December 9, 2011
Christmas is almost upon us and what a different Christmas
this will be for us from last year. We
were in and out of the hospital at this time last year and Josie’s MRI in January
had showed us that the particular chemo she was on was not working like they
wanted it to on her tumor. Now fast
forward 10-11 months on a new chemo regiment and the tumor is still there, but
responding to this chemo (as of August’s MRI).
Praise God for this encouragement.
Josie will be having another MRI in January (date not
scheduled yet) and we will see then what the tumor is doing. Our prayer is that the tumor will be
drastically reduced and we can have a better management plan of what needs to
happen next. At this point, her doctor
has scheduled us for 6 more months of chemo.
We haven’t posted in quite a long time and you can assume in
these quiet times that things with Josie are going fairly smoothly. But…since we haven’t posted in so long, here
are some highlights of what has been going on in her life and ours.
Many have asked about Josie’s reflux issues and many have
told me that they are praying specifically for this problem. Thank you!
Reflux continues to be the outward sign of the many complicated issues
going on inside Josie’s body. We have
been told that her reflux may be caused by neurological disconnects and that it
may not respond to typical treatments.
We have also found that reflux is cyclical, which means at certain (or
uncertain) times Josie will have a break from her reflux and then it will start
again. We experienced one of these
breaks for about 3-4 weeks in October and November. We thought that a new med we started her on
in October was the answer, but now realize that it was coincidental to the end
of a cycle. After her reflux started up
again in mid-November, the doctors had us up her dose of this new med. Now we know the medicine does work and has minimized
her reflux, although it has not stopped it.
The other significant aspect to this new medicine is that the
med is typically prescribed to help low tone in muscles. In Josie’s case, the med was not prescribed
for that purpose, but we have seen a huge improvement in the movement of
Josie’s left arm since starting the medication.
We count this as a real blessing and we think Josie does too! She is so pleased with herself when she gets
her left arm up and can clap or pat it with her right hand. We have started Occupational Therapy for the
left arm and our hope is that we will see some real progress in movement and
strength.
The newest development is in her mobility. She has learned the fine art of rolling over
– from her tummy to her back. At times
she needs a little assistance, but is starting to do it all on her own. The pride in her eyes is priceless when she
finally gets herself over and realizes it was her own strength that rolled her
over. She also wants to get moving in
the worst way. We have been working with
her by putting her on her hands and knees.
As soon as we put her in this position, she starts rocking herself as if
she would like to crawl. Her left side
is weak, so we are supporting her the whole time she is in this position, but
she is getting stronger and hopefully she will be able to support herself
soon.
At Physical Therapy, they are working on getting her body
moving and they are doing that by making her walk on the tread mill! When the therapist told me she was going to
put her on the tread mill, I was a bit skeptical, but they have this cool
harness contraption that Josie kind of hangs from this while the therapist
helps her move her feet. She really
likes this exercise and is starting to put a little effort of her own into
moving her right foot, her left is going to need more support and help.
If you have seen pictures of Josie lately or seen her in
person, she is now sporting a pretty pink helmet with lots of butterflies on
it. Josie’s neuro-surgeon prescribed a
helmet for her to wear to help shape her head as well as keeps her soft spot
safe. When we went to Mary Free Bed to
have her scanned to get a helmet made, the orthotist was a bit uncertain of how
to do a helmet for her because he has never made one for a child that did not
have part of their skull. He was also not
sure that a helmet would even mold her head, since most babies are between 3-8
months for the best possible shaping time and Josie was just getting fit for
one at 15 months. We just had her first
size check and her head has moved 3mm in just 2 months time! It’s working!
We were worried that Josie would absolutely hate her helmet,
since she really dislikes hats on her head.
As I was on my way in to the first trying on of the helmet, I realized
that I had not given this fear/worry over to God and right then and there gave
it to Him. The orthotist brought in the
helmet and from the very first time he put it on her, Josie LOVED it! As soon as it was strapped on, she took her
little fist and banged on it and then broke out into huge smiles! Answered prayer!!! She wears the helmet 23 hours a day and she
has not cried a bit about it.
As for teaching Jo to eat, we moved our therapy to Mary Free
Bed’s feeding therapy program. The
therapy started in September, with therapy twice a week. This past week Josie was discharged from
therapy. Josie hasn’t learned to eat yet,
but we have learned a lot along the way of how to help get past the aversions
of touch to her mouth. Food is going to
come down the way for her. Since she
gets chemo every two weeks, we were going one step forward and then one step
backwards because her stomach would get rocked from the chemo and we’d have to
start the process over. We feel we have
been given the right tools to continue on without therapy and can maintain the
things we have learned. Plus…that free’s
up our schedule quite a bit, which is refreshing for a change.
Josie is developing in such fun ways right now. We had mentioned previously in a post that
she was starting to say “ma-ma”. Then
within a day or two of that post, she regressed and wouldn’t say it
anymore. So much for a proud
“ma-ma”! Now in the past few weeks, she
has started to say it again and this time we can tell she understands that she
is communicating with us.
Her personality is really coming out as well and we have
found that this kiddo has quite the sense of humor and is a bit
mischievous! She will grab a toy on her
high chair tray and wave it around while we watch her and then as soon as we
aren’t paying attention anymore, she throws it overboard and then smiles and
laughs at the “trick” she just played on us. I remember our other girls going through this
stage, but for Josie it is a real milestone for interacting with us.
Time to bring things to a close, I could go on and on about
the many aspects of this sweet baby. We
are so thankful for the progress she has made and the loving nature that she
has throughout all of the things she is going through.
We are looking forward to a wonderful Christmas of
celebrating another baby – the most important baby, Jesus. We couldn’t be where we are without Him. We are blessed!
Merry Christmas,
Marc & Darcia
