Phillippe

We got some news today about one of my son's teachers.   He has been learning Spanish since he was four-years-old.   We Ms. Carina as did my son and when she decided to stop teaching to spend more time with her young children, we were sad.   That is until Mr. Phillipe replaced her.  He was a single man on a campus of all women administrators, staff, and teachers but he fit right in and never seemed to mind.  He was always happy and my son liked him immediately. 

The next year when Mr. Phillipe offered Chess Club after school, my son joined that and while he wasn't ever that good at chess, he liked being in the class.   Last school year, Mr. Phillippe hadn't been feeling well for some time and around Christmas, he discovered he had lung cancer and had to take time off to pursue treatment. 

The children were sad and concerned.  They wrote him letters and sent well-wishes.   In his absence, Ms. Carina came back to help and has stayed on with the school.  Today, we received a message that Phillippe had died last night.

My husband and I decided to tell my son tonight when the time was right.   I wasn't sure when that would be or how he would react.   The time seemed to present itself when he and I were folding laundry together.   When I told him he put his head under the clothes and said, "nooo...".  Then he sat up and talked to me about him.   

We talked about chess club and all the things he taught my son.   I said every time he played chess he could remember Mr. Phillipe.   My son got an idea, saying he could remember every time he did (and here is where he couldn't remember the name of the move) in chess, he would remember Mr. Phillipe.   I told him that would be a lovely way to honor his memory.  

Then my son looked at me and said, "he was too good to die."   I'll miss him too, I said. 

The Big Boy Update:  My son has, by choice, spent time playing with his sister today instead of wanting to be on the computer.  They have some new made up games they're playing together that doesn't require my daughter to need to see.   I don't think he thinks of the games in that way and they're no less fun.   

The Tiny Girl Chronicles:  My daughter has either been dysregulated because something is bothering her a lot these past few days or she is going a bit mad from all the COVID-19 indoors and alone.   The weather has been rotten and her friends can't come inside and haven't been around even so.   She did some LEGO work with her father today but she was almost mean to him the whole time but not in any way that made sense.   Maybe Dhruti will help her when she sees her this week. 

It Was a Dark and Stormy Night...

 ...in my mind.   I was so frustrated yesterday at one of my printers that I stormed off to bed without writing a post, so this is tomorrow with me back-dating this post.   I had an issue I thought I'd fixed that only caused another issue involving hot, melted filament to ooze out of the printer while it was running.   Not something you want to happen. 

I went to bed worried because I had no idea how to fix the problem.  Then, I watched some videos and the fix, now that I'd completely rebuilt the extruder, including getting thermal paste all over my hands (it's not fun stuff and it smells bad) and the final adjustment part I was missing is a simple, single screw fix.  

I was doubly concerned because this printer, the Prusa Mini+ is the one I'm taking to my son's class on Friday when I present to them about 3D printing and I need the printer to work reliably.   When I got up, I got into a conversation with another maker, and the issue I'd been having he had also coincidentally experienced, including the same fix.   His printer has been working flawlessly since he made the change.  

What a relief.   I hope I have the same results.   We'll know in a day or two. 

The Big Boy Tiny Girl No Screens Potato:  My son lost screens yesterday.  This forced him to do offline things and while at first, he was angry, he had a great day playing with his sister.   That blanket that is effectively a pouch with a hole in one corner now has every pillow and blanket the two of them could find stuffed into it.   It's too heavy to drag alone, but they're loving their, "potato."  They laughed, yelled, and romped around the house yesterday, dragging the potato (and who knows how much dirt) behind them.  

Mods Teeth and Hair

My husband and I are making some modifications to the mechanical room, that was then the pinball and workshop room and is now generally referred to as the print room.   The modifications are mostly a new rack we're adding in place of a table, but there has been a lot of things that had to happen to get everything finished.   It's still not finished.  It's a good thing tomorrow is Saturday.  My back is sore.

The Big Boy Update:  I don't know how to cut hair.   The only hair I've cut is my son's during COVID-19. My husband had me help with his one time, but he knew what to do.  My son's I just sort of winged, basing what I did on how I'd seen people cut hair in salons.  Now, my son only wants me to cut his hair.  He was in a hurry last night and I wasn't sure if I'd done a truly bad job or a sort of bad job.   This morning after a shower and sleeping on it, it looks like it always does when he's gotten it cut.  Well, not that professional, but not bad either.   Fortunately for me, he has wavy hair that hides my lack of skill. 

The Tiny Girl Chronicles:  My daughter fell on the coffee table yesterday and her bottom tooth went entirely through her lip.   All the way kind of ouch.   We asked our next-door-neighbor, who is our dentist, to check on her and he confirmed our suspicions.   The tooth hadn't moved and wasn't wiggling.   The tissue was a fairly clean cut.   She was uncomfortable for a bit but amazingly is eating and doing everything she normally does.  It could have been worse.  I'm very glad it wasn't.

Rebuilt

Tonight is going to be short and short.   I don't know about sweet.  I rebuilt two extruders on two printers today, which was a good exercise as they require periodic maintenance and I learned some things about one of my newer printers.  But I'm tired and I want to go to bed.   That's it.   That's all I've got.

The Potato Update:  We have a massive potato in our house.  There is a blanket that's stitched up all around except for a small opening a child can fit into.   My children stuffed every blanket they could find into it today, a partial snow day here, even though there was very little snow.  It is heavy and hard to move.  But they're thrilled to roll it around.  As long as it's out of the walkways, that's okay with me. 

The 911 Near Miss

Two nights ago I got two hours of sleep.  It was just one of those nights.   There were reasons and none of them were good ones.   I wasn't binging on The Mandalorian season 2, although if I don't watch it soon, my husband may tie me to a chair and make me.   It was a long night and sleep wasn't had and as a result, I was tired.  

I got to the Chiropractor's office because I had all ideas he would be able to help me sleep better the following night but before I went in, I pulled out my iPad in the parking lot to respond to something.   I spent a few minutes working on the email and the next thing I knew, someone was tapping on my window.  

"Huh?" was probably what I said.  I recognized one of the front desk staff.   I waved to her and said, I fell asleep, thanks.  I was getting ready to come in, putting my iPad back in my purse and rolling down the window for the dog, who was sitting beside me, when I saw the doctor himself at my window.  

This was not right.   I didn't see him in the parking lot—had never seen him in the parking lot—and I was in my groggy state still a little confused.  He asked me if I was okay and I reiterated that I'd dozed off.  He went back inside and I followed shortly behind him.  

I saw him a while later when it was my turn to be seen.   He told me there was a lady who came in and said I was slumped over in the car.   She thought I might be dead and was going to call 911.  She was only stopped from calling 911 if the doctor came out to make sure I was okay.

I am baffled by the concept that you'd call 911 before tapping on the window or calling out to someone if you were concerned about them.  She could have used a stick if she thought I was COVID-19 infected to the point that I was on death's door and getting near the car was dangerous to her health.  Or yelled.

The front desk person came out and knocked and I was alive.  Why did the doctor, who was six people behind, have to come out to check so she wouldn't call?   People fall asleep in their cars.  It's not unheard of.   I could have been with someone who went into the office and I was waiting for them and was napping while I waited.  I was nodded over, looking at my iPad, I wasn't sprawled out all over the steering wheel.   

And lastly, if I was dead, why would you call 911? 

The good news is I wasn't dead.  And I got a much better night of sleep last night.  Thanks to my chiropractor for always taking care of me and making sure I'm not dead. 

The Big Boy Update:  My son was folding the laundry the other day and I was going to come to give him a hug.  At the time he was working on folding his socks.  He hefted the socks in an outstretched arm and said, "I have a pair of socks and I'm not afraid of using them!"   I held my hands up in a surrendering gesture and backed away laughing.

The Tiny Girl Chronicles:  My daughter asked me, "are all dogs incredulous?"  I said I wasn't sure what she meant with that sentence and could she tell me more.   She replied, "you don't know what that means? It's the most important word."

When Motivation Strikes

Yesterday morning my daughter was antagonizing her brother.  Her brother was being mean. Things escalated until I heard him calling my daughter stupid repeatedly.   I called the two of them in and levied consequences.  For him, there would be no screens during his allotted screen time.  For my daughter, there would be no LEGO making with her father that evening.   They were mad.  That was good. 

When I picked up my son from school he asked if there was anything he could do to earn screens back.   I said I didn't know that there was.   He offered if he and his sister came up with a plan on how they would use negotiation instead of name-calling and violence, would I reconsider?

This was initiative on his part and could end up making a change in how he and his sister interacted.  I said pending his father's agreement, if the two of them worked it out thoroughly, I would reconsider.  Not promise, reconsider.   So it had better be good. 

He came in and ran upstairs to start writing.   My daughter wanted nothing to do with is so I told her he might make all the decisions in that case.   She followed him up.  In a half-hour, he came downstairs with a full-page written out.   This is the child that hates writing thank you notes and barely gets anything written without us sending him back again.  

Here's what the two of them came up with.   We have been referring to it ever since.

The Big Boy Update:  My son was folding laundry this afternoon.  I offered to show him a trick on how to fold the shirts.   He said, "I know mom, an old boyfriend from college taught you how to do that.  You've already told us all your tricks.   You're gonna need to get new tricks."

The Tiny Girl Chronicles:  My daughter had an appointment with Dhruti today right in the middle of her morning EL class.   I put her in the car with her Chromebook on her lap and got her connected to the class meet.   She was able to be in school and in the car at the same time.  Technology.  

Vivid Dreams

I need to do some updates on what's happening with my daughter, or perhaps what I mean is things she's said and done.   Her life is interesting in different ways than other people who can see the world around them. I'll break it into parts as they happened at different times.  

The Stairs Are Where I'm Free

My daughter would love to run more than anything other than being able to see, I'd venture to guess.  Everything is a hazard to her.  By way of an example, my son was sweeping up crumbs from the pile of saltine crackers he'd eaten earlier in the day at the bar seats by the kitchen sink where the children eat their meals.   In order to get all the crumbs, he moved the two seats away from their home location where they're pushed up against the bar.   My daughter came downstairs at a fairly speedy clip and full-body slammed into the solid wooden chair.  She was hurt, she was upset, and she blamed my son.  

We try to keep the whole house safe, but it's not possible all the time.  Today, my daughter and I were in the basement when it was time to go to the second floor for her next online class.   (Today was the first day back to school for her which will be online until the middle of next month at least.)  On the way up the stairs she ran ahead of me, calling back, "the stairs are where I'm free!"   I hadn't thought about it but she's right in that.  There are never unexpected things to run into on stairs.   I'm glad she has at least one place she can feel safe.  

The Sound of Rain

I hadn't realized it had begun raining one-day last week.   My daughter told me about the rain and I asked if she was sure it was raining?   She told me it hadn't been raining long at all, less than twenty minutes.   Then she said, "I can tell how long it's been raining by how the cars sound."  I asked her what she meant.  She said it was how the wheels sounded on the road with the water that had already landed.

Always Asking

My daughter told me in frustration one day, "Do you know what annoying about being blind?  Everyone can always see the words or the thing or anything else before I do.   Because I have to always ask.  I always have to ask."  

Seeing Dreams

This one was the most surprising of all the things I have to write about tonight.   It seems like much of what I write regarding my daughter has an undertone of sadness to it.   She can't run freely, she has to ask what everything is, having to grieve the loss of her vision, hurting herself again and again, etc.   This one I don't know if I'd call happy or hopeful, but my daughter has dreams where she can see.  She was having her periodic appointment with her psychiatrist and she mentioned this to him.   It's not all good though.  She described being in a field in one dream and having a good time with friends,   But then a monster came and chased her.   "She said sadly, they always end badly."  Her doctor told me it was a possibility it was a side effect of the medication she was taking, so perhaps when she stops that in the future, she'll be able to have happy dreams in which she can see.

The Big Boy Update:  It's Not Your Fault.   I have a conversation with my son from time to time about his responsibility when it comes to my daughter.  For the bar chair incident, I told him it wasn't his fault that his sister ran into the chair, even though she blamed him quite loudly.   I told him he had more responsibility than he would if his sister could see, however.   He's seen her regularly run into things and get hurt.  It happens so often he probably doesn't even think much of it and considers it a normal thing.   What I told him was that we had a responsibility to keep her safe, so she could move in the house and not constantly hurt herself.  That includes not leaving toys in the middle of the floor, picking up shoes, and always putting furniture, drawers, etc. back to their home location.  It's a big responsibility and I told him how proud I was that he always thought of his sister and tried to keep her safe.  He does a good job and he does care about his sister.   It's never his fault, but it does feel like it sometimes.  

For Better Health

We don't eat horribly, but we don't eat that well either as a family.   We should eat more fruit and have less sugar-based and refined sugar products in our pantry.   We should avoid artificial sweeteners and caffeine and we should make our own food from ingredients instead of boxes, bottles, and jars.   We should drink water instead of sodas and juice.   And we should eat a well-balanced meal.   We could also reduce carbon emissions more than we're doing with the electric cars and solar combined if only we'd remove beef from our diets.  

That's a lot of shoulds.  Some of those things we don't do, like drinking artificial sweeteners.   The children almost always drink water with the rare exception of having a soda at a restaurant.  Or now, with the rare exception to be allowed to have one of the few sodas in the house.  We don't eat out much at this point, but we weren't eating out that much in general before COVID-19.   

We need to increased the fruit we consume and reduce the sugars.   That one is probably our biggest challenge.   My husband cooks most dinners and he's good at cooking healthful meals.   The trouble is, we tend to do processed foods for breakfast and soups and noodles pre-packaged for lunch a lot.   Some of those choices aren't that bad, but some of them aren't ideal. 

My husband has taken a step and the rest of us are following, which we do by default since he's our, "cooker" as my children used to call him.   I'd like to instill good eating habits in my children, but to do so, I need to have them myself first. 

The Big Boy Tiny Girl Housework Update:  You wouldn't think an hour-and-a-half of housework would be such torture to a child.   My children weren't in the mood to help clean the house so I got a lot of excuses today.  None of them worked.  Not only that, when they persisted in complaining, I added time to the duration we'd be cleaning.   That didn't go over well.  I taught them how to do different cleaning tasks they've never really done because we've had someone clean the house since they were babies.   Currently, we're on our own.   At the end of the time, after running back and forth, coming to their calls for help or when they asked what to do next, my daughter was cranky and hungry and said, "you didn't even clean anything.  That's totally not fair."

Skipper Zip’s Chops & Chips

I mentioned a while back I think that my daughter's VI teacher sent home a Green Eggs & Ham cookbook that features recipes children can make that loosely tie to one of the Dr. Seuss stories.  My daughter isn't into reading braille as much as she should be, which I think will change when she can read fully contracted braille.   

Speaking of, and as an aside, I'm only four lessons away from completing my contracted braille class.   I could have finished it long ago, but without using the braille it's hard to remember it and so I've held off on completing lessons until my daughter was at or near the same level.   She and I are both about to complete now and I'm sure my teacher would like what is probably her longest-standing student to complete the course and move on.  

This is particularly true since Hadley moved to an online self-paced version of the class after I started.  It didn't make sense for me to start from the beginning of that course so my instructor and I decided I should continue with the version I'd initially enrolled in. 

Back to dinner with Dr. Seuss.   My daughter and husband picked out a recipe titled Skipper Zip's Chops and Chips.   It's from, or rather related to the book, "Oh Say Can You Say" and involves pork chops and chips, which in our case were thin potato wedges.  

We had green beans, squash, and zucchini to round out the vegetable side of the meal.   My daughter helped her father cook it all, reading him the instructions and ingredients as they went along.   This kind of help is important to my daughter.  She has a purpose.  She is helping.  She is doing something that's all her own.   It really makes her day. 

Dinner was delicious.   She had a sense of pride in her voice when I told her thank you for dinner when she replied, "you're welcome."

The Big Boy Update:  My son is required to wear headphones when we're around and he's listening to videos.  Only sometimes we need to hear what he's listening to make sure it's appropriate.   Fortunately, he doesn't like wearing his headphones all that much so we've been able to let him know what's not okay to watch.   Mostly it's bad language, which I use, so he's heard it, but it's how the words are being said and other phrases that might sound cool to him but are absolutely not okay for him to repeat to a friend or anyone else.  He's fairly understanding about it and changes the channel.   He's not sneakily looking for content, he just wants to listen to someone talking about Minecraft.   Sometimes though, those people are more appropriate for an older audience.  

The Tiny Girl Chronicles:  My daughter had her old friends from down the street come to the door today and ask if they could play together outside.  She asked if it would be okay to do so wearing a mask, and we said okay.   I saw them standing around and I asked later if everything was okay.   She said they were practicing the bullying game.  Children these days are taught how to handle bullying, not that it always is successful on either the being bullied or being the bully side, but it's definitely more than I got when I was in school.   She wasn't bothered, alarmed, or even concerned about the game.  It was something they were just doing.   She told me, "Claire asked me to bully her," when I asked what they'd been doing.   That sounded odd, but when she explained it it made sense. 

92

My daughter is bored.   She is bored and she wants to be entertained.   As parents of a blind child, it is very hard sometimes to know where to draw a line   We want our child to understand that people don't just drop everything to play with her anytime and every time she wants.  And believe you me, she wants that all the time.   But we also want to spend time with the children, doing meaningful activities that will make memories or provide an educational opportunity, or that serve a purpose like contributing to household chores.  Figuring out where that line is with my daughter has been very challenging. 

With COVID-19, she's home for much of the time she'd be on campus in school.   She has only one or two friends she can play with in relative safety outdoors or in the garage with the door open if it's raining.  Online play dates don't interest her in the slightest.   Today, there was a welcome back Google meet with her class and she didn't want to attend, fighting the mandate that she would in fact be on the call and would have her hair brushed for it.  

During that very same time when she would shortly be hearing her classmates, talking to them and catching up on what people did over the break, she was complaining to her father that he hadn't done anything with her, "in a long time" and that he played with my son online in Minecraft.   This wasn't true at all.  Her father had spent hours and hours with her putting together some LEGO sets.   He had taken her to my parent's mountain home for the night and then a day of skiing the following.  He, in contrast, is worried about the time he hasn't been able to spend with my son, having only played a single game with him for a half-hour one night.   But to my daughter, it's not the same.   

There has to be more underlying her need for attention.  When she got home from picking her brother up from school this afternoon she picked one of the biggest fights with him I've ever seen—because she wanted to sit in his chair (presumably so he couldn't play Minecraft.). I lost my temper with her and finally got her to admit the reason for her acting out so much recently was that she was bored. 

We already knew this.   It's what to do about it that's the problem.  I had a long chat with her after I'd cooled down, saying she wasn't alone in this feeling of boredom and that we were all doing our best with COVID-19 changes.   I told her also that she was not going to get all of our attention and that she needed to come up with things to do herself.   We talked about things she could do, many of whom she'd forgotten.   She had bitterly told me in the conversation that all of the things in the house were "seeing" things and she needed help.   

Still, it's hard to come up with things that will occupy her alone, that are fun and that don't need our help.   My husband came up with one tonight that, upon hearing her answer, neither of us believed.  How many chairs do we have in the house?   "Did stools count?" she asked.  We said they did.  What about small children's chairs they say in when they were younger that were now in storage?  Yes, those counted.  Outdoor furniture and camping chairs?  Sure, we said.  If you can sit in it or on it, count it. 

She came back with an answer in a short while and neither my husband nor I believed her answer.   We mentally walked around the house with her and finally agreed, she was correct.   We have an unbelievable ninety-two "things to sit on" in our house.  

Now, she's off counting cabinet doors.   I don't know how long we can keep her occupied with quests like these, but we'll keep trying to do that or come up with other things she can do that are fun.

The Big Boy Update:  My son is currently in Minecraft, waiting for an invitation from his classmate and neighbor to see if they can get into the same world together that Nicholas plays in with his cousins.   My son is pretty excited about playing with some friends instead of all alone. 

The TIny Girl Chronicles:  I had been trying to get an hour alone to get this blog post and some other correspondence work done and had said I was putting my earbuds in and would absolutely not be available unless it was an emergency.  No "Mommy's" would be answered.   It wasn't forty-five seconds later that my daughter was crying out my name and saying, "help!"   I looked and she was sprawled on the floor at the bottom of the steps to the basement, just like she'd been when I said I was starting my hour.   Only she'd fallen down the steps and hit her ribs on the railing.   It was only half-way down, but she was scared.   I got her an ice pack and gave her the one thing she said she wanted: a kiss.   She's okay now.  

Longest Print Yet

I remember when I first started 3D printing how I'd look for models that could be printed quickly.   Today, I finished the longest print I've ever sent to a 3D printer.   I almost lost it at thirty-three hours in when I happened to be in the room.  I heard a plastic thunk sound and turned around to see part of the model dislodged internally, surrounded by some other sections of the model. 

This is the crazy part: I taped the dislodged parts to other sections of the model and told the printer to continue—and it worked.   Here's the model, all forty-four hours of it.  It's a special Cog Dice Roller model from Clockspring, the same creator who designed the other fun models for rolling dice I've talked about here before.   

My daughter loved the model.   I think I may have to print one for her teachers at school she's had so much fun with it. 

The Big Boy Update:  My son had a field trip today.   It was at a park and outside.   Parents had to drive their children to the location and pick them up individually.   Measures were taken just like they would have been at school for safety.   He learned about tree rings and how fires are good and bad things for trees.   And also that our neighbor's son, who's in his class, has a Minecraft server he plays on with his cousin.  They're making plans to play together. 

The Tiny Girl Chronicles:  My daughter made our entire grocery list.   It was three pages in braille.   Today, she helped me get the entire list at the store.   We shopped for a long time with her helping me get all the things we needed, plus a few fun things we most definitely didn't, calorie-wise.   She even helped me put the groceries away when we got home.

The Mini

I forgot to write a blog post yesterday.   Totally slipped my mind.   I'd gone through a confusing process the day before when I checked to see if a package was out for delivery, only to find FedEx had tried to deliver it at 7:17am and they would try one final time the next day.   We were confused.  They hadn't tried to deliver it as no FexEx truck had even been on our street since 5am.  (My husband reviewed all the footage from the camera we have pointing at the street.)

I called FedEx and the nice man who helped me said that the message I'd gotten via email was confusing and that the package hadn't been even out for delivery.   There was an issue with it being "released" and as a result, it had been pulled from the day's delivery schedule.   He said either I could go pick it up (which is what the email had also told me) or I could wait to get it the following day—if it had been released by then. 

I asked how it was that I could pick it up if it hadn't been released and was he sure?  He was.   I just needed to show my photo ID at the pickup address and I could get it.   I wanted that package, so I went right before getting my son for school.   When I arrived I was surprised to see only one other car in the parking lot.   That FedEx location was always packed every time I'd gone before. 

I went inside, gave them the number and then I found out what "released" meant.   The package hadn't cleared customs.   Customs, the lady told me, was running days behind schedule and there wasn't much they could do until they released it.   That made sense to me and it also made sense that I couldn't just pick the package up with my photo ID until that happened.   

We had a nice time chatting while she was waiting to hear back on the package and then another customer came in and we all got to chatting until I realized I'd better head out or I'd be late to get my son.   She assured me as soon as the package was released, it would be on the way to me.   I thanked them for the help and told the other clerk thanks for the suggestion for a VR game my daughter might like since he'd heard my story of how she could play VR Minecraft (he played VR games himself.)  

Yesterday the package must have cleared customs because it was on my doorstep when I came up mid-afternoon.   I'd been waiting since mid-November for this.  If you've guessed the package was another 3D printer, you get an A+ for the day.   I'd ordered a Prusa Mini.  It's heavily back-ordered and the wait has only increased since I ordered mine. 

So last night I was distracted with the new printer and totally forgot about this post.  I'll write two posts today to catch up I think.

The Big Boy Update:  I told my son if he would give me some time to work on putting the new printer together after school, I'd let him play Minecraft.   Unless his friend, Rayan, rang the doorbell.   He agreed and he held to his word, playing outside for a good while and then taking care of himself while I worked on the printer build. 

The Tiny Girl Chronicles:  My daughter went skiing with her father for a day trip and I was worried she wouldn't like it.  I know my husband and he can make things fun though.   She did have a good time, but I think it's not her favorite sport yet.   She learned a lot even in the few short hours they skiied.   Next time she may decide she loves skiing. 

Return to Normal

Normal posting here, that is.   I always write something about each of the children, or something they did together and for the last five days I focused on the history of my daughter's eyes, writing something I plan to refer to in years to come.   It seemed like they should stand alone so odd as it was after nine years of posting every day about my children, I took a five-day break. 

Over those five days my son has been going to school, my daughter has been still out of school and we tried to get our lives, or rather house, back in order.  To be fair, our house isn't ever really that far out of order, but it felt so to my husband and me and if we didn't get on top of it soon, I was going to fall into a deep pit of untidy despair—and my husband didn't want that.  

We talked to the children and asked when they'd like to do the tidying and cleaning up over the three-day weekend.   My son groaned, complained and did the ten-year-old tantrum he does for about twenty seconds until he realized it wasn't going to help.   He huffed off and I yelled at his retreating body that should he leave, his sister would be picking all the times we'd be working.   He didn't care apparently because he didn't return. 

My daughter picked three intervals of time on Sunday and we set alarms on Alexa to make sure we didn't let the time slip by.   On Sunday morning she woke us up, saying she'd already been working on the bonus room and could she do some dusting?  She likes dusting a lot but she needs to be told where she can dust lest she knocks things off from surfaces covered with who knows what. 

We did a fairly good job of getting things cleaned, including both children's rooms, which we'd been letting go for a good while.  They took a break while my husband and I continued and we re-convened later to finish the day's work, followed by a bath and a shower for my daughter and son respectively. 

On Monday we had intended to do actual house cleaning, including vacuuming, sweeping, bathroom and toilet cleaning, and the coveted dusting job both children liked to do together.   Laundry had been finished the day before so we were in good shape.   

My husband and I were the ones who got lazy and decided to do only some of the work, letting everyone have most of the day off since my children's neighbor friends had some availability to play outside and the weather was reasonably warm.  

The holidays as well as the house mold cleaning situation made me feel as though I was never going to catch up.  As it stands, I think I can see the end of the backlog.   That being said, my husband and I have just gotten off the phone and realized there are some things we really need to start work on project-wise that we've put of for far too long.   

I suppose being busy is better than being bored.   My daughter said she would help us.   Now if I can just figure out a way for her to help us that will be meaningful to her.

The Tiny Girl Chronicles:  My husband and daughter have spent the better part of two weeks putting together two complex LEGO sets.   We now have on the dining room table a functional roller coaster and Ferris wheel.  My daughter understands so much more about how LEGOs work from these projects.   She enjoyed every single step with her father.   Their next project is going to be a carousel.   Hopefully, there will still be room for us to eat at the table.  

The Big Boy Update:  My son went to bed a little too eagerly tonight.   I asked if he had any digital in his room and of course, he said no.   I went downstairs to our room and saw his iPad missing from the charging spot I'd put it only an hour before.   I wouldn't have been tipped off so quickly had I not heard him jump out of bed and open and shut a drawer right after I left the room.   I suppose it's good he's not that sneaky yet.  

It Started With a Cat: Part V

I can remember what happened to my daughter's eyes clearly.   This story, these posts, I didn't refer to anything, I just knew what had happened because we'd lived it.  What happened next was a slow, frustrating process of degradation in my daughter's vision that, had we caught it earlier, like so many things, might have ended up being less severe.   

It's easy to say that in hindsight though.   What if we'd known she had an eye infection?  What if we'd gotten to Dr. Trese earlier?  What if we elected to NOT do some of the vision-saving surgeries because that would have been the better path for her eyes in the long run?  So many ifs.  In this case, this last piece in the story of the slow decline of my daughter's vision into darkness, we're back to pressure. 

Many times we'd had to have Healon put into my daughter's eyes to maintain their pressure.  Sometimes, we'd call and schedule an early appointment because her vision would decline and we knew it was because her pressure had dropped and the inner structures of her eye weren't well-supported. 

At a certain point either because the drainage process in my daughter's eyes was slowed by the sheer amount of debris in them from everything that had happened both naturally and surgically.  This was good.  Her pressure was back to and was maintaining normal levels.   It was a frustration, and one I will admit still makes me angry to this day.   If the ciliary bodies were damaged in that initial infection such that they couldn't produce fluid, which caused her pressure to drop to zero, which caused her retinas to collapse inwards, then why, I ask you why, would the only thing to successfully heal be those very same ciliary bodies?

Dr. Trese said at the outset he thought the damage was so great they would never recover.   Not only did they recover, but we also ran into the opposite problem I alluded to earlier.  My daughter's eye pressure shot up.   It was far too high.   I mentioned high pressure could be controlled with drops to reduce the amount of fluid produced by the eye.   

First, she was on one drop per day.   Then it went to two drops.   Then she had a second eye drop added.   Then, and this is an interesting one, she was put on altitude sickness medication which has a side effect of reducing pressure.  The dosage of that was increased three times.  This went on for a long time until we were connected with a glaucoma specialist at Duke.   

Dr. Freedman said everything we were doing wasn't going to matter because my daughter had run away pressure and it was permanently damaging her optic nerve the longer it went on.   Dr. Freedman said the problem was the only fluids that were escaping my daughter's left and still marginally functional eye was what evaporated off the surface.  This was likely because her eye had so much debris in it from damage, infection, surgeries, etc.  

There was a way to help, but it would be significant.  And Dr. Freedman wanted my daughter to be part of the decision.   It wouldn't' be comfortable for a while, and she didn't have to do it if she didn't want to.   If she didn't have the surgery to put a drainage device on the outside of her eye, behind the lid, she would slowly go completely blind.  Some children took that option.  

My daughter, when I told her about the choice as she was sitting on the branch of the tree in our front yard asked, "so if I don't have the surgery then I won't be able to see the leaves anymore?"  I told her eventually, no.   She did want the surgery.  

I was quite scared about this surgery from a recovery standpoint.   The cataract removal was awful on her. She wouldn't open her eye for five days.   That surgery, I found out later, had a stitch right in front of the eye that hurt a lot until it dissolved.   The drainage shunt surgery turned out to be a breeze.   My daughter was and has never been bothered by it.  

Unfortunately, Dr. Freedman told us there was significant damage to her optic nerve from the sustained high pressure.   Because the optic nerve is a part of the spinal cord, it's not something that regenerates or recovers.   We did stop more damage from happening, and that, at least, is a good thing. 

That brings us up to now for the most part.  We still have two drops in one eye per day and we check her ocular pressure regularly at home to make sure the shunt is working correctly.  My daughter sees very little, sometimes it seems like she sees nothing.   But that's not completely true.  She runs into things all the time.  And when I say all the time, I mean ten, twenty times per day?  Maybe more.   Most are brushes with things but some hurt.  She's never without bruises.  She won't slow down for anything though. 

So instead of leaving this story that started with a cat on a couch my daughter couldn't see on a down note, I'll end with something that happened yesterday.

My son is an avid player of Minecraft.  My daughter would dearly love to play, only you have to see to be able to do anything in the game, even if the graphics are intentionally minimalistic.   My husband had a thought.  He put his Virtual Reality headset on my daughter and brought up VR Minecraft.   He handed her the two hand controllers and put her in his spinning office chair.  I came downstairs to my daughter excitedly telling me, "Mom, I'm digging in the sand.  Look, do you see the water?"  I watched her dig, drop pigs in a hole, fly up in the sky, find her way back to where she'd been digging, navigate the controls with her hands.   She could see.  I don't know how she could, but something about how the game was showing itself to her on the headset let her see more than I thought she'd been able to see for a long while. 

It's not a solution, but it's something she can see and in a world where she can see so little, I'll take it.  

In conclusion:

There is so much that's happened in the last six years that it's hard to sum up in only a few pages.  I focused on the medical here and not the social and emotional health of my daughter, as well as how her father and I personally dealt with everything that happened.  And also her brother, who was also affected by events as they played out.   That, perhaps, will be a story for another day. 

It Started With a Cat: Part IV

For a long time, my daughter had three separate substances in her right eye.  One was to maintain normal pressure, one was to replace the vitreous Dr. Trese removed when he performed his initial surgery on December 19th, 2015 (a day that sticks in my mind to this day,) and a third, heavy substance that would act like a small ball of liquid metal in her eye, weighing down the retina in the hopes of flattening it back down.  To have this happen, my daughter had to lie on her back for most of the day as well as night.  

My daughter followed all the instructions given to her, including tolerating drops in her eyes upwards of twelve times per day.  Dealing with drops wasn't fun for her.   We've had so many drops over the years we started calling them by the colors of the caps.   She became so good at the drops after a while she'd just lean back, hold her eye open and wait for them to fall.   This never failed to impress the hospital staff, but to my daughter, the faster she got drops in, the more quickly she could get back to what she was doing. 

The initial surgery and routine did lay her retina down to some degree, but additional vision didn't return to her eye.  It's hard to tell what's wrong sometimes.   Dr. Trese by now had thought the initial insult to my daughter's eyes with the infection, retinal detachment, and prolonged oxygenation issues had damaged the rods and cones to such an extent that they were non-functional.   He had many patients who'd regained some vision over time and that was always possible, but for now, her right eye wasn't seeing. 

We focused our attention on her left eye, returning often for EUAs in which Dr. Trese frequently would add Healon to get her pressure back to normal.   We wondered if she'd have to have Healon added every few months for the rest of her life to maintain pressure because while her eyes weren't producing fluid, they were draining fluid away.   

One thing that happened that Dr. Trese addressed surgically multiple times until it was clear it wasn't worth trying anymore was the removal of scar tissue in the interior of my daughter's right eye.  She couldn't see out of it, but she also had significant scaring inside the eye that over time was like large swiss cheese that turned to small swiss cheese in that it blocked all but a few openings of light.  Over time those little swiss cheese holes closed up entirely.   Dr. Trese said children have a high scaring response so he had to be careful what he did.  In removing the scaring, he was likely to cause more scaring to happen. 

Today, my daughter's right eye isn't something we see often.  She wears glasses all the time, but when you do get a glimpse of her eye, it looks strangely abnormal.  It's as if the white part of her eye is swallowing up the iris.  Whatever tragedy happened inside her eye at the start and the subsequent things we tried to do to save her vision weren't enough to beat the malformations in conjunction with the damage done.  She still has two of the three substances in her eyes, they don't bother anything and can continue to live there indefinitely. 

While we tried to save what was left of my daughter's left eye and remaining vision, she had additional things happen.  First, and most alarmingly, she suddenly went completely blind.  Today, she knows how to navigate a world blind, back then, she didn't.  It was a frightening time because everything in our house seemed to be at eye-height.  Counters, drawers, tables, chairs.  We scheduled a quick trip to Detroit to find out she had a hematoma inside her eye from what was likely a hit to the head or eye. 

To this day, we don't know what caused it, but it could have been anything.  The force it would take to cause such damage to a normal eye would be significant.  With my daughter, it could be something fairly minor.  In order to resolve the hematoma we had to do...you guessed it...more drops.  It resolved, but sadly afterward she lost much of her color perception because she had gotten some blood behind the retina which caused her to be unable to perceive colors as well after that.  

After the hematoma had resolved, we tapered her steroid drops and because nothing ever goes to plan with my daughter's eyes, she developed edema in the eye.   That made it even harder for her to see even though she'd gotten her minimal vision back for a short while.  The treatment for edema was steroid drops—which we'd just gotten off of.  The only alternative was a non-insurance covered drop at $500 per bottle.  The edema passed and we thought we'd wait to see if things got better.   Because surely they would get better now.   It had to be time for something to get better. 

I remember one Easter when my daughter couldn't find any eggs at all, even the big ones when we were telling her exactly where they were right in front of her.  Things had been getting worse again and we didn't know why.  On our next visit to Detroit we found out her natural lens had developed more of a cataract and that was causing the new vision problems.  We knew there had been a little clouding before, but it had gotten worse quickly.   The only choice now was to remove her lens.   

If you remember from earlier in this story, my daughter wasn't a candidate for lens replacement like typical cataract patients.  That meant she would be aphakic or "without a lens."  If you ever took the lens off a camera and looked straight through it, her vision would be like that.  Completely and totally fuzzy.  She would have no way to focus because the entire focusing mechanism of her lens would be removed.  

What we needed to do was get glasses for her that would accommodate her prescription with no lens.  Those glasses would be responsible for doing all the focusing for her.   And if you're thinking, 'but glasses don't adjust focus like the eye can" then you'd be correct.  She would be stuck with whatever we gave her lens-wise.  Probably a medium focal length.   We could get her bifocals, but with her vision, that didn't make much sense. 

You wouldn't think it would be hard to get glasses for a little girl who's going blind.   A child who needs glasses to both protect her remaining vision, but also to let her see what little of the world was left that she could see.  It was though.   First, and you may know this already, but you can't get prescription glasses without a prescription from a doctor.   Our doctors (we still were seeing multiple) couldn't give her a prescription because they didn't know what her prescription was.   

Getting a prescription in-office is easy if you can see the letter chart, which my daughter could not.  There is another way to get a prescription though, and that's by doing a refractive index test while she's under anesthesia.  That test is fairly simple with the right equipment because it shines a light into the eye and then focuses it until the beam comes back at the right focal depth.   Not having a natural lens was okay, they could still do that test, only my daughter was only going for surgery and EUA's with Dr. Trese, and he wasn't an opthalmologist, he was a retinal specialist.   And there was another problem.  Even if he'd had that equipment, my daughter's retina wasn't flat.  It still had two buckles in it so the machine probably wouldn't work. 

I got on the phone one day with my daughter's main doctor at Duke and asked if she could just guess a prescription.   I said anything would be better than nothing.   If she could guess the minimum, medium, and maximum prescriptions my daughter might need and send me those prescriptions, I'd fill all three, getting her three pairs of glasses.   We could see which she liked the best.  You hear things like, "the wrong prescription can hurt your eyes."  And that's true, but we had nothing and my daughter had no lens inside her eye.   I got a little desperate for a while until that call. 

I filled +12, +17, and +22 prescriptions for my daughter, and yes, those numbers are correct.   Without a natural lens you need serious correction.   My daughter preferred the +17 ones.  I was relieved as now I had her protected.  Later on, Dr. Trese was able to borrow a refractive machine just for us and he got her prescription as close as could be guessed at and it turned out to be +17.5, so the glasses my daughter picked made sense.  We even had bifocals added to them so she could have some close-up vision, should she even be able to see enough to do so at +21.5 down at the bottom of her lenses.   

All seemed to be going steady for a while.  We didn't have any more degradation in her vision and hopefully, this would be the last of the worst because what else could possibly go wrong with my daughter's eyes.  In the next chapter, you guessed it, more goes wrong.   But we're nearing the end of the story of my daughter's eyes up to know, and we do get to stable eventually.

It Started With a Cat: Part III

We drove the following week to Detroit with preparations to have my daughter's first surgery with Dr. Trese in which she'd have a heavy substance in her eye and would have to lie on her back as much as possible.  We prepared the car to let her recline as much as possible for the ride home.   There was a chance Dr. Trese would have to put a gas in her eye, which would preclude air travel since gas expands in lower pressure during flight.   We ultimately traveled by car to Detroit only a few times thankfully before we were cleared to fly. 

We were new to eye surgery and didn't know what would happen, but we knew she'd have surgery and then be seen in his office the following day to confirm all was well.  The surgery didn't take long and her recovery from anesthesia was quick.   She wasn't happy about the patch over her uncomfortable eye, but it was okay, she'd be admitted and they'd help us make sure we did everything correctly. 

Or at least that's what we thought.   She had had dramatic eye surgery and had a patch and metal shield over her eye, and was released to us an hour after waking up.   I suppose in retrospect it makes sense, but at the time we were terrified she'd injure up what Dr. Trese had just done.  We took her to a restaurant to eat lunch.  She was fine.   It was strangely normal considering he just might have saved her vision in our minds. 

We were sent home the next day to return in two weeks.  What we had to do now was have my daughter lie on her back as much as possible so she could have the heavier PFO press down on the retina to help it lie back down.   My daughter could still see up very close to a degree so we rigged up an iPad so she could play games with big buttons and watch shows while lying on her back.  At three inches away from her face at least she could still see something. 

Dr. Trese thought he had an idea of what had happened to cause such a disaster in her eyes.  Her eyes were more susceptible to infection because of the malformations and poor vasculature.   When she got the infection in her eyes it damaged the ciliary bodies, which stopped producing fluid.   The pressure in her eyes dropped to zero and the retinas folded inwards, fluid filling in behind them.  

Dr. Trese explained that the eye should feel like a firm grape, which you can test by gently pressing on your eye through your eyelid.   Go on, do it, you'll understand exactly.  My daughter's eyes were like those old grapes that were soft which you throw in the trash.   The eye needs pressure to maintain the internal structure and she had none. 

With this new information, there was no need to continue on the IV steroids as an autoimmune disorder had been eliminated as a culprit.  This reduced my daughter to her normal, thin self.  She was very glad to have no more long injections.  She spent lots of time on her back, learning how to sleep on her back as well, something she absolutely didn't do before.   She was four-and-a-half and she was doing her best and rarely complained for no reason. 

For the next two years, we were frequent visitors to Dr. Trese's office.  Flight, rental car, check into the hotel, don't eat after eight, drink only clear liquids until two hours before arrival time, bring the Paw Patrol toys, get to the OR early, and then after surgery or EUA go get lunch or dinner.  We got so good at this that my daughter knew more about the airports, hotel staff and other things than my husband or I did because she always went and he and I only went every other time. 

Her right eye had some success with the retina laying back down, but it wasn't enough to merit doing the surgery on the left, and by that time with the pressure returned with additional injections of Avastin, her left retina laid mostly back down with one main fold remaining. 

There was something additional that happened in the first surgery that was alarming to us at the time but was just another thing to accept in the long list of things that would never be normal in my daughter's eyes She lost of her natural lens.   Dr. Trese said her lens was so large and nearly spherical that he wasn't sure he could get around it to do the initial surgery.   We needed to understand we might lose her lens.   When he came out after the first surgery while my daughter was recovering, he told us it had popped out and he'd had to remove it.   

Could she have an artificial lens added, just like all the cataracts patients have on a daily basis around the world?   That didn't bother me too much.  He said she was going to need glasses to protect her eyes regardless and he wouldn't want to put an artificial lens in because her eyes were not only too delicate to withstand it, but artificial lenses weren't made small enough for her undersized eyes.

Our life for over two years involved regular trips to Detroit with Dr. Trese taking the lead in my daughter's eye care.  His plan was one all our other doctors deferred to given his expertise.   There were many surgeries, countless EUA's, and office visits.   Dr. Trese was always surrounded by multiple fellows, all learning to become experts in their specialty. 

One time as Dr. Trese came out to talk to us after surgery he mentioned, in what somehow was a complimentary way, that he got all the crazy cases and my daughter was no exception.  He chuckled and said his newest fellow had just seen between my daughter and the case before, enough to need multiple years of fellowship just to understand.   

Dr. Trese was frequently traveling all over the world to give presentations at eye specialty conferences, but he always made time for us.  And we always said yes when he told us when we needed to be there.   If our daughter's vision could be saved, he was the one who could do it.  

In the next chapter, my daughter's eyes develop more complications and do a complete reversal on things we'd been fighting in one direction to become bad in a wholly new way.

It Started With a Cat: Part II

As the months dragged on and nothing changed with my daughter's detached retinas we began to grow more worried about returning her vision.   At this point, and for years really, we assumed there were things that could be done to help "fix" her eyes.   The problem was, no one knew what was going on that either caused the situation initially or was continuing to keep her retinas in a detached state. 

We had faith in our doctors, for we had many.   We were fortunate to live right by Duke Hospital and the Duke Eye Center was a preeminent location in the country for specialists.   We started asking around, discussing who or where we should go for a second opinion.  The news of my daughter's eyes spread like wildfire through friends and family and we were getting unsolicited suggestions of other doctors across the country who were reputed to be "the best" and had we considered seeing them?

I started a document of alternate doctors because I was getting so much information.   One name that came up, again and again, was Michael Trese (pronounced Tracy) in Detroit.  We asked our doctors at Duke about the possibility of a referral to him.  We heard what might be expected though, and that was it was very hard to get an appointment because he was in very high demand.   We didn't have time to wait though, my daughter's vision was not staying stable, it was deteriorating and there were other worrying signs.   We were told they would try to get us a referral, though. 

And that's when chanced on a bit of luck.  One of Dr. Trese's current fellows had come from Duke.   Our doctors, through that connection, got news of the bizarre case that was my daughter's eyes and within a week we were on our way to Detroit to be seen in the OR by Dr. Trese himself. 

Dr. Trese looked at my daughter's eyes in one of those EUA's we had had so many of in which she's put to sleep so they can look in-depth and all around her eyes.  He came out of the OR and the tall, quiet, grandfatherly gentleman spent about ten minutes explaining what he'd seen.   And he'd seen a lot. 

Her retinas were by now buckled.   We knew about this already, from Duke, but he explained more, saying that the retina had folded in it from being pressed towards the center of the eye due to the fluid behind the retinas.  This had likely changed their shape so that even if they could get the fluid to resolve, it might not be possible for her retinas to ever lie back down well.   It also appeared there was a lot of damage to the ciliary bodies in her eyes.   He wasn't sure if that was a result of other things or if that was the inciting problem. 

Ciliary bodies produce internal fluid for the eyes.  They produce fluid which then is drained through a ductwork mesh.   This process is ongoing and is called the aqueous flow which circulates fluid and maintains eye pressure.   Something had damaged those ciliary bodies, interrupting the natural flow.  Somehow the fluid that should have stayed within her eyes had gotten behind her retinas.   This explained why the situation wasn't resolving.   The fluid was either being replenished by the ciliary bodies and couldn't adequately drain or the drainage ductwork was damaged along with the ciliary bodies and nothing was flowing at all within her eyes. 

The latter seemed more likely because both eyes were at a pressure of zero.  High ocular pressure can cause damage and is known as glaucoma.   Low pressure is another animal.  High pressure can be resolved with drops that reduce the amount of fluid the eyes produce to keep up with the eye's ability to drain.  Low pressure, well, there's no way to just force fluid to be made when the bodies that produce it are damaged. 

What he suggested was coming back to do radical surgery.   He was going to do a vitrectomy in her right eye.  He selected that eye from his initial examination of her before going into the OR, where he had done a few tests and found out another thing we hadn't realized: the right eye could see almost nothing at all, having only minimal light perception.   He said the vision she had remaining in her left eye was precious to her and he didn't want to do the surgery there in case it wasn't successful.   I remember those words more than anything he's ever said, that her remaining vision was precious to her.   I asked if he thought he could return her vision and then he said the second thing I remember the most, "I'm just hoping we don't lose any more vision."

He was going to remove the vitreous in her right eye and replace it with two fluids.   The center part of the eye is filled with a clear substance that's a lot like jello in both consistency and behavior.   If you've ever stirred up a bowl of Jello, you know that it gets fractured and becomes a mess.   Mucking about in the center of the eye will disrupt the vitreous in this same way.   The only problem is, the vitreous you're born with isn't replaced or regenerated.   So any surgery to the interior of the eye requires removing some or all of the vitreous so the surgeon can do the work they need to do.   When the surgery is complete, typically where the vitreous was removed is filled with a type of oil that will remain in the eye that won't drain out.

Dr. Trese would replace her vitreous with Silicon Oil and add a small bit of perfluorocarbon (PFO) to her eye.   That substance was far heavier than the other things in her eye.   She would need to spend lots of time on her back so that the PFO would exert pressure on her retina in the hope of laying it back down.  He also was going to return both eyes to full pressure by adding a third substance to her right eye and the same single substance to her left, called Healon.   This third clear fluid would boost the pressure in her eyes and would flow out with the normal aqueous flow.   How long it took to do this was an unknown.   In normal eyes, Healon injections lasted about a month.  In her, it might last for months, he didn't know. 

He asked if we could come back the next week for him to perform the surgery and we said absolutely.   We left his office with not much change in my daughter's eyes, but some hope that there was a path, albeit what sounded like a long path, to begin to return her eye's anatomy to normal and possibly in the process return some of her vision.

At this point we had some email chains going with our doctors at Duke.   Typically all communication happened through the portal and we wouldn't have had such direct access, but I'd been overwhelmed by the kindness and level of care we were receiving.   My daughter's main pediatric opthalmologist even called me one night and talked to me for an hour, answering all my questions after my daughter's vision had seemingly deteriorated suddenly during one point prior to seeing Dr. Trese for the first time.   The doctors at Duke agreed it was a very good choice to have gone to Dr. Trese because he had seen some things in a new light and had the expertise to do the surgery he had suggested.   A surgery, I might add, that was not only uncommon, it was a Dr. Trese special.   Nothing about my daughter's eyes would ever turn out to be common.

In the next part of this epic eye adventure, we become well-versed in travel to Detroit, visiting Dr. Trese more times than I can count in the hopes of returning some vision or, as Dr. Trese had said, hopefully not losing more. 

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.