A Lil' Boy's Journey to Live….

3/10/09

Riley usually has speech therapy on Mondays, however, Kris, his therapist called
and she had a cold.  So we decided to cancel yesterdays appt.  Anyway……………..
around 12:30 Kris shows up with groceries.  She said since she couldn’t do therapy
she had time to go food shopping for us.  She wasn’t kidding!  She came with
more stuff then I usually buy at the food store.  I told her she didn’t have to
do that, but she said she loves us and wishes she could do more!  Kris….you
are an awesome person!  Thank you to you and to Bancroft for your kindness!
Tomorrow….Riley sees Dr. Szwast.  There is no echo or anything scheduled.
It is just a follow up from the Cath.
There will most likely be an echo scheduled for 2-4 wks from tomorrow..
At our following appt. there should be some discussion about Riley having
a heart-lung transplant.  This really is not an option, but Dr. Rome would
like to discuss it with the group to get their opinion of the pros and cons.
We have been told from the beginning, though, that heart-lung is not
 a route we want to take.  There is like a 20% survival rate.  Yeah….I don’t
think so!!!  We will see, though, what the group has to say.  For now we
are headed down the same path.  Echos monthly and Cath probably in
3 months.  Cutting balloons seem to be the best route for right now, with
the hope that the scar tissue will eventually stop forming!  That would be
our prayers answered!!!
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