Never Really Over

It’s not, but title of this post could be about my daughter’s eyes.   It’s definitely appropriate because since August 2015 it has been one thing after another with my daughter’s eyes.  Every time we get hope something will help or her vision might not go down anymore or even might possibly improve, things get more complicated.

We used to have hope.   Initially we even thought things would all get “fixed” and her vision would be back to normal.  It took us a while to adjust our expectations that her vision wasn’t going to return.   After that when we figured things would get better, back to somewhat functional, but those were thoughts we had to abandon after her eyes went more downhill and more things happened.

Today I would say it sounds a little strange, but we almost expect things to get worse.  Maybe it’s a protective thing mentally, but we don’t ever expect good news.   So when things happen, my husband and I are actually okay about it.   Is it sad?  Yes.  But that’s what the situation is.   We either adapt to it or we get depressed.  And that helps no one, especially my daughter.   It sounds strange to say we’re fine with her vision declining.   We’re not.   But that’s the reality.

Those three paragraphs aren’t at all what I was planning on writing about.   When I sit down to write a blog post I have a topic in mind and some things I want to say, but it’s not uncommon my fingers write something wholly different from what I planned at the outset.   Now let me get back to the topic of this post.

"Never Really Over” is a new song by Katy Perry.   When I have a new favorite song I have a habit of wearing it out.  I can play something over and over and not get tired of it.   I’ll tell the children, “oo, I have a new favorite song” and ask Alexa to play it.   Two days ago my daughter said, “oh Mom, not this song again” when I played it.   My daughter had heard it only two times but something changed in that second hearing and she decided she liked it too.

Yesterday Margaret and I were taking to my daughter to get pedicures together.   We’d gotten in the car and my daughter asked me to play the song.   She learns things quickly and from the back seat started belting out the lyrics.   It was so cute Margaret and I couldn’t help but smile.  This morning my daughter wanted to get donuts, and who am I to say no to donuts, so we got dressed and got in the car.

The entire ride there and back we played the song over and over.  We listened to the lyrics, talked about the vocals and the drumming.   I paused the song as we got close to home and said, “do you know what ‘down the rabbit hole’ means?”   I had a chance to tell her about Alice in Wonderland and Through the Looking-Glass, and What Alice Found There.   She asked if it would hurt when you landed falling down a hole and how Alice climbed through the looking glass.   We decided to get the audio books so she could hear the stories herself.

When I got home just now I went to Audible and got them with my monthly free credit via my Audible membership.   We’re big fans of Audible here given that my daughter can no longer see anything on her iPad and can’t play games anymore.   I can’t wait to hear how she likes the books; they’ve been favorites of mine since I was a child.

The Big Boy Update:  My son has had a lot of itching in the top of his cast area.   He can’t quite reach it with his fingers.   Jen suggested last night that we put some baby powder in the upper opening.   We did so and suddenly he started getting itchy around his nose.   I was very worried he was allergic to something in the baby powder and I was going to have to completely unwrap the cast and clean off all the powder.   We had to rewrap some of the cast already and it’s a trick to get it locked in a ninety degree angle with the wrapping alone.   Fortunately ten minutes later his nose was not longer itchy and the itching at the top opening of the cast had gotten much better as well.   This morning he seems to be working with the cast much better than yesterday when his arm was bothering him with the lack of mobility.

The Tiny Girl Chronicles:  The implant is working.   My daughter’s pressure is back to normal.   After the surgery she went from 47 to 17, which they set via fluids during surgery.   The day after surgery her pressure was 21, which is high normal.   We heard her pressure may drop in the next few days and sure enough, today her pressure was six. My daughter was worried it was going to be too low and go to zero again.   We’re not particularly worried because the implant only lets fluids out when pressure is at a certain level.   Her eye is expelling the healon and the air bubble so things haven’t had a chance to settle down.   We’ll know more when we go  back for the week follow-up.   For now, things are, for once, going well with her eye.