March 30, 2011
Teething is the newest phase in Josie’s life right now! Sometimes we forget the stages of “normal”
babies and things like teething catch us off guard. This has been a good stage for Josie though
as she is now sticking her fingers in her mouth in order to sooth her inflamed
gums. The fact that she allows her own
fingers in her mouth without gagging herself is monumental. She really likes her index finger and has
been toying with her thumb the past few days; we never thought we would appreciate
a child sucking on her own fingers so much!
We may be turning a corner with Josie starting to eat – this
past week she has tolerated tastes of applesauce, bananas and pears. She has gagged a bit, but has learned to
swallow the gags and once she does that, she seems pretty proud of herself and
breaks out in smiles. It is a very slow
process, but we are encouraged with a little progress. Josie is getting Speech therapy once a week
to help work on this area of development.
We met with Josie’s Neuro-Development PA (Physicians
Assistant) and she suggested that we go ahead with a g-tube (tube that is
surgically placed in her stomach) so that we can get the tube out of her nose
and that will hopefully help with the reflux and also will help the progress of
eating and swallowing. Right now the
consultation with those surgeons will not be until April 28 and the surgery
will be pending the MRI results. Until
then, we have been blessed with some fun and colorful tape to use on Josie’s
face. Since she has to have the feeding
tube, we might as well make it a little bit pretty and fun!
Josie has also started outpatient Physical therapy once a
week. We have only had one session and
by the end of it Josie was so exhausted that she fell asleep sitting up. We are going to PT today and in the first
visit the therapist mentioned using special tape on her left arm to try and
“wake up” her muscles and she also mentioned getting braces for her legs that
would help her when she is in the standing position. Not sure if all of that will happen today,
but I am very encouraged by this therapist and that she wants to get Josie to go
as far as her body will let her go.
During the week we also have an “Early On” therapist that
comes to our house. Early On is a
program through the school districts that helps kids like Josie. Josie loves “Miss Liz” and has seemed to make
progress each week that she has had this therapy. Liz works with her on PT, OT and speech from
both a developmental and educational standpoint.
We have been weaning Josie’s pain meds and she is now off
both of the meds she was addicted to (Morphine and Ativan) – Praise God! That also means we have dropped 6 syringes of
medicine a day! Josie met with her
Neurologist and is now being weaned off of one of her seizure medicines
too. This will be a very slow wean, to
drop just the middle of the day dose, it will take 7 weeks. Regardless of how long it takes, we are
pleased that she is being weaned from this medicine.
Based on the appointment with the Neurologist, Josie will
have an EEG in May, to monitor any seizure or other neurological activity. This is a routine test for brain trauma
patients.
On April 25, Josie will have an MRI. By this time, she will have had 2½ rounds of this new chemotherapy. This image will tell us if the chemo is
shrinking the tumor that has started growing into the left hemisphere of her
brain. If the chemo has worked, then our
Oncologist has given the okay to take a little break in order for Josie to get
the g-tube in her stomach. If the
results are not favorable and the chemo appears to not be working, then we are
at the end of our options for chemotherapy.
So this MRI is a big deal and it is with quivering knees we approach
this timeframe. We are praying
continuously for a miracle and for God to heal our Josie. Some days we almost forget how fine a line we
are walking with her because she seems to be doing so well from an outward
appearance. Things like this MRI bring
us back to the reality of what is going on in our little girls head and brings
us to our knees before our magnificent God.
On May 1st, we are taking a walk against
pediatric cancer. There is an 8K run/5K
walk that we have signed up to walk. All
proceeds raised from the walk will stay here in west Michigan for research for
pediatric cancer. The top 2 pediatric
cancers are brain tumors/cancer and leukemia.
If anyone is interested in doing this walk with us, you can register at
the following website – the early bird registration is done, but you can still
register for the race.
Finally, we are planning a “Birthday Bash” for Josie on July
9 from 2pm-5pm. It will be an open house
at our church and everyone is invited.
We will send something out a little closer to that timeframe, but we
wanted to start getting the word out a little early. Feel
free to spread the word to others that would be interested in coming, but might
not have facebook or get this email update.
We know many of you are too far away to come, but please know that we
appreciate everyone that has supported, prayed and just been with us through
this year of Josie’s life. We are
looking forward to a fun time of celebrating Josie and maybe, just maybe by
that time, she will be able to try some cake!
Blessings,
Marc & Darcia
