He Will See

Every three months Luke has an eye appointment at CASEY EYE OHSU in Portland.  For the last four years, like clock work we take him.  They check his vision, eye pressures and optic nerves.

At times they have often thrown in a specialized test or two, or three to look at all possible causes for Luke's childhood onset glaucoma.  (Remembering the detailed retina testing).

This past Tuesday, was another one of our appointment days at CASEY.  It is nerve wracking.  I always wonder what news we are going to be given.  Too many times we have sat in chairs receiving news that we didn't expect to hear.  Too many diagnosis' to process.

The doctor said Luke looked good.  So good in fact that if his next round of visual fields are good they are going to back off the appointments.  We will get six months between appointments instead of three. She said she would no longer worry about Luke.  Luke's eyes will never be "normal", but the doctor is considering the possibility that Luke's optic nerves are perhaps genetically abnormal, instead of something causing them to abnormal.  Which means whatever sight he lost has been that way since birth.  And she won't expect his condition to cause more sight loss.  A MIRACLE!

Luke will SEE.  He has less of a chance of losing anymore vision with the new information coming from the doctor.  Where as years ago we struggled with thoughts about if Luke would go blind, we are now allowing ourselves to imagine a future where Luke is NOT visually impaired.

Just last week I held Luke as he sobbed, "Mom, I wish God made me different.  Why did he make me with glaucoma? You don't know what it is like to lose your vision."  It is so true...I don't have a clue what it is like, but I know God doesn't make mistakes, and HE made Luke absolutely perfect.  I just happen to have a front row seat to watch a MIRACLE being performed in the life of my son!

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!

A Blessing

I am sitting here at the computer, starring at our NEW monitor....thank you Auntie Katie. It is AMAZING!!! What an awesome blessing today to arrive in the mail. I am so appreciative. We have been using a really old monitor that you could barely see at times. And now everything is HUGE and crystal CLEAR. Thank you.

So, my attempt to keep up 2 blogs backfired. Who was I kidding? I can barely manage one, let alone two. So I imported the posts I had from the blog about Luke, and I figure you all will understand if I post a little more about him as I process what we are going through.

I have to share how proud I am of Grace. She is reading little books and doing an excellent job. She read this little book to me tonight and after she finished reading it she exclaimed, "Now I can start learning to read." I said, "Gracie you are reading!" She looked at me and asked, "I can read now? I CAN read now." Then she shouted down the hall to Luke that she knew how to read, to which he replied back, "well..you can't read as good as me." And from there, I am afraid, a shouting match between who could read and not read. Why can't they just get along sometimes? Ugh...the constant bickering is difficult on me sometimes.

Luke is still crying over the eye drops. Some nights he is a champ and some nights I almost have to wrestle him to get him to hold still long enough to insert the drops. I wish I knew some magic trick to make things better.

Bella will be 11 months old tomorrow, and I can't even comment on that :( Time is rushing by at lightening speed.