September 4, 2013
Josie's scans are stable!!!
Praise God!
The phone calls from the oncology office are so brief,
"Hello, is this Josie's mom?"
"yes"
"The doctor wanted me to call and let you know that
Josie's scans are stable - no changes from the last one."
"anything more we need to know?"
"no, nothing more.
Glad I got to be the one to share this with you. Have a good day!"
That's it. A phone
call that can make us sing praises or it could make us cry. We are thanking God for the singing praises version.
We appreciate the many prayers that go up for us at these MRI
scans and so many other times. Josie is
an amazing kid and she is a miracle child - we can't wait to see how God
continues to use her life.
Since I am writing, I will give you a few more glimpses of
how Josie is doing and how she is developing.
We have a big 3 year old now - her birthday was in July and
we had a quiet celebration with family as Marc was leaving for Malaysia
the day after her birthday. Thankfully
he is back and had a good trip with many cultural experiences.
This fall we have decided to put Josie in a special needs
preschool at the Campus Early
Childhood Center,
a Ken-o-sha school. She will attend 2
days a week, although it is a program that runs 5 days a week. With all she has gone through, 2 days a week
is about all we're willing to do, plus she is in multiple therapies a week,
which would be too much for her.
As for her therapies, she has weekly Physical and
Occupational therapy at Spectrum Pediatric Rehabilitation. She loves her therapist and at this point in
time thinks it is just a weekly play session.
Josie is doing much better at walking with assistance on her left leg,
which means it is getting stronger. She
now has a daytime brace and a nighttime brace.
The nighttime brace is not going real well yet, we are working on it,
but it usually gets taken off sometime during the night by me or Marc because
Josie wakes up crying from it. We'll
keep working on it and she will hopefully get used to it. Josie's left arm is making progress, but
tends to be the weaker extremity. She
still does not use her fingers on command, but she is starting to stretch out her
arm more and will actively try to do things with it. She will have botox again in her arm later
this month. We did see some good
progress after she had her first injection.
We had a Feeding therapy evaluation last week and the
evaluator believes she is starting to make good strides toward eating by
mouth. But in order to make progress,
she needs to have Feeding therapy twice a week.
Oiy! Everything adds up to a busy
week for Josie, but we feel like this is a good step for her and will hopefully
give us the tools to keep moving in the direction of eating on her own and not
with a feeding tube.
If you have seen Josie in the past 3 months or so, she is
now sporting cute little pink glasses.
Anytime someone sees her in her glasses for the first time, they always
comment to her "I love your glasses!". She has heard it enough that she now points
to her glasses and tells you that they are pink! We are so thankful for her glasses. She keeps them on with no problems and we
think she keeps them on because she can just see better. Her last eye appointment, which was just last
week, showed only a slight change, but not enough to change her lenses. This is good - means her glasses are doing
what they are intended to do.
As for Josie's personality.
She is something. Her vocabulary
has ballooned, enough that she can tell us 4-5 word sentences. Her favorite thing is to tattle on her
sisters (although things happen while the girls are now at school, so I think
she is just making stuff up!). The
latest story is this, "Reesie, she bonked me, bonked my head" and then
proceeds to show you how her head got bonked.
The first time she said this, it was in the afternoon and Reese got a
surprised look on her face and said, "that was this morning that I did
that and it was an accident!".
There is some truth to what Josie is telling us. Along with all the words she says, she also
says a lot of jibber jabber. She will
have a conversation with anyone and everyone, about what...only she knows!
There is so much more that I could tell you about this
little lady, but it is getting late and I am exhausted from running her around
today.
Thank you for lifting Josie up in prayer and being there
with us - we are so thankful.
Blessings,
Marc and Darcia
