Thirteen Hours

Today’s entire trip to Detroit and back was a total of thirteen hours.   My alarm went off at four o’clock in the morning and I pulled back into our garage at five in the evening.   My daughter is a seasoned traveller and aside from being disappointed we didn’t have time to go to the mall, she was a great travel partner.

The report from Dr. Trese today was good.   Her pressure from what he could tell from pressing on her eyes is normal (and trust me, this man knows what he’s doing with his hands, I’d trust his hands any day).  The opening he put into her right eye is looking stable, which is also good.   One thing he mentioned was that there was a separation in the cornea to the iris in her right eye.   This will disrupt vision, but we’re not sure how much vision she has in the right eye so for now it’s not much of an issue.  

The left eye he talked about scar tissue behind the retina and I asked him if that was in addition to the pigmentation behind the retina.   He said it’s the same thing he’s talking about, then said a long-worded label for the condition that I couldn’t get down.   At this point in time there is no surgical procedure to repair/remove the aberrant tissue, although he said in the future there might be.   It won’t resolve on its own, so it will cause her colors to be not true (or in some cases off).   We’ve seen this, although she doesn’t particularly mind.   Color blind people see colors differently and it doesn’t prevent them from leading functional lives, so I’m not overly concerned there.

The one thing he said that was encouraging was that he saw her eyes move in tandem, or together, and that was a good thing.  Her eyes have moved independently for a long time, which is reasonable and happens when the two eyes see significantly different views of the world.   That doesn’t mean the right eye is seeing much, but I’ll take what we can get in terms of good news.

My daughter drew Dr. Trese a picture and I had her give it to him.   We nodded and he remarked what a nice drawing it was.   She wrote his name and some other things on the page and had a drawing of him in his gown with some surgical tools in his hands.   He said, and he’s correct, it was a huge improvement from a year ago.   She can also do that from more than three inches from her face, which is what we had back then.   She got marker on her face all the time then but we had to let her use marker because she couldn’t see crayon or pencil marks.

Dr. Trese said he used to keep his patients drawings in their files but he couldn’t any more because everything has gone digital.   He said he’d have to find a spot for her drawing.

I also asked Dr. Trese about the long-term plan for drops.   My daughter gets compliments every time when it comes to drops from any person who works with her because she leans her head back, holds down her eye lid, waits for the drop and then switches to the other eye.   If you’re ready with the bottle you can get two drops in in five seconds.    But it’s a lot of drops for a little girl to endure every day.    Dr. Trese said he didn’t think anyone would have advice on that because no one has the same set of conditions in her eyes that she does.    So for now we’re still at four rounds of drops per day.

We return for another trip in a month.   Thirteen hours travel for a fifteen minute appointment.   But he’s where we need to be.   We’re glad to have Dr. Trese.

The Big Boy Update:  My son and mother went to the mall today.   He asked her how motion sensing doors work and he and she spent a while trying to find where the trigger point was for the door.   My son looked at Mimi and said to her when they’d figured it out, “you know, you’re interesting.”

The Tiny Girl Chronicles:  My daughter loves to bring home presents.   She brought her fortune cookie from lunch to dad and gave her brother the candy cane stick she got for doing drops so well from the technician.    She also brought dad home an appointment card for her next appointment since he’s the one who makes travel arrangements.