Caden has been doing great lately. He is scheduled to
visit a new pediatrician on Thursday. We have not
been very comfortable with Caden's current
pediatrician and the staff at their office. We have
been working for weeks trying to get a note to the
insurance company for in-home nighttime nursing
assistance for when I travel. Sherry is not able to
handle it on her own...for too many nights. She
actually ended up without a nurse last night. Sherry
did make it through the night, but she was wiped out
by this evening. She was supposed to get a new nurse
last night because the one that came the two days
before did not work out. To get back on track here,
we are trying to get the pediatrician's office to get
the required information to the insurance company so
that insurance will start picking up the tab. Right
now we are paying out of pocket. That hurts, real
bad. We hope to have all this insurance stuff worked
out by the end of this week. I go to Colorado for
the entire week next week. I have been in Utah for
several days this week.
We recently received a package from CHOP (Children's
Hospital of Philadelphia) that provided us with a ton
of information on the 22q11.2 deletion diagnosis. We
are planning to visit CHOP in the near future to have
Caden seen by the 22q clinic up there. CHOP has done
more research and treated more people with the 22q11.2
diagnosis than any other hospital or clinic in the
world as far as I know. We are very impressed with
the accuracy of data that we have seen from them as it
relates to what we have seen with Caden so far.
Caden is also scheduled for another modified barium
swallow (MBS) on Friday of this week. We expect Caden
to show remarkable signs of improvement during this
test. This test basically tests Caden's ability to
swallow.
I will keep you posted in the next few days to let you
know how things went with the MBS and the visit with
the new pediatrician.
Have a great day. God bless you.
Hank O
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on Thursday, February 17th, 2005 at 3:20 am and is filed under Uncategorized.
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