Can I Run Now

Imagine not knowing what’s out in front of you.   Imagine what it would be like not knowing if you were going to run into something and hurt yourself.   You don’t know if that something is hard, sharp or rough.   You have no idea if it’s at head height, will slam into your shins or will come from the side.   And then imagine your day was like that every day, all day long. 

That’s the world my daughter lives in with the small difference in that she has a very tiny bit of vision that tells her when things are looming in front of her—but not always in time to prevent running into them.   For instance, a large, dark trash can on the road she’d see, but the pole for a street sign she wouldn’t, and unfortunately it’s the latter that’s the more painful one to collide with. 

My daughter is happy and energetic and friendly and most of all energetic.    But she can’t run.   Or to be more specific, she won’t run.   She has been hurt so many times she is very cautious when it comes to moving fast—because the faster you’re moving, the more it hurts when you hit something.  

She will run, but in small bursts like running down the side yard to get to the play set or down the hall to the steps.   But she’s never really able to do that, “carefree” running children do so much of the time in their childhoods. 

Lately she’s been asking if she could run.  This morning while on vacation we were walking four blocks to get donuts and my daughter wanted to run.   We were on the sidewalk and it wasn’t perfectly even and there were driveways and inconsistent hedges, rocks and grass all along on both sides.   But she knew it was a sidewalk and she wanted so very badly to run.    

I told her it was safe for her to run.   And she started this hesitant, cautious shuffle run with her hand out in front of her face to protect her.   Initially she would wander off to the left or right but fairly quickly got better at staying on the sidewalk.  

She and I came up with a plan (since she was ahead of me and not being guided by my arm).   She would listen for the sounds of cars which would indicate she was close to the next cross street.   I would tell her, “okay, stop” when she was close and then we’d cross the street together. 

She did this all the way to and from the bakery.   Then when we went to the beach later in the day she wanted to run again.    She was more confident and didn’t hold her hand in front of her, knowing I’d yell stop if she was getting close to something.   That arm down by her side also gave her a more even stride, even though she was still holding back some on speed and confidence. 

When we came home from the beach she was running from the start to the end of the block and stopping herself shortly before the intersection (just before I was about to tell her to stop).   She was so happy running.  I need to get her in a mowed grass field somewhere and see how much speed she can put on without the fear of injury. 

The Big Boy Update:  My son wasn’t listening today.   He was also aggravating his sister intentionally.    His sister was complaining about everything.   Oh, and she wasn’t listening either.   So I snapped.   I yelled and I grabbed their arms and drug them down the steps so we could finally get going to the beach.   My son wasn’t happy at me at this point either so he wanted to walk with dad.   A few minutes later my husband came back to me and said my son just told him, “mommy may be pretty, but her attitude is far from pretty—way far from pretty.”

The Tiny Girl Chronicles:  My daughter and I were on the deck at my brother- and sister-in-law’s house today.   She had just come out and asked me, “is Taylor out here?”   Taylor is the dog.   I thought I heard her behind the table and looked through the chairs and saw her tail.   And then she was gone.   Gone, from the second story deck—suddenly.   And then I saw it: they had installed a dog door flap at the other end of the sliding doors.   So I showed my daughter.   Would you like to guess who spent the next fifteen minutes climbing in and out of the dog door?

Deceleration

We’re in the car today, our “Flying Car” because it has Falcon Wing doors and it can fly down the road. We’re heading north to visit family and our trip consists of three Tesla Supercharger stops, one ferry ride, one child that has intermittent car sickness and one blind child who only wants to run.

My husband has planned the trip around rush hour traffic, super charger locations, ideal time to stop for lunch and the ferry schedule.   And so far things are going well.   Oh wait, I spoke too soon, my daughter is just now saying she has to go potty and she can’t hold it and it’s too late and we’re on a road with no stops for several miles.

Driving in the electric car is comfortable and quiet.   There aren’t engine vibrations and you can ask the car to play any song you want.  

I’ve been driving an electric car almost exclusively for over a year so I forget how things work in a conventional internal combustion engine car.  Earlier this week I was in Detroit and had a rental car.   I kept getting confused because when I took my foot off the accelerator I expected the car to slow down.   But it did this thing called “coasting” I’d forgotten all about.   I wasn’t getting the deceleration I had expected—deceleration that told me the battery was being charged through regenerative braking.

But back to the trip…  On the whole it’s more complicated to plan a long trip in an electric car, but it isn’t necessarily longer.   We have three stops, two short, just enough time for a bathroom break, and one longer about the some time as grabbing a fast lunch.  

So I’ll take the electric cars any over a gas-powered vehicle.  The squabbling children in the backseat I might be willing to trade for by the end of the day if anyone is interested.

The Big Boy Update:  On the road today we had to stop several times at stop lights on secondary roads. My son wanted to get there so he could get out of the car and move around.   Grumpily he said, “it’s a red light.   No on likes red lights.”

The Tiny Girl Chronicles:  My daughter went to the bathroom with me at lunch today.   She found some brailler on the Koala Kare baby changing table and then opened it up to see if there was more braille inside.   I told her there were some instructions and they were each written in multiple languages.   I told her I saw Spanish, English, German and then she interrupted me say she was good at telling languages.   She felt all over and told me there was definitely English and Spanish and Japanese and she was pretty sure there was “New York Spanish” as well.

Toilet

My phone fell out of my pocket this afternoon, straight into the toilet.   I dove my hand down there without even thinking (I was just sitting down) and the phone at first seemed to be okay.   Then the screen started changing colors and I knew I hadn’t gotten it in time, which would have been hard since it was completely submerged.

Fortunately I could limp along and back up the phone, unpair the watch and then do a second backup in preparation for getting a new, less-wet phone.   Timing isn’t ever great but we’re leaving to visit family tomorrow morning and I was in the middle of packing.  

A few hours later and I have a new, functioning phone that’s going to be loading from cloud backup for some hours and a long list of things to get packed.    The children are excited to be going tomorrow to visit their cousins.   They’ve been talking about going for weeks.

Tomorrow we have a long car ride with multiple super charging stops and a ferry ride everyone is looking forward to.   It’s our favorite vacation of the year and it all begins tomorrow.

The Big Boy Update:  Nana was with my son the other day and she asked him if Papa should cancel his golf to play with them instead for the day.   My son said, “I want Papa to play golf because I want him to be happy.”

The Tiny Girl Chronicles:  My daughter and son love their sitter, Morgan.   My daughter was talking about all the people she loved the other day and told me in particular, “I’m not going to forget about Morgan until I die.”

The Things We Don’t Notice

My daughter notices things the rest of us don’t.   Without the sense of sight she takes in the world in a different way, observing things we don’t even realize.   I’m going to get used to this happening at some point but for now it still impresses me when she points out something that’s so obvious to her that I would have never even noticed.

For example, on our way to Detroit we had time, and like a good mother, focused on eating healthful foods, I told her we could stop in at the candy store in the local airport terminal to get a few pieces of candy before we boarded the plane.    She selected some strange gummy options and I talked myself into adding Lemon Heads to the bag before we checked out.

She rations her candy and saves some for her brother and father and keeps it in her backpack.    Yesterday after surgery (or the lack thereof) we went to the mall to have lunch, throw pennies from her panda purse into the fountain and get some candy before heading to the airport.    

We were in the penny throwing phase of our mall visit and talking about what we were doing next.   She informed me it was ice cream followed by candy.    I mentioned she still had candy from the day before so she could only get three pieces today.  I also mentioned that the store in the mall had a different selection so she could get some other things.    Then she said, “yes, and the other candy store has carpet and the one here doesn’t”.

Of course she was right, but with all the colors and fun looking candy bins, what sighted person would notice the floor material in a candy store?   And yet my daughter does notice.    I wonder what other things she knows about that everyone else overlooks because we’re doing exactly that—looking.

Another thing that was interesting was the tall seat discussion/disagreement she and I had while getting lunch at the mall.   I’d placed the order and while waiting for our food I suggested we find a seat.   My daughter said she wanted the tall seats.   I told her, after looking around the food court, that there were no tall seats.  

She said yes, there were and headed to the perimeter of the circular food court area.   I looked out and saw nothing but a wooden wall where she was standing.   I told her again that there were no tall seats.   She said,  “no, mom, over here”.   And I still didn’t believe her.   So I went to fetch her after putting our drinks on a non-tall table.   Where did I find her?  At the one section of bar-height chairs on the perimeter of the food court, just beyond where I could see.

She remembered.   She’d mapped the location in relation to Chick-Fil-A and she knew they were there. She didn’t rely on vision to let her know there were tall seats, she knew because she’d sat there before.   And the sad thing is—I’d sat there with her but because I didn’t see it, I didn’t remember it.  

I’ve got to stop doubting her when she says she knows what she’s talking about.

The Big Boy Update:  My children are having some fear issues lately when going to bed.   My daughter started it and my son has caught it.   I’m not sure the reason but we’re working through it.   Tonight after the children were in bed my husband and I were talking and putting up the dishes from dinner when my son came out of their room and told us he’d had a nightmare.   We’re not sure he had actually fallen asleep but he did seem scared.   I offered to walk him back to his room and put him to bed but that wasn’t good enough he said, “because when you’re around me I’m not scared”.   So he’s in the basement with me now, lying on the couch with a blanket while I write this blog post.   Hopefully he’ll be asleep by the time I finish.

The Tiny Girl Chronicles:   Speaking of fear, when my daughter and I arrived home from our long travels yesterday, my husband was still at a board meeting and my son was away with my in-laws.   I’m not sure what my daughter was worried about but she kept hearing things—thumps, bumps, walking noises, etc.—in the house as I unpacked and put up our things.   She wanted to be right beside me no matter where I went.   After the third or fourth thing I didn’t hear and wondered if she was making up she told me with an air of confidence, “this house has to be haunted”.

The Smelly Nose Thing

My daughter had no eye surgery today.   That’s not to say we didn’t travel to Detroit and go through everything we would for surgery, it’s just we don’t know until she’s in the OR.  Nor, for that matter, does her doctor.    Some people have eyes that are relatively stable.  Your vision declines as you age, you have a cataract that slowly progresses or you have some specific event like a retinal tear that’s diagnosable.  

My daughter’s eyes are somewhat like going through a haunted house—you know something scary is probably just around the next corner, you just don’t know what it’s going to be.   And then sometimes, just to throw you off, nothing happens, there’s even nice surprise, like the calm before the next unexpected event.    Perhaps that’s not the best metaphor but for almost the last two years it’s what it feels like sometimes.

Today Dr. Trese came in and we discussed how things were going (some vision was back albeit minimal).   My daughter demonstrated how she could, “fix my eye by squeezing it” as she described it, which afforded her some additional visual information.    My daughter was ready to go back to the OR at this point because, “I’m hungry, I want to do the smelly nose thing now”.  By this she meant the anesthesia mask.  Earlier she had been offered multiple scents (rubbing scented chapstick inside the mask) but declined saying she didn’t need it.

In longer than I expected, Dr. Trese came out, which was worrisome but gave me more time to get some Starbucks from downstairs.   My husband and I didn’t expect Dr. Trese to do anything today because her vision was improving some as opposed to declining and with her eyes, less surgeries is on the whole better.    The first thing Dr. Trese said when he walked out was, “her left eye is looking pretty good."

The pressures in both eyes were normal with the left at seventeen, holding from a month ago.   Since we’re uncertain if her eyes produce any internal fluid at all, this is good news in that either the aqueous flow is draining very slowly or the ciliary bodies are producing some measure of fluid, helping to keep her eyes from collapsing.

Her retina in the left eye is also attached.   Yes, I said attached.   And I’m going to be honest here, my husband and I have taken extensive notes every time we’ve talked to my daughter’s doctors and I know they are doing their best to keep us informed—but we’re not eye surgeons or specialists and we don’t always know the right questions to ask.   But this was new.   The amount of detachment we’ve had reported has fluctuated over time, the location and how many folds has been confusing aside from the very scary pictures I posted here way back at the start that made my daughter’s retinas look like crumpled bedsheets inside her eyes.  

At any rate, he says it’s all down and attached, which is quite helpful as she’s never had anything done to the retina on that eye.   She’s had surgeries including having the pressure increased and the lens removed and there are other areas damaged in the eye, but the retina itself hasn’t had the special treatment like the right eye with the Silicon Oil and PFO  added to try and lay the retina down.

Okay, so retina not detached, check.   But there is some pigmentation underneath the retina with a clumping and distribution in the main focal area.   This is likely affecting her vision as a result.   And unlike the hematoma it may not resolve.   That’s not to say it won’t, it’s just not the expected or default course of events.

Dr. Trese suggested we have an EUA in a month to get a refraction.   You heard that right?  I’m finally getting the refraction under anesthesia I’ve wanted for what seems like twelve years now.   Please let’s not have anything go wrong in the next month because getting the correct lenses on her (well, her left eye) might make a significant difference in what she can see.

Dr. Trese left me with that interesting little quaint smile he has, adding a comment almost like he couldn’t help himself.   He said, “she has the nicest spirit.   She came hopping and dancing into the ER and made everyone smile.”

As soon as he’d left, I texted our pediatric ophthalmologist with an update from Dr. Trese.   I asked if we could get on her OR schedule for a refraction and pressure check in a month.   Dr. Grace has been wanting to do some other diagnostic tests as well and they have my daughter in a study which means at no cost and yet lots more data from this new and exciting imaging machine which is FDA approved but since the mounting bar isn’t, they have to do another trial.    How interesting is that?

This post is late tonight and I haven’t responded to text messages today mostly because with no surgery today we decided to come home a day early since we didn’t have a follow-up appointment the tomorrow morning.   Travel was complicated, I almost inadvertantly killed my laptop (it’s okay, I’m nursing it back to help with pliers, don’t ask).   And when I’m done with this post I’m passing out because I was up at 5am and I’m tired.

But yeah, good day overall.   Have we gotten back what we lost from the hematoma?  No.   We’re down vision points (if we’re keeping score).   But we did earn some bonus points for fully attached retina and given my daughter’s eyes, I’ll take what I can get.

The Big Boy Update:  My son is with my in-laws today.   This afternoon Papa suggested they drive their golf cart over to play a few holes.   My son said, “no, no, no, I’m not going to play golf.”   Papa told him, “your father started about the same age as you are and he loves golf.”   My son replied, “just because one person has a talent for something doesn’t mean someone else should have a talent for it.”

The Tiny Girl Chronicles:  Our rental car had radio.  You know, that AM/FM stuff children don’t know about.   We were on our fifteen minute ride to the hospital and my daughter had been stuck listening to FM morning talk show and commercials as I switched from station to station trying to find something.    She said in a disgusted voice from the back seat, “I want a song; this is getting ridiculous.”   I had forgotten how much non-music there is on FM radio.   I had to agree with her.

I Smell Baked Beans

Tomorrow is double eye surgery day.  My daughter and I are in Detroit tonight with an early arrival time in the morning.   Uncle Bob is also having follow-on eye surgery from his recent retinal detachment.   He has a vitriol detachment now after the retina was reattached, a complication that happens to approximately one in ten patients.   So we’re thinking about Uncle Bob tomorrow as well when it comes to eyes.

My daughter and I got to the airport today around dinner time and as we found our gate we prepared for a bit of a wait due to a delay in departure time.   I told my daughter we had time to find some food so let’s walk down the concourse and see what we could find to eat.    We hadn’t gone one gate down when she suddenly said, “I smell baked beans!”  (My daughter loves baked beans.)   I looked around and the only thing I saw was California Pizza Kitchen, only wait, there was some barbecue place with a small sign just to the side.  

So we walked over to find…baked beans.   And mac & cheese and green beans, all things high up on my daughter’s list of favorite foods.  She and I shared a plate together with me eating most of the other items, being told the baked beans were hers and hers alone.

Tomorrow my daughter may or may not have surgery on her left eye.   The vision has improved from zero to something and knowing Dr. Trese, he will likely elect to do nothing the eye is still healing itself.

The Big Boy Update:  My son and husband went to the pool this morning for a play date with two boys and their father from our neighborhood.   It was cloudy at first but the sun came out a little bit later.   After some time in the pool my son said, “dad, turn around”.   He then touched my husband’s shoulders and asked if it hurt.   Dad said, “maybe a little”.   My son told him in a confident tone, “I think you’re sunburnt”.   It turns out, he was.

The Tiny Girl Chronicles:  I was listening to one of the recordings our play therapist air drops to us after the last session with my daughter.   They were having a nice time “playing” together, hiding and then finding some shells in kinetic sand.   Dhruti said the time was almost up and she might not be able to finish finding the shells my daughter had buried for her.   My daughter said in a happy voice, “I can help you, that’s all about friends!”

Of Course I Can Lend a Hand

My daughter is a hard one to keep entertained.   When her vision was better she liked being on her iPad because she could see something and her therapist said to let her see as much as she could and don’t be afraid to let her have the iPad because at some point she might lose more vision—and she did.

So now she likes to “listen” to shows.   She loses interest fairly quickly though and she gets bored.   There’s not a lot she can do that doesn’t require seeing something.   She can help with putting the laundry or dishes away because it’s a fixed task she can do with someone else.   She loves to do “special time” with a parent or friend and she especially likes to do projects or crafts or some game of her creation.

But in large part she’s going unstimulated for a good portion of her waking hours.   She’s doing well in school because she has a sensory impairment, not a learning disability, but it’s still long and slow and hard and she has to work in entirely different and more challenging ways to learn something a sighted child would be able to pick up quickly.

So she’s bored.   She’s really good at not getting upset about it but sometimes it comes out.   The other day I asked her if she could help me with something.   She replied in almost an offhand manner, “of course I can lend a hand.  Because I’m just sitting around.   And most of the time I’m bored.   I’m always bored.”

We’re trying to keep her mentally stimulated but it’s hard to do without being one on one with her constantly and the other demands on our life make it hard to dedicate as much time to her as we’d like to.

The Big Boy Update:  My son did not want to go to a birthday party today because he said the birthday girl was, “too bossy”.   I told him it would be nice if he didn’t say that to her or her parents when he got there and perhaps the other friends at the party would be fun to spend time with.    When I went to pick him up he was the last one there, playing with Lilah, who’s birthday it was, and they were for all appearances, best friends.   Also, my son’s shoes were soaked and he’d been in the creek with sand and dirt all over him.   I made him strip down to his underwear before letting him get in the car.   But he had fun.

The Tiny Girl Chronicles:  My daughter and I were playing the musical instruments yesterday.   She and I played the triangles and listened to the sounds.   She said to me, “that sounds like Julia’s wind chime in Maryland.”   I didn’t even know there were wind chimes at their house.   My daughter never misses a sound though.

Woah, I Ran Again:  Eight miles today.   I told my best friend I was going to have to start training for distance again because I took such a hiatus from exercise in general that I’m not in the shape I was.   Eight miles should have been nothing.  So should twelve or even sixteen miles but I can tell I ran and tomorrow I might even be sore.   But it was nice taking a break, I can’t complain.