 |
Saturday, September 20th, 2008
115 Bourbon Street
3359 West 115th Street Merrionette Park, Illinois
3:00 – 8:00 p.m.
$25 in advance, $30 at the door. Ticket includes live entertainment, food, beer, wine and soft drinks.
Cash Raffle, Basket Raffle and Silent Auction.
Donations for raffles and silent auctions
(i.e. gift cards and event tickets) can be mailed to:
Loving Lauren
P.O. Box 684
New Lenox, IL 60451
|
|
|
|
UPDATES 8-06-2008
Thank you for visiting our site and welcome to our weekly update on Lauren.
Over the past 2 weeks, Lauren had a urinary tract
infection and has recently completed the antibiotics
to treat it. We do need to bring her in to the
pediatrician to be re-tested to confirm that it is
gone. Thankfully, we just needed a fairly quick trip
to the Edward Hospital Emergency Room and not a
hospital stay this time around. Prior to confirming
her “uti”, she was vomiting a lot more than usual and
she did not sleep very well at night or during the
day. We knew that something was not right. She also
felt slightly warm, with a low-grade fever. We are
getting better at understanding her signs, since she
is not easy to diagnose. As I was walking into the
pediatrician’s office, I thought that this is most
likely a uti and not a shunt malfunction. With the
shunt malfunction, she generally stops moving
altogether and she holds her hands to her head to
signal the pain. Plus, she hates to be carried or
moved when that is happening. She still was moving
around on her own, just not as much as usual. The
vomiting would have increased a lot with both of the
possibilities, so that symptom didn’t help us rule
anything out. After the urologist reviewed Lauren’s
medical history, renal ultrasounds and VCUG (voiding
cystourethrogram) results in January of this year, she
felt that Lauren did not need to be on a daily
antibiotic to prevent urinary tract infections and
kidney damage. Lauren was on this antibiotic for most
of her life, prior to this visit. I will need to
follow up with the urologist to make sure that this is
still the case. Katelyn also had “kidney reflux”, but
her degree of severity was much higher than Lauren’s.
Fortunately, Katelyn outgrew that while she was still
a year old. The cyst in Lauren’s spine may be
impairing the signaling from her brain to her bladder,
so that can also be an issue that leads to urinary
infections. It is not something we can investigate
with urology until the spinal cyst is emptied.
We had 2 major doctor’s visits over the past week.
Dr. Grayhack is the orthopaedic surgeon who reviews
Lauren’s back x-rays every 6 months to keep up with
her kyphosis and scoliosis. The degree of curvature
can change over time as she grows. After comparing
the January 2008 to the July 2008 x-rays, he feels
that there has been no significant changes. He does
not feel that we need to push up the cyst surgery that
Dr. Tomita had wanted to do in a few months. We are
planning to get a soft brace for Lauren to wear to
support her back when sitting. At this point, we
might just try to use this during her therapies. It
will need to be customized to accommodate Lauren’s g
tube and since the position of that will need to
change in the near future, we may want to put off
ordering the brace for a little while. The other
visit was to the gastroenterologist, Dr. Nelson.
After our appointment, she was going to talk to the
pediatric surgeon directly to see if they can come up
with options for Lauren that we can all agree on. We
had included a lot of detail around the surgeon’s
point of view in the last update. They both would
like to see her on a continuous feed using a g-j tube
or j-tube to help Lauren gain weight while avoiding
her severe reflux. This feed would mean that Lauren
would be tethered to her feeding pump 20 hours a day,
since the jejunum cannot handle too much formula at a
time like she would get in a bolus feeding in her g
tube. This is not a workable solution to us given her
high activity level and developmental progress and it
is not feasible to me when she can unplug her tube and
does this to get away for the few hours a day that she
is attached to it already. Then, the formula in her
stomach all leaks out and it does not help her gain
weight. Dr. Nelson would not like to see her get a
Nissen Fundoplication because she feels that her main
issue is with stomach emptying. This will not help
that in any way and the procedure could result in more
harm than good. Lauren’s weight had dropped a pound
while she was dealing with the uti, so that didn’t
help our case against the j tube.
On the fun side, Lauren is still talking a lot and she
likes to sing songs like “twinkle, twinkle little
star” and songs that Katelyn sings from her preschool
and vacation bible school. Lauren’s favorite word
lately is “Hannah”, which means that she wants to
watch the Hannah Montana concert that we recorded from
one of the movie channels. Watching this over and
over can get boring at times, but she enjoys it so
much that it is fun to watch her dancing and singing
with Katelyn. The upside is that Lauren is not as
obsessive about Barney now. She enjoys laying her
head on the couch and stretching out, just like her
sister does. Katelyn likes to carry Lauren around
lately and this can be hard to watch without being
nervous. They do enjoy each other so much though. In
a month, Katelyn starts Kindergarten and I know that
Lauren is really going to miss her during the day. I
am too, but I also know that Katelyn will love school
and that is best for her.
Thank you for reading our latest update. Many people
told me they were glad to get Mike’s perspective for
the last update and I agree completely. We feel many
of the same emotions about Lauren’s struggles and
victories, just not always at the same time. In that
way, we are very fortunate to have each other to keep
us in balance. Lauren is well loved by so many and we
appreciate that people care about what is happening to
her and want to see her thriving.
|
|
|
