It Started With a Cat: Part I

This is the story of my daughter's vision loss...up to now.   And while the title of this post is about the first real incident when we knew something was dangerously wrong with her eyes, we did have information prior that was a warning of things to come. 

My daughter was born with beautiful, light blue eyes.  She seemed to have completely normal vision for the first two years of her life although in retrospect we might have taken more note of how she wanted to be close to things to see when we read stories.   She failed the free vision test given at school at two and we ignored it because she seemed to see fine.   The second-year she failed we decided to have it checked into. 

We were fortunate to be connected to a premier pediatric opthalmologist at the reputable Duke Eye Clinic.  After not being able to figure out what was going on that caused my daughter to do so poorly during her exam, Dr. Grace opted to take her into the OR to do an "Exam Under Anesthesia" or EUA.   It's hard to get a three-year-old to hold still and some of what she needed to do wouldn't be tolerated by a child. 

That first look at my daughter's eyes told us so much, but we didn't think it was anything important or dangerous.   She had multiple congenital malformations.   Her eyes were abnormally small, called microphthalmia.   She had a webbing of vessels that should have receded during gestation but for some reason persisted.  And she had poor vasculature, something that would make it hard for her eyes to thrive. We found out later she also had spherophakic lenses.   But what did all that mean as far as my daughter's vision?

It explained a lot.  Her lenses were more like a marble and less like an almond.   It's easy to flex an almond shape and this is what happens when we focus on different things.  My daughter needed to see up close because she had very little ability to focus.   The web of vessels over her field of vision was an odd one, and was quite uncommon.   It was like having a haze over her vision.

"So what glasses did we need to get to fix her vision," we asked.  This was the first in a series of hard answers we got with my daughter's eyes.   Glasses couldn't fix what she had going on.  We all tend to think glasses will solve any vision problem, but that's only because the vast majority of people can have their vision improved or corrected with glasses.   But it doesn't fix everything.

The bad news (that we largely dismissed because surely nothing could really be that wrong with her eyes, right?) continued.   The vessels in her eyes weren't normal and it could cause problems down the road.  And also, the congenital small eyes had a high correlation to blindness.   

We did nothing and things were about the same with my daughter needing to get close to see things, but being able to see nonetheless, until one day we were at a Practice Thanksgiving at a friend's house.  As we were preparing to leave, my daughter asked where the cat was?   She loves cats.  We pointed and told her the cat was on the sofa right over there.   Only she couldn't see the cat.

In the next few days my husband told me suddenly that my daughter's pupils weren't round.   I didn't believe him.   I looked and was shocked.   Her eyes were not only not round, it was like they were blowing out from the inside.  The blue was disappearing and turning grey.   We called for an emergency appointment with the same doctor we'd seen earlier in the year and fortunately, she got her quickly into the office.  

When she saw my daughter's eyes she scheduled her for the OR immediately.   She had no idea what was going on externally and she couldn't see well inside her eyes for some reason.   Knowing now what I didn't know then, the speed with which she got my daughter into an OR at the Duke Eye Center with multiple specialists is astounding.

When Dr. Grace came out from the OR, she told us there was a fairly severe infection in my daughter's eyes, clouding the internal eye structure.  This was one of the reasons they hadn't been able to see much at her office.   Had she been sick?  No, she hadn't been sick at all; this was August of 2015 and we hadn't had any summer sickness in our household at all.   She told us she had what was known as a "serous type" retinal detachment in her eyes.   The infection had caused fluid to build up behind her retinas and they had detached as a result.   

The thing is, none of this was a known thing to happen to children's eyes.   Having a serous detachment was rare.  Having it happen to both eyes at once was highly unlikely and having it happen to a child was unheard of.   They needed to find out more and wanted to know if more was at play than just my daughter's eyes, so they admitted her to Duke hospital for a full workup. 

Over the next three days, we had discipline after discipline come to talk with us, run tests, take scans, examine her, withdraw blood and spinal fluid, and in general try to come up with a cause.  There were fellows and interns coming in and asking questions, doing research, and hoping to be the one to put some unknown puzzle pieces into place to explain why, which might lead to helping improve things. 

In the end, we went home with her eyes in the same, broken state and not a single answer.   Everything else with my daughter was healthy.  Her retinas remained detached with no way of removing the fluid behind her retinas and without that, the retinas couldn't hope to reattach. The only thought was, and they admitted this was a guess, that it was autoimmune related.  

For months we had autoimmune medication intravenously given to my daughter every two weeks.  She had eye drops to help with the infection, which receded fairly quickly, although the detachment situation remained unchanged.   She had an EUA in the OR every two weeks with more doctors looking in on her, checking to see if they had ideas or if anything had changed.  They injected Avastin in her eyes to remove some of the errant, "bad" vessels in the hopes the bigger ones would provide better oxygenation to her eyes.   But other than look, they couldn't do anything.   

This ends what I'd consider the first chapter of what happened to my daughter's eyes, starting with a cat she couldn't see on a couch.   Tomorrow I'll go into what we did next and how both hope and realistic expectations are something you can have at the same time.   

The Plug

My son was getting in bed two nights ago and complained about the lights being too bright.   He was in what I'm going to call, "one of his moods" where he talks in baby talk and basically needs to be mollified and made to feel loved.  At the point he was complaining the rather dim light from the door being opened had blinded him, he said. 

The only lights he liked, he further explained, were nightlights.   And did I have any nightlights?   Like those ones I used to have in their room from years back.  I did, and they were in a drawer in the closet so I went to find some.   

Turning on the closet light sent him into a new round of cries of bright lights and ocular pain, but my search was swift and I returned moments later with a purple night light with butterflies on it.  I bent down to the outlet in the corner of his room where the laundry basket was kept and felt for the outlet guided by the light from the street lamps in the road. 

What I found wasn't the socket holes, but rather one of those plastic covers parents get when they have a child and are worried things will be poked into them and their child will be electrocuted.   Some children are inquisitive in this manner, mine were not.   Still, though, I thought we'd found all the plastic bits by now and handed them down to the next recipient of a newborn baby to their family. 

We got ours from Aunt Rebecca and Uncle Dale and they served us well for many years—too many years as evidenced by the one I found the other night.   I have it sitting on my computer here under the monitor, to remind me it's been a long time since I had toddlers relatively speaking. 

The Big Boy Update:  I visited my son just before coming to write this blog post here.   We had had a discussion with him about screen time—a common theme with him—before he headed up to bed.   I finished a long-overdue braille class submission and then I went up to say goodnight.   He and I chatted for a bit with him wanting to know about how he and his father played Minecraft together for a while today.   While I was sitting on his bed and listening I realized I was leaning back on something uncomfortable under the blankets.    I asked him what it was, suspecting I knew the answer.   He sheepishly brought out his Switch.   And then his headphones.   And then his iPad.   I laughed good-naturedly at him and he realized he wasn't in trouble—this time—so he calmly told me which ones were on the brink of dying battery-wise as I took them after giving him a warm hug and kiss on my way out. 

The Tiny Girl Chronicles:  My husband and daughter finished a large LEGO project today.   It was a bit of a challenge getting her to put the pieces together, but the effort paid off because she understands LEGO pieces and how they interact far better as a result.   The model is a working roller coaster.   My daughter was so excited to show it to me.   She could crank it around and up the initial slope and then listen to it glide all the way to the bottom again.   She showed me the fast launch and brake features as well as the cotton candy stand, ticket sales office, picture camera for in-ride photos you bought at the photo booth after your ride, pond, frog, bird, a sign that said Coaster, and many, many other features of the model.   She knows so much more because of the hours she and her father put into it together.   Next, she wants to do the Ferris wheel, she says. 

The Teeth

I have been busy today with someone's teeth.   I have no idea who the person is, but I've been working with their teeth, or rather a mold of their teeth.   My neighbor, who is also our dentist, sent me an email today and asked if I could do some different prints of some teeth he had to test if the type of 3D printers I have would work for his office. 

Typically, dentists use the type of printer my husband has, but they're messy and our neighbor doesn't like dealing with the resin.  The question is, can an FDM printer print with the same level of accuracy as the SLA printers for the needs he has?

It is possible, but there are challenges, getting the portions of the molds appropriately supported so they print accurately.   Any supports added add a level of cleanup and post-processing to get the model clean.  It's a tradeoff: lots of supports make the model very accurate, but the more supports added, the more post-processing needed.  And since the model needs to fit perfectly in the client's mouth, accuracy is important. 

Lots of models don't need any supports at all to print.   The issue is that the plastic is laid down layer after layer and with teeth, the geometry necessitates lots of supports.   So today I printed the set of teeth four times and have made progress on getting slicer settings that might meet the needs my neighbor has without without the mess of resin printing. 

Tonight I'm kicking another tooth print off and then heading to bed. 

The Big Boy Tiny Girl Wrestling Game Update:  I have no idea what the children are doing these days, but they're playing this wrestling game while my son plays "cool" music on the television.   The good news is, they're not fighting.   Sometimes there are injuries, but they're not intentional...usually.   It's another game called, "the game" and I'm glad above all else that they're playing together during this boring time when friends aren't around and aren't bored of each other or are fighting because they're bored.  

Emails and Eggs

Distanced learning has taught my son lots of things.   I don’t believe my son would have an email address or know how to send things to the printer were it not for distanced learning.   Only a few weeks ago in December my son was struggling on how to get to email and what to do to find and open messages.  Tonight before bed, I asked him if he’d gotten Mrs. Grace’s email about the materials he’d need to brung to his art class tomorrow.   He nonchalantly said, “yeah, of course.”

Just last week my son was also completely distraught about printing something he’d gotten in an email.   He was getting agitated and upset.  I told him it wasn’t hard at all and that he could print from the computer at the table where he said.  I showed him how and then told him he could go get the printed page from the printer in the basement.   Today, I saw him come to the basement during school and asked him if he needed help.  As he took sheets off the printer he said with casual confidence, “no, I was just printing something.”

My daughter got a Kitchen Explosions kit for Christmas.   That may not be the exact name, but it has all sorts of fun things to do in the kitchen as cooking experiments.   Today, she and Blake worked on coloring some eggs.   They hardboiled the eggs and then cracked the shells all around without removing them.  Then they put the eggs in bowls with the food coloring.   The coloring seeped through the cracks and made a different fractured pattern of lines matching the cracks all over the egg itself. 

After an hour they removed the shells to find the colored eggs.   They made purple and orange eggs.   My daughter and Blake came to find and show me what they’d made.   My daughter asked me which one I wanted and after I picked a purple one, she brought me some salt and pepper to eat it with.  

My daughter had a lot of fun doing this food experiment, dying the eggs to have a pattern show on them.   And she couldn’t see any of it.  She has a level of flexibility and tolerance I don’t always appreciate. 

Tonight, we had a package arrive from our friend in Norway.   It was a collection of country-specific candy for the whole family.  My daughter was frustrated as she touched the various packages and said, “it's that everyone knows what the things are because they can see the table and I always have to ask what the things are.”

I told her that in this case, we didn’t know what things were either because we couldn’t speak Norwegian. We spelled some of the very long words and tried to guess what things were.   

The Big Boy Update:  My son got in trouble just before bed and stormed to his room.   My husband got in trouble (with me) because I told him after taking care of things this afternoon with the children while I had a nap I would get the two rowdy children to bed but he appeared upstairs only a few minutes later.   My son, still angry that his cries of, “my sister hit me” weren’t received well after he tackled her, wrote on a piece of paper “Visits Welcomed, GB” and threw it downstairs over the bridge meeting the requirements loosely of, “only paper airplanes and laundry can go over the bridge.”   When I came down after getting him calm and settled my husband showed me his message and said, “can I go up now?”  

The Tiny Girl Chronicles:  My daughter and I have worked hard on the Peggy O’Niel song and after singing it for Mimi this holiday I told her tonight we needed to record it to show Aunt Rebecca.   She has been working on playing the song on the keyboard and told me from her bed as I tucked her in and after singing the two-part song as a good night that she would show me in the morning. 

Still Making

There’s a phrase, “Everyone’s a Maker” that refers to the capability anyone could have to make things, all they would need is a 3D printer.   People who spend time 3D printing are “making” things and are therefore “Makers.”

Initially when we got the first 3D printer I was obsessed with keeping it occupied.  I would wake up in the middle of the night and go check on how the current print was doing and if it had completed, I’d start a new print.   On many nights, I’d stay up late because only forty-five minutes or other short amount of time remained for the currently printing job to finish.  If I went to bed, the majority of the night would pass with the printer idle. 

I’d wait the forty-five or so minutes, get the current job off the build plate, start the next job and then finish up any post-processing needed for the just-finished model.   All in all, most nights I was up far later than I should have been and then back up either in the middle of the night or early in the morning to start the cycle all over again. 

Things have changed since that time.  First, there are multiple printers.   Sometimes they’re all busy overnight but commonly I have them off until the morning.   Second, when I do send a job to print overnight, many times it’s ten to fourteen hours long.   There is no need to change jobs in the middle of the night. 

And third, I’m just more laid back about the printing now.   Printing was new and exciting.  I’m still just as enthusiastic about 3D printing, but I’m more relaxed about timeframes of getting things completed within.   The three FDM (or filament) printers I work with make getting things done far more quickly.   

And lastly, I trust the printers more now that I understand how they work better.   I have them tuned and I know how to send jobs to the printer.   That doesn’t mean things don’t fail.   Everyone has failed prints.   It just doesn’t happen as often.  

Tonight though as I was called upstairs for a farewell dinner with my in-laws before they leave for Florida for the winter, I kicked off a job on my most trusted printer.  I saw that it was printing so I left without a further thought.  I came back downstairs an hour-and-a-half later to find this blob.   The cube-shaped indentation is the extruder head imprint.   The job must have failed not thirty seconds after I left and then melted filament piled up on itself and all around the extruder until I came back.   It took a good while to clean out. 

The Big Boy Update:  My son had two much sitting still today (digital) and was a bouncing off the walls mess at dinner.   School is back in session tomorrow and the digital will go away. 

The Tiny Girl Chronicles:  My daughter had no idea how long my hair was.   There are so many things that we take for complete granted that are just known, because our eyes are always taking in our surroundings.   For my daughter, her world is a lot smaller in many ways.  

Do You Like Opium?

My daughter loves audiobooks.   She will be reading books more in the reasonable future when she can read fully contracted braille because her Mantis refreshable braille display has connectivity to the Library of Congress’s National Library Service for the Blind.   She already knows how to find and download books, they’re just frustrating to read because it’s partially unreadable to her right now. 

So audiobooks are her escape.   The books we get for her are all children’s books, but they each have different situations and stories and I don’t listen to the books in their entirety beforehand, trusting on the reviews and ratings available. 

So today, when my son was trying to listen to a YouTube video about Minecraft something or Zelda Breath of the Wild something else and I heard my daughter say to him, “hey Greyson, do you like opium?” I was a little concerned.   Had I not been paying attention to her audiobook content?   What did she know about opium and should I be concerned?

My son said he didn’t like it, which was a good thing to hear, and then I heard my daughter ask him more questions.   That’s when I relaxed.   She had asked him if he liked oatmeal, not opium.   She was reading to him from a cookbook they sent home from school she could have called, “Green Eggs and Ham” which includes fun and funny recipes for things in the world of Dr. Seuss that you can cook yourself.

This book in braille, which has zero pictures just like all braille books, my daughter is all about.   She read the entire recipe to my son who cared not one bit about it, but he listened in one ear while paying attention to his video in the other. 

The Big Boy Update:  My son makes puttering, clicking, sputtering noises when he’s playing a video game.   It’s the funniest thing because we’ll ask him to stop and he’ll realize he was doing it again, apologize, say he’ll work on it and not five seconds later he’s back at it.   Five seconds might even be a stretch because it happens as soon as he reengages with the game.  

The Tiny Girl Chronicles: My daughter fell asleep after dinner tonight.   A while later my husband asked if I’d go up with him so we could get her up, in pajamas, get her to brush her teeth and basically get ready to sleep instead of being crashed out on her bed with Alexa playing an audiobook in her clothes.  When we got there she was indeed quite asleep.   When she woke up she wanted to know what time it was and when we told her it was after nine she wanted to know if she’d missed Keira.   We reminded her Keira couldn’t play outside tomorrow.   She wanted to know why we wanted her to put on pajamas at nine in the morning (she can’t see so she couldn’t tell it was dark outside) and we told her it was still nighttime.   She finally got it all and was awake enough to brush her teeth.   Then she fell immediately back to sleep on her huge stuffed animal her brother got her for Christmas, sprawled out across it.  

The Most Reasonable Fit

My son did not have a good day at school today.   He was doing okay with the school part through most of the morning and then I reminded him of a reading obligation he had that he didn’t want to do last night so he put it off to today.  He wasn’t happy about more things being added to his long day before the weekend started as he was very much looking forward to a video game “hack” his father had been working on for him. 

My son likes hacks.   In this case, it wasn’t a bad hack, by hack my son means doing something the game designers didn’t expect you to do with their software or finding a loophole where you can do something you shouldn’t normally be able to do.   His father was getting things ready for this evening and the work was only piling up on my son’s side. 

He had to write a thank you note for some Christmas presents and read as part of his obligations at home before gaming was to commence.   He was going to have time for that because he was ahead of work at school until he got on his one on one call with the assistant teacher and realized he’d missed two things he should have gotten done earlier in the day or week and that tipped him over the edge.   

My son was in no way trying to get out of doing the work at school, it was an honest oversight, but it meant he had less time to get the reading and thank you note done than he thought—plus he had those two extra assignments he’d missed. 

It was lunchtime and my son was upset.   We tried to get him to eat, but he just couldn’t calm down.   The biggest thing that had upset him of all was—and get this—writing an address on a letter he’d written to a teacher who was leaving the school.

An address on an envelope and my son was losing it.   He said, “you know that freaks me out more than anything else.  Please don’t make me do it!”   I had missed the backstory to this as my husband has done some of the work with my son lately.   His class is the oldest class in the school and they write a lot of letters.   Apparently my son has a thing about writing on an envelope.  

We said he could do it after lunch.   He flailed about and then jumped around on the couches.  He grabbed and pulled down his hair, he threw himself on the ottoman.   Then he stood up and defiantly said, “this is the most reasonable fit I’ve had yet.”

My husband and I laughed at him and he got quite angry at us.   We had to explain that it was what he said that we were laughing at and we thought it was a very clever thing to say.  His father said, “that’s blog-worthy for sure” and my son got more frustrated that we were laughing at him.   We calmed him down and helped him understand we were impressed with the saying, not thinking he was silly. 

Now, hours later, it’s after eleven and my son has just gone up to bed.  Before he left I asked again what his issue was with the envelope labeling.   It turns out he’s worried about the need to be precise in his writing so that the letter will make it to its intended recipient.   My son knows cursive much better than print as that’s what Montessori schools teach, so having to write clearly in print is more stressful than cursive.   

The Big Boy Update:  Isn’t it interesting that as soon as the things a child doesn’t want to do aren’t an issue and they can do a preferred activity they’re happy, not tired and have plenty of energy.   Their entire demeanor changes.   Today, when we made an agreement with my son to divide up the reading over two days, letting him pick the times he wanted to complete the reading in so that he could play the video game he was so excited about after school, he was fine.  Totally fine.  

The Tiny Girl Chronicles:  I got a long time ago some material that I sewed over onto itself to make a blanket for several dogs ago.   It was the most fluffy, soft material at the time but today feels positively rough in comparison to some of the newer blankets.   There is a big hole in this blanket, making it sort of a sack.  My daughter likes to get in the sack and move all around the house in it, sweeping crumbs and dirt up along the way my brain screams out to me in protest.   Thank goodness we have Kevo, our Roomba, to sweep the floors every day so that my daughter can continue being a sack child during the colder months of the year.