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Monday, July 11, 2011

Update on LUKE's Eyes

After a mostly sleepless night, a trip to Safeway at 12:30am, and finally drifting off around 2am, we made it to Casey Eye.  After rushing because we got lost (go figure we were there two weeks ago), we still ended up waiting nearly 45 minutes to be called back.  We worked with 6 different people (2 nurses, 2 doctors, 1 resident and 1 student in medical school).  OHSU is a teaching hospital so it is common for students/residents/interns to be present at your appointments.

We had one hour of eye testing with Luke, checking of the eye pressures, his vision, etc.  Then we had one hour with the genetic counselor where I got to re-live Luke's medical history/ developmental history/ educational history/ family history etc.  About 15 minutes in to the history, I had Mark take Luke out of the room because they were asking questions about his birth and early life that he doesn't need to know yet.  He of course knows he is adopted and his history through Grandma Carol's (first foster mom) and then to his forever home (us), but he doesn't know that he nearly died, and all about his failure to thrive and such...so at that point I excused him and Mark from the room to go play.  I am really good at speaking up and making sure Luke's best interests are protected, and that his needs are at the fore front of all his medical care (just part of being an advocate).

We made it through the family history and the Dr. Mark Penessi came in.  Apparently he is a retina "genius" and the #2 doctor in the nation when it comes to retinas.  Didn't know this prior to the appointment.  He gave Luke a thorough eye examination, and then shared the results of all the testing they did.  We are HAPPY to announce that Luke's retinas are NORMAL and HEALTHY and his retinas are NOT what is causing the vision loss.  On the down side...we still don't know why he has lost so much of his peripheral vision (his vision loss pattern is not following one typical of Luke's stage of glaucoma.  Although it is possible for this atypical pattern to present in glaucoma, it is just not common.)  So....next appointment is August with Dr. Edmunds back at Casey Eye on the Waterfront.  We are just so THRILLED that this was a GOOD NEWS day!  Thank you Lord for your provision and hand on Luke.

I am exhausted, my body aches from being so tense and nervous about what was going to happen, plus I haven't slept well in four nights.  Friday night Bella threw-up, Saturday night Grace was up screaming with ear pain, and last night I just couldn't relax.  Of course as I got everyone ready for bed I noticed Bella was warm. Took her temperature....101.0  Great!!  What is next?  I don't feel like I can even handle an ear infection at this point.  Maybe it will be better in the morning after I have had some sleep! I appreciate all your support and prayers.  It means so much to me to read everything you all write.  It is AWESOME encouragement!

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