Friday, April 28, 2017

Refractionless

I don’t think that’s a word, “refractionless”, but I don’t particularly feel like being a slave to the English language right now, so I’m using it.  Today we took my daughter for a follow-up visit to see how things were going after the surgery.  You might remember from last week my daughter being completely unwilling to open her eyes, even with four of us holding her down, just so the doctor could get a quick look in to ensure there was nothing amiss after surgery.

I’d talked to my daughter about today, telling her she was going to look into a little machine that would have a red light to stare at and we were hoping she could do it so we could get her more accurate glasses.  She seemed happy to be going to the eye doctor, but for some reason when Dr. Grace came in, she suddenly got shy.  

There was some whining, a lot of wanting to hide her face and touch her eyes and mostly not a lot of looking so the doctor could see.   She wasn’t able to get an accurate pressure on either eye which she was hoping to do because she’d added Healon to both eyes to increase their pressure.   She touched them with her fingers on her closed lid and said they didn’t feel that firm, but she was probably okay.

If you want to do the test she did on your own eye, it’s easy and safe to do.  Just close your eyelid and gently press on your eyeball with your finger.   It should feel like a very firm, crisp grape.    That’s because the pressure in your eyes is normal.   The pressure is holding up the internal structures of your eye.   Eyes need some pressure.   Too much pressure can cause damage to the eye as well, as many people with Glaucoma well know.    My daughter’s eyes don’t feel like a firm grape, they feel like an old grape that’s gone a bit soft after being left in the back of the refrigerator for too long.   That’s what low pressure feels like.

There was also the refraction we were hoping to get.   Dr. Grace was able to get enough of a look at her eyes to not have any concerns, but she couldn’t get a steady enough look to get an idea what prescription she actually has for her eyes.

We’re coming back in two weeks and hope to try again.

The Big Boy Update:  My son told his teacher he wanted to invent a time machine.   She asked him where he would go on his first trip?   He said without hesitation, “1977, so I can see dad as a baby.”

The Tiny Girl Chronicles:  Can my daughter see faces?   I can’t really tell yet.   There is a lot of her vision that’s still a mystery.   I would love it if she could see what we look like.

Thursday, April 27, 2017

To See or Not to See

My daughter can see—her eye is open post-surgery, but that doesn’t mean she can see like the rest of us can see.   I’ve been getting updates from her Visual Impairment teacher and it’s not great news.   That doesn’t mean it won’t be better news when we get her lenses that match her actual refraction, but for now it’s not great.

She isn’t able to discern letters on a page, even at 48 point font.   She cried today (a first) when she worked with Raffaella and is sad because she can’t see what she could even in a clouded visual state before the necessary surgery.   But we’re still hopeful.

She prefers the “blue glasses” but I’m not sure those are the best prescription for her.   We think she likes them because the frames are blue.   But we have to go with what she likes for now.  

Tomorrow we have a slight chance of getting a refraction at her post-op follow-up appointment.  Maybe, maybe we’ll know more then.   For now, she’s working with what she has and we’re trying to help her through her limited sighted world as best we can.

The Big Boy Update:  We were talking about favorite colors in the car on the way home from school today.   My daughter’s favorite color for as long as she’s had a preference has been green.   For some reason today my son switched from blue an orange to green.    I asked them if they knew what my favorite color was, knowing they’d been told many times how I liked orange.   My son, with complete confidence informed me, “I know what your favorite color is mom, it’s tan”.

The Tiny Girl Chronicles:  There was a brief period tonight when my daughter had her iPad.  The television show she wanted wasn’t playing for some reason.  I told her I couldn’t help as I was in the middle of something else.   A few minutes later she called out from the other room, “I know what the problem is, mom––the internet has gone crazy”  

Wednesday, April 26, 2017

Cleaning the Glasses

This morning my daughter came downstairs and got on the bed.   Yesterday when she first opened her eyes she was on our bed and after looking at me and giggling, she looked down at the patterned comforter and told me she could see some of the patterns and started tracing lines with her finger.   This morning she said sadly, “mom, I can only see white on the bed today.”  

I was groggy, but this concerned me so I told her her eyes might not be awake yet and to give it a minute.   As I rolled over she suddenly said, “oh, I was looking in the wrong place.”   She had been looking at the white sheet instead of the dark comforter.   So good news she could still see, but do you get a little understanding here that while she can see some things, there is a heck of a lot she’s not visually able to discern.

Next she told me there was, “some gloop” in her eye and when I told her to be gentle with her eyes (she’s still post-surgical and healing) she decided to dab some water in her eyes to clear them up.   And then she said something she’s never said before, “I think it’s time to clean my glasses. they’re a little dirty.”

She has glasses cleaner and a special pincer cleaning tool she can use and be successful with all by herself and she remembered where it was in the drawer in the bathroom.   She took about five minutes, making sure her glasses were completely clean and then decided she most definitely needed breakfast.

She went to school today and worked with one of her Visual Impairment (VI) teachers.   I had alerted her that we’d be sending in all three pair of her glasses and if she could help us on what my daughter was seeing or which pair of glasses worked best to please let us know.

When I picked the children up my daughter seemed largely unfazed about her return to school.   When I asked her though it did turn out she and Raffaella had been testing out the glasses.   She said the blue pair (+22) were good for reading and the new pink pair (+17) were good for other stuff.   She wasn’t sure, but the old pink pair (+12) might be good for playing outside, only it was too sunny so she had to wear her old sunglasses (+4.5) and did the best she could with those.

The Big Boy Update:  My son got into an argument with his sister while my mother was over today.   I wasn’t sure, but I thought it might be because Mimi was paying a lot of attention to his sister, and less to him.   The fact that Mimi was protecting and watching out for my daughter due to her lack of vision and recent surgery wasn’t something I think he realized.   When we figured that out we had him ask Mimi if she would play with him when she was available.   Of course she said she would love to and in short order she came inside and had a nice, quiet play time just with him.

The Tiny Girl Chronicles:  When my daughter got in the car to come home from school, was she excited about going back to school and seeing her friends?  No, not really.   She wanted to tell me about the new braille book she borrowed about a circle.   She was going to “read” it to us tonight at bedtime and then she had to take it back to school tomorrow because she could only borrow it for one day.

Tuesday, April 25, 2017

I Can See Everything

This is a good post.   I’d even call it a breakthrough day.   I was ecstatic, but honestly now I’m cautiously optimistic.    The good news is my daughter has opened her eye and she can see things.   She’s not fully sighted, but she can certainly see more than she could with her eye closed and we think she has the potential to see a lot more than she did pre-surgery.    But let me go back a bit first…

We’ve been trying to get her to open her eye since surgery last Wednesday.   She has been resistant, saying her eye was stinging and everything was infernally bright.   The brightness seemed to abate over time but the stinging persisted.   We were hoping to get a refraction done at her follow-up visit on Friday but in order to do so she would have to look into a machine and look at the red dot, keeping her eye still enough for the machine to take her measurements.

This morning I took her into our pantry, shut the door and in the complete dark shined a little red toy light on the floor and wall, asking her to look for it.   I got screams and cries of, “it stings!”   She was resistant to the point I gave up after a while.    I messaged Dr. Grace and she sent back that it would be understandable if her eye stung because there was a stitch they put in that she might be feeling.   The stitch would dissolve in short order and not to worry too much about complaints of stinging.

There was another sad thing that happened as well.   My husband was talking to her, saying it was important to try and look so she could see which glasses helped more.   My daughter didn’t want to look, saying, “I can’t see anything.   This is what happened to my right eye.”

That comment gave me chills.  That was my daughter effectively saying she thought the surgery had taken away her vision and she was watching it disappear just like her right eye had.   I called her therapist with a rather urgent, “we need some guidance now” message.   Then, just a few hours later, I’d suggested my daughter use the iPad and try to “peek” whenever she could.   No pressure, I was sitting beside her working on the bed.   And that’s when it happened.

Suddenly my daughter said, “when I go further away the iPad is smaller”.  I looked up and she had her eye open.   Completely open.   I asked her if she could see and she was quite excited and said she could.   We hugged, and then she started looking around on the bed.   She could see the pattern in the comforter, she looked off the bed and said, “I see the laundry basket”.   She then followed up with, “I see the clothes in the laundry basket, I’ve never seen that before.”    She looked across the room and said, “I see the light switch.  I see the wall through the door.”    She was seeing at a distance, with apparently some level of clarity.   And then the best comment of the day—she said, “I can see everything!”

I sent a franticly excited text to the play therapist saying, “Ignore last message, her eye is open and she can see!”  I sent similar messages to her doctor, my husband and best friend.   At this point I’m so used to bad news I think I was in shock and didn’t quite know how to take it.  I think I should have been crying but I was in awe, watching her move around, watching her actually look at things at a distance.

 My husband called and my daughter wanted to hold the phone and explain what she was seeing.   She’s known there was a red hangup button on the phone before but today she said, “what are those other buttons on the phone?”   She could see the small white outline buttons for mute, speakerphone, add call, FaceTime, etc.   I explained each one and then asked if she wanted to FaceTime dad.   She did and when his picture came up she said, “I can see your face!”

For the remainder of the day we’ve been having her try on the various glasses to see which prescription works best.   That is still up in the air, but she seems to like the +17 pair the best.   To put things in perspective though, while she can see, she’s not back to normal vision.   She’s still quite visually impaired, but this is a very big improvement from what we can tell so far.

The Big Boy Update:  My son explained to me, “I’m afraid of the water…because it’s wet.”

The Tiny Girl Chronicles:  Her left eye is open and she can see.   She’s excited about it and so are we.   I’m not sure the day could have been any better for her and us.

Monday, April 24, 2017

Peanut

We are encouraging my daughter to open her eye.   She doesn’t like it.  She says it stings.  She says it’s bright.  She tells us she can only see yellow, or nothing, or black spots.   The black spots one makes sense because she has a steroid injected into her eye that might present as black blobs for a bit.      Whatever the reason, she’s not jumping back into the sighted world yet.

We wanted to get her out of the house today and decided to take her to lunch and then the pet store.  Lunch went well with her ordering “just meatballs” and my husband and me questioning the judgement of, “yucky!” once the food arrived, but she liked her meal.   The pet store next was a questionable adventure, one my husband thought I was a little misguided for suggesting.

I knew there would be fish (which she couldn’t see).  I didn’t think there would be dogs, because that’s usually on adoption days on the weekend.   I wasn’t sure what else they’d have but I was guessing some members of the rodent and avian families.   There were gerbils, mice and hamsters but they were all asleep.   There were birds, which flew around the cages quickly.  My daughter asked me to take a picture of them so she could see up close.  I did, only to have her barely glance at the phone, realizing she couldn’t see anything discernible with the changed vision in the bright light and her over-sensitive eyes.   So we moved on.

Then we found the cats against the wall in the glass cages.   She likes cats.  Her brother is allergic, but she was interested in seeing them.   There was one cat who wasn’t lounging.   This cat was so interested in seeing her, he would follow her hand back and forth in front of the cage and wanted her to pet her something fierce.  

My husband looked and the cat’s name was, Peanut, another thing my son is allergic to.  My daughter thought this was the perfect name and wanted to meet Peanut.  She wanted to play with Peanut and take Peanut home (of course).    We read the documentation beside the cages which said, “interested in meeting one of our cats?  Volunteers are here on Sunday, just go online, fill out this form and we’ll schedule a time for you to meet your potential new family member.  

So we didn’t get to play with Peanut, but my daughter is still talking about her.   She says we’re going to go back on Sunday so we can play with Peanut.  We’ll see about that…

The Big Boy Tiny Girl Play Doh Update:  We pulled down the play doh this afternoon when my son was home from school because it was something they could both be successful with.   My husband and I tried not to worry too much about the mess and left the room as they were dumping the entire bin out.   My son announced, “watch how I can make a mess!” which only furthered my prediction on the percentage of play doh on the floor versus table when they were done.   They did indeed make a glorious mess, but they had a great time, bringing food item after food item for my husband and me to pretend eat for the next hour.  On the whole, the mess was worth it.

Sunday, April 23, 2017

Little Lost Girl

My daughter’s eyes remain closed today, day four, after her cataract surgery.   She’s told us lots of things, most of them conflicting about what she can or can’t see.  We’re tying to be patient, but it’s getting more difficult to do so, knowing she’s building habits (which she is prone to do) that will be hard to break the longer they go on unchecked.

This morning she wanted to go next door to see if Madison was available.  She got dressed and then went to knock on their door.  After she left I heard from my husband that their family was upstairs watching a movie in their movie room.   I expected to hear my daughter coming back in a few minutes but it was longer and then we heard the doorbell ring instead.  

It turned out she didn’t get an answer and apparently got turned around on the way home, heading instead down the street (it’s a safe cul-de-sac) and was lost.   One of our neighbors brought her home, scared and crying.  

So it was time to talk about opening her eye and figuring out which glasses were the ones that were closest to her prescription.   I’d like to tell you it was an easy day for her and us, but it wasn’t.   We tried to take it in steps but ultimately I had to be more firm with her than I liked, telling her she couldn’t hold her eye open and had to absolutely stop touching her eyes.  

We’ve been holding off on the iPad in the hopes she’d miss it and want to open her eyes to try and see it but that wasn’t working either.   I finally got some traction tonight by making her sit in her usual watching position with the iPad on her knees, close to her face and found out (we think) that the +17 prescription glasses were the closest fit with her saying the +12 and +22 lenses made things more blurry.

Before and after dinner she watched (maybe) Transformers Rescue Bots and I think was looking out of her eye barely squinted open.  I think she can see something, so does my husband, but we’re getting “I can’t see ANYTHING!” to “I see nothing but rainbow” to “I can only see brown” at other times, mostly earlier in the time before the iPad this evening.

Tomorrow she’s said she would like to keep watching the iPad and would be willing to keep her eye open, which I think is a good sign.   Hopefully she is seeing something more than the dire reports we’re getting from her.   It’s still very hard for us to tell as I’m not able to see her track anything with her eye and she’s not overly positive about what she is seeing—a reasonable thing given her vision has been completely disrupted with the surgery.

The Big Boy Update:  My son informed us at dinner, “I think orange should be the last of the rainbow…then purple moves in”.

The Tiny Girl Chronicles:  My daughter wanted to know what a blood vessel was tonight when I was drying her hair.   I explained how blood brought nutrients to the body and she wanted to know what parts.   When we got to the brain she wanted to know how her brain stayed on top of her body and I knocked on her head and told her her skull protected her brain and her spine kept her body upright along with her skeleton.   She told me she knew what a skeleton was, saying, “a skeleton is a person who’s only made out of bones.”

Saturday, April 22, 2017

It Looks Different

My daughter still hasn’t opened her eye after surgery, or at least she says she hasn’t.   She is making progress though.    Instead of insisting all the blinds be shut and a black blanket over her head, my daughter is spending the day with her night eye patch on, not looking.

We need to get her into glasses that will correct for her vision, but we don’t know which glasses work better for her until we know more about what she can see.   Today my husband asked her if she didn’t wasn’t to lock because it was too bright.   Instead of saying yes, my daughter said she didn’t want to look because things looked different.   This means she’s been peeking at least, which I’ll take as a good sign.

I got her most sever correction lenses on this afternoon.   I don’t know if she looked a bit through them, but she wore them until bedtime.   We’re still on hold to see if she can see, but we’re getting closer to finding out if she can.

The Big Boy Update:  My son wants new Legos.  Not only is he selecting toys he wants to sell at a yard sale, he’s counting his piggy bank money as well.   He’s not close in saved money that he needs to be to buy the Lego set he wants.   We told him he could earn extra money for chores.

The Tiny Girl Chronicles:  My daughter was talking to dad, asking him to so something.   He didn’t do exactly as she had requested so she critically said back to him, “I don’t think you heard a word I said.”