marc
