The Tea Party Process

I had said I was going to give some positive thoughts about my daughter’s vision today—or did I say that yesterday?   Either way, the list of things, thoughts, observations and information about my daughter seem to happen faster than I can put them down here at the end of each night.   Tonight I’m going to try and do a catch up on multiple topics about my daughter and her vision.

The Tea Party Process
My daughter got a tea set for her birthday.   She was ambivalent about it for a while but of late it’s all the rage.   She wants to play tea party with you and pour you tea (water).   She wants to serve you food (Cheerios) and have a conversation all about the process of having tea.   Tonight I had tea with her and watched her, as a blind person, serve tea.   She carefully lined up the cup and then poured some water into it.   She didn’t know how much, if any, water came out so she put her finger into the cup to check.   If there wasn’t enough, she’d repeat the process until you had enough tea or cream or sugar.   I’m not sure how much of the tea party was visual-based, other than the colors which she can tell.  As long as you don’t mind a finger in your tea you are welcome to come over and join us.

The Hide and Seek Observation
This also happened tonight.  My daughter wanted to play hide and seek.   She’s pretty good at hiding, although she likes to call out to you as soon as you’re done counting because she wants to make sure you have help finding her.   When it was my turn I went out into the hall and hid one pace off the main hall in the direction of the guest room.   My daughter came out and ran up and down the fairly dark hall and had no idea I was there.   She called out and I didn’t answer.   She asked my husband and son if they had seen me go down the hall, but since they were on the floor below, they didn’t have helpful information.   She called out to me again and when I didn’t answer she said, “daddy, I’m scared.”  (This being scared is new.)  I whistled to her and she came towards me but walked by.   I whistled again and she opened the linen closet door three feet from me and didn’t see me.   I whistled a few more times and she ended up standing two feet from me listening, but not seeing or trying to look for me.   I whistled again and she found me then.   We played a second game where I told her I’d be in her bedroom.   She came to find me after counting and immediately turned on the lights.   She walked past me twice before noticing me.  She didn’t seem scared this time because I told her where I’d be hiding.

I Didn’t Feel It
Her wording is changing.  My daughter asked me this evening if I knew where the scooter was.   I told her it was probably in the corner in the dining room where it usually is parked.    She replied, “No, it’s not there.  I didn’t feel it.”

Fold or Tear?
We saw my daughter’s pediatric ophthalmologist and had an opportunity to talk to her about what we all thought the future of my daughter’s vision was going to be.   No one knows, but I did take solace in some of the things she mentioned through the course of our conversation.  When Dr. Trese did his initial EUA on my daughter he showed us a picture of what he thought was a large retinal tear in the left eye.   Torn retina means permanent cell death and no vision in that area of the retina.  Dr. Grace said he had told her he was going back and forth about that particular thing and had wondered if it was part of the folding process and not a tear.   Dr. Grace said in all the EUA’s using contrast they did on my daughter they never saw any indications of tearing.   So we’re hopeful about what we’ll learn at her EUA on February 1st.

Spherophakia?
Dr. Trese measured many things about my daughter’s eyes, one of which indicated she had spherophakic lenses, meaning they are more spheroid instead of lens-shaped.   Dr. Grace said there is a possibility her lens is less-spheric when her eye is at normal pressure and isn’s so shrunken due to the low pressure.   We’re hoping if Dr. Trese can increase the pressure in her left eye in February that her lens will stretch back out in small part and won’t need to be removed.

Two Inches of Paperwork
Jane, the visual impairment specialist received a copy of all the medical paperwork associated with my daughter’s care by her doctors at Duke.   She said it is about two inches thick and goes through all the things they worked through to eliminate and investigate in trying to find a diagnosis.    She said she would be glad to hand over the paperwork to us now as she no longer needs is but we should be warned, it’s not light reading.

When Do We Correct the Right Eye?
I can’t get an answer on this question.  It’s mostly because there’s not a known answer but I’m anxious and I want a plan so I keep asking in different directions.   My daughter has no natural lens in her right eye.   The hope is the retina is seeing things and healing, but without a lens, she can’t make sense of them.  Getting a refraction could be changing based on how the retina has laid down (if it has) and the silicone oil in her eye will make getting an accurate refraction difficult.   Dr. Grace also said her non-dominant eye (right) is not going to be seeing much with the left eye functioning as the primary visual input because of how the brain works.   But we’re worried about amblyopia and we also want to know how we’ll know if the right eye can see if we don’t get some sort of correction on her eye?   I’ve even asked the questions saying, “can we get in the right direction with glasses?”   My thought being that less-fuzzy would be better than wildly fuzzy.   At some point we need to find out how and if she’s seeing in the right eye, but when and how?   I don’t understand that part yet.    On an up note though, she seems to be bothered by bright lights in the right eye.   It seems to be a change.   This could be a good sign.

Final Thoughts
Dr. Grace was very kind to answer all of our questions.   She seemed to have high hopes for how things were going and said we were in the right place with Dr. Trese.  She also said as we left that children had an amazing way of recovering from things from her experience.    We are hoping my daughter is going to be another one of those amazing children.

The Big Boy Update:   I don’t know where my son heard it, but he’s been saying, “epic!” when something happens that he likes.  

The Tiny Girl Chronicles:  My daughter was with my mother on Friday while we took my son to see the eye doctor.   She asked where Gramps was and my mother explained he had to take his car to the shop because the battery wasn’t working.   My daughter thought about it and then asked, “if his car won’t work, how did he get it to the shop?”